So, quinn did have an xray last week and it didnt show any changes. she still had air fluid levels in her, her liver was enlarged it was pushing her intestines out of place and her colon is so dilated it just looks hideous. ultimately it was my decision to send quinn home on tpn or not... or so that is how it appeared to me as the doctors who were on her team felt that either road was not going to be easy. i just wanted her home and so i told the new gi doc that i wanted her home on tpn but they felt that despite her bad xrays, things were moving in the right direction. she finally was producing bowel sounds and we were going to try a new bowel regimen and formula concoction. plus they upped all her meds and they just wanted tosee how things went before they said that she was a lost cause. I sincerely thought ti would be an epic failure. I was mad and upset. i knew halloween was coming up. quinn hasnt had a quality of life the past three months. she lost so much weight and her health had been rapidly declining. i thought that since her xray was STILL crappy, there was no way she would tolerate feesd without some major discomfort. i just wanted to take my baby home instead of trying feeds, torturing her, deeming it a failure and then having to spend halloween in the hospital anyway because we wouldnt be able to get tpn over the weekend. i wanted quinn to have a break and i would have been more than happy to try feeds at a later date, when her xray looked better. well, doc still wanted to try her on feeds and i was not happy about it. my only real experience with doctors slowly titrating feeds up was with loma linda, and all they do is get her up to her goal and send her home all the while making me feel like i was just taking up space in the hospital, which was exactly how i expected to be treated here. loma linda always sent her home without making sure that they knew that she was definitely tolerating her feeds. well, apparently chla is different, than heavens.
not only do they communicate well, they also continuously communicate with the nurses also! so they are constantly updated on how quinn is doing. after an entire week of being completely hesitant, pessimistic, apprehensive, nervous, anxious and frustrated, quinn very slowly tolerated her feeds! i was surprised, pleasantly of course! quinn is on a new formula with some additives. it is specialized for her and it has been working. quinn reached her goal of 38ml/hr this weekend. unfortunately, even 40ml/hr is not optimal hydration for her. they want her at a rate of 50ml/hr, and so far our attempts to increase her rate has failed. but we arent going to stop trying. i am so glad that the last gi doctor pushed for me to do gi feeds. yes, we have been here a long time and i just want to go home, but as our lovely gi doctor put it... 1 slow step forward is better than a fast step backwards. we still dont know surely if things will continue to go so well, but iwas told today taht she is definitely closer to going home. quinn also looks so much healthier,she has a lot more energy and is awake for most of the day, so the formula isnt even making her feel miserable.
i really, really thought this was the end of the road, at least for now. i thought we had no other choice and that quinn needed to go home on tpn. even the hospitalists felt that feeding a gut like that wasnt a good idea, but quinn has surprised us all. her xray was bad... definitely really bad.... but she did it! shes amazing!!! i am so glad she doesnt need tpn or ppn right now. i am so happy that this team is taking her issues seriously and are really making sure she is definitely tolerating it. it does suck that we have to be in for so long, but this is definitely necessary as quinn was deteriorating rapidly. here, if she needs something, she gets it right away.
quinn was cinderella today. she felt really special. she walked around adn visited kimberlin (a friend of ours who is also in the hospital and also has mitochondrial disease). she got a bag of goodies and the nurses are wonderful. quinn gets plenty of toys and attention here.
things are going well and whenw e are finally discharged, i will be at peace, knowing that we did everything at quinns pace, even if it is going home on fluids or ppn or a new tube, whatever the outcome may be, i am grateful that they are taking quinns issues so seriously here and are moving at a good pace for quinn.
Monday, October 31, 2011
Sunday, October 23, 2011
maybe something good will come of this
It seems that everytime I update here (since I do it so rarely when inpatient) something good happens afterward, so we are going to try this out and see if it makes something happen.
So, last Saturday ( the 15th) Quinn's belly just wasn't acting right. That morning, she was pretty distended so I decided to stop the feeds and put her on just pedialyte with sugar to see if that might help her distension. Throughout the day, it was obvious that it was doing nothing. She was getting more and more distended... Even with just the pedialyte. I wouldn't even let her drink anything (even though it just gets drained out). She was still acting ok, but the belly was doing her no justice. I put her to bed, like usual, but she started to complain of an aweful lot of belly pain. I did my best with what I had available to me and tried like hell to keep her home, but by midnight, Quinn's abdomen was rock hard and she was in complete agony. I rushed her to our local er where we found out that Quinn's entire gi system was completely full of air and that her large and small bowel were very dilated, she also had a large amount of stool and her air fluid levels were absolutely not good. Translation: Quinn had yet another bowel obstruction (just short of 2 weeks after her last one. Quinn needed morphine to control the agony she was in and we were told that it was too dangerous to continue feeding her. I was able to take a peek at her film and from my standpoint, it waS definitely not good. All I saw was a black abdomen. You couldn't even see her intestines. Everything was black. She was transferred to children's hospital los Angeles (yeah, not loma linda). Her doc said she needed tpn... No questions asked.
Chla is definitely better for her. They are treating her as a whole and not ignoring any of her symptoms. The communication between docs and specialties is amazingly wonderful! Way more than I could ever say about loma Linda. The first couple of days were torture. Quinn was obviously pretty sick. She looked sick. She was pale, her face was swollen. She didn't even get out of bed for almost 4 days. On Sunday, she started blowing ivs. And by Monday, she had been poked more times that I can remember (at least 15 or more). She lost all access and within an hour, her blood sugars started to crash. We had no choice but to try and keep her sugars up in the 70s until we could find a vein by running pedialyte with sugar. We had a last ditch effort and she was able to hold one (BARELY) for 12 hours. Finally, she went in for her picc line on Tuesday morning. Quinn's arms are very bruised from all the torture, including one very large one about the size of a silver dollar.
Quinn had a huge tube shoved down her nose on Tuesday to try and help with releasing the air. It is on intermittent suction and she was also started on golytely on Monday to try and help the stool to come out. She has had 5 xrays in one week and she has shown little progress. Quinn's last Xray was yesterday and it still showed a significant amount of air in her small and large intestine as well as loops of dilated bowel in her small and large intestine. We all expected improvement, but so far, we have seen none. Yesterday, Quinn was hooked up to a rectal, gtube, and jtube drain, as well as keeping the tube in her nose on suction. Quinn still continues to have no bowel sounds. She has yet to poop since they stopped the golytely a couple of days ago. Even when she was on the golytely Quinn's poop was acid yellow and burnt the crap out of her poor butt.
The original plan was to get her cleaned out and try her on a new formula, depending on how well she tolerated, we would go home on either PPN and the formula, or just the formula if she tolerated well. Tolerex is the new formula they wanted to try on her. They were going to add micro lipids and try her on magnesium citrate for the bowels. Day by day, that plan seems to be getting blown out the window. We have yet to successfully decompress her and she continues to become visibly distended. We are measuring her belly now and in one day, it is 2 inches bigger. Tomorrow, Quinn is expected to have an Xray again.
We also started her on another course of flagyl. The doctors seem to be leaning towards sending her home on full tpn now. Tomorrow, Quinn will have another Xray. I am honestly not anticipating any manor changes in this one again... Both good or bad. Quinn hasn't pooped or farted since we stopped the golytely Friday. She complains of pain when pushing meds. Her j tube is draining brown. And this air that is trapped in her seems to be in all the wrong places. Places that none of our drains are able to get to. Tomoriw I will try my best to be mama bear. I want answers. I want a plan. This whole week, we have been sitting around waiting for her bowels to wake up... Well, they haven't yet. I want them to tell me what we will do after this Xray. Either advance feeds if it is ok (a given), but if its not, I need a plan. Even if we have reached the end of the road and Quinn needs to go home in tpn temporarily. At this point, I would deal with whatever I had to, but I think Quinn is showi g us that something different needs to happen. The kid is just not tolerating feeds. She lost so much weight. Even being on tpn for this whole week, she has only managed to gain 0.4 lbs. She's 38lb, still a 4-5 lb weight loss since the end of August. So, k hope that tomorrow will bring us good news or at least a plan so we can work on going home.
So, last Saturday ( the 15th) Quinn's belly just wasn't acting right. That morning, she was pretty distended so I decided to stop the feeds and put her on just pedialyte with sugar to see if that might help her distension. Throughout the day, it was obvious that it was doing nothing. She was getting more and more distended... Even with just the pedialyte. I wouldn't even let her drink anything (even though it just gets drained out). She was still acting ok, but the belly was doing her no justice. I put her to bed, like usual, but she started to complain of an aweful lot of belly pain. I did my best with what I had available to me and tried like hell to keep her home, but by midnight, Quinn's abdomen was rock hard and she was in complete agony. I rushed her to our local er where we found out that Quinn's entire gi system was completely full of air and that her large and small bowel were very dilated, she also had a large amount of stool and her air fluid levels were absolutely not good. Translation: Quinn had yet another bowel obstruction (just short of 2 weeks after her last one. Quinn needed morphine to control the agony she was in and we were told that it was too dangerous to continue feeding her. I was able to take a peek at her film and from my standpoint, it waS definitely not good. All I saw was a black abdomen. You couldn't even see her intestines. Everything was black. She was transferred to children's hospital los Angeles (yeah, not loma linda). Her doc said she needed tpn... No questions asked.
Chla is definitely better for her. They are treating her as a whole and not ignoring any of her symptoms. The communication between docs and specialties is amazingly wonderful! Way more than I could ever say about loma Linda. The first couple of days were torture. Quinn was obviously pretty sick. She looked sick. She was pale, her face was swollen. She didn't even get out of bed for almost 4 days. On Sunday, she started blowing ivs. And by Monday, she had been poked more times that I can remember (at least 15 or more). She lost all access and within an hour, her blood sugars started to crash. We had no choice but to try and keep her sugars up in the 70s until we could find a vein by running pedialyte with sugar. We had a last ditch effort and she was able to hold one (BARELY) for 12 hours. Finally, she went in for her picc line on Tuesday morning. Quinn's arms are very bruised from all the torture, including one very large one about the size of a silver dollar.
Quinn had a huge tube shoved down her nose on Tuesday to try and help with releasing the air. It is on intermittent suction and she was also started on golytely on Monday to try and help the stool to come out. She has had 5 xrays in one week and she has shown little progress. Quinn's last Xray was yesterday and it still showed a significant amount of air in her small and large intestine as well as loops of dilated bowel in her small and large intestine. We all expected improvement, but so far, we have seen none. Yesterday, Quinn was hooked up to a rectal, gtube, and jtube drain, as well as keeping the tube in her nose on suction. Quinn still continues to have no bowel sounds. She has yet to poop since they stopped the golytely a couple of days ago. Even when she was on the golytely Quinn's poop was acid yellow and burnt the crap out of her poor butt.
The original plan was to get her cleaned out and try her on a new formula, depending on how well she tolerated, we would go home on either PPN and the formula, or just the formula if she tolerated well. Tolerex is the new formula they wanted to try on her. They were going to add micro lipids and try her on magnesium citrate for the bowels. Day by day, that plan seems to be getting blown out the window. We have yet to successfully decompress her and she continues to become visibly distended. We are measuring her belly now and in one day, it is 2 inches bigger. Tomorrow, Quinn is expected to have an Xray again.
We also started her on another course of flagyl. The doctors seem to be leaning towards sending her home on full tpn now. Tomorrow, Quinn will have another Xray. I am honestly not anticipating any manor changes in this one again... Both good or bad. Quinn hasn't pooped or farted since we stopped the golytely Friday. She complains of pain when pushing meds. Her j tube is draining brown. And this air that is trapped in her seems to be in all the wrong places. Places that none of our drains are able to get to. Tomoriw I will try my best to be mama bear. I want answers. I want a plan. This whole week, we have been sitting around waiting for her bowels to wake up... Well, they haven't yet. I want them to tell me what we will do after this Xray. Either advance feeds if it is ok (a given), but if its not, I need a plan. Even if we have reached the end of the road and Quinn needs to go home in tpn temporarily. At this point, I would deal with whatever I had to, but I think Quinn is showi g us that something different needs to happen. The kid is just not tolerating feeds. She lost so much weight. Even being on tpn for this whole week, she has only managed to gain 0.4 lbs. She's 38lb, still a 4-5 lb weight loss since the end of August. So, k hope that tomorrow will bring us good news or at least a plan so we can work on going home.
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Tuesday, October 11, 2011
Been Out
I just haven't been updating. Most of you who read this already know what's been going on.
I left the hospital on Monday... was it Monday? probably... I think anyway. Monday the 3rd...? Well, it was Sunday or Monday. Either way, we spent less than 24 hours out when Quinn started spilling ketones. I was very concerned because she hadn't been peeing. She was on the new, higher calorie formula and she wasn't doing, "well"... she was ok... just not where I wanted to see her. I was very concerned that she was dehydrated. she was having massive headaches still. so I drove her all the way out to CHLA again, due to the ketones. i thought for sure her labs were going to be wrong since Loma Linda refused to draw labs or check her urine. I was unsure of how long she had been spilling ketones. Her labs were all normal and she wasn't even dehydrated. This was good news. I was a little upset that I drove all the way out to LA, but I felt better about her health after learning that she was getting enough hydration at home. It wasn't completely wasted because I got to hang out with my friend and her mito kids.
Throughout the week, she still hasn't been 100%. a few days after we drove to CHLA, she was still spilling a small amount of ketones, she was just "off" and we were battling blood sugars that were 220-356. We figured out that she wasn't properly metabolizing her new formula. her mito doctor suggested taking her off the new formula and putting her back on the vivonex. The problem with this is that her caloric intake is precarious on this formula. We have an appointment on Thursday to see the nutritionist. I'm very concerned about her weight. She went from 42lb to 38 since the end of August. She was 38lb exactly yesterday, which means she is almost 37 lb. she has been losing weight so rapidly, I am truly worried about her.
The other day, I was at a restaurant with my sister and her family and my Dad. Quinn really wanted to eat, but she really can't tolerate it. I decided to allow her to have some soup. They only had broccoli and cheese soup, so we took all the broccoli chunks out of it and allowed her to have the soup, thinking it would drain. It did drain, but not very quickly. An hour later, Quinn was laying in my dad's arms, almost completely unconscious literally puking in her sleep. She was so pale. At first, i thought she was having a seizure or something, but this wasn't anything like any of her other seizure episodes, she was also a little aware of what was going on, but almost completely unconscious, none-the-less. She was sleeping... deeply sleeping and we were unable to wake her enough for more than just a mumble here and there. She was also puking... she was completely limp, like a noodle. She couldn't even hold her head up. Her blood sugar was normal and her breathing was normal. I frantically sucked all the soup I could out, but chunks of broccoli were clogging it up. We thought we should call an ambulance, but since things were all normal, shew as just sleeping and unable to arouse fully, we decided to just let her sleep and keep a watchful eye on her. IT WAS A VERY SCARY EPISODE!!! Thank goodness my family was there to help me.
The next day, yesterday, we had an appointment to see her geneticist. I think he was a little surprised with how progressed her GI tract has gotten since our last appointment with him in March. It was a good appointment. The man is very smart. The only disappointing thing is that she has Mito! You can't really do much with a progressive and incurable disease. He is increasing all of her mito medications by a lot. Quinn weighed 38 lb. we are not happy with her weight loss at all. i was not expecting him to bring up TPN at all. he said that if she continues to lose weight as rapidly as she is, we will have no choice but to do central access and give her PPN or TPN. She is just having a very hard time absorbing what is being fed into her.
I am very happy with the care her geneticist is providing her. He answers his e-mails and he is ok with me e-mailing him with any changes and he is ok with making suggestions to help her. I do not know what is going on with her GI doctor. He did not answer back to my last two e-mails. I left his nurses a message today about my concerns with her weight. I have a feeling, Loma Linda has given him a bad taste. it is just a feeling. I am very frustrated with her care there. I think the last GI doctor that cared for her was upset with me, but maybe I should stop enveloping myself in Dogma and email her GI doc back no matter what to update him. I probably will if I don't receive a return call today. He has a right to know that the new formula didn't work, that she is still losing weight and that I am VERY concerned with how things are looking right now. Loma Linda just didn't seem to care much when we were inpatient nor did they look at the bigger picture here. They told me that her metabolic state is secondary to her GI function, but in reality, her mito is the reason why her GI system is the way it is. Their information is also inaccurate (for instance, they put her discharged weight as 41lb.... in reality, she was weighed THAT MORNING and she weighed 38lb... I was there. i saw the scale. me and the nurse put her on it and etc. she didn't even weight 41lb at all the whole time we were in that stay. If the last GI doctor was telling him that my concerns were unjustified in any way, i would expect her GI doctor to trust his colleague over my word. This is what I think has been happening and if it has, it would sadden me. I just want my daughter to get proper treatment! It is sad when the doctors don't take things seriously until they SEE with their OWN EYES that we aren't exaggerating anything!!! this stuff really IS going on! I thought about buying a video camera, when i can get the money and literally video documenting our hospital stays, our appointments, all of her episodes that are scary as hell! EVERYTHING so I don't have to deal with egotistical doctors who think they know everything about everything. YOU AREN'T HERE when my baby is LITERALLY PUKING HER BRAINS OUT FOR HOURS UPON HOURS!!! I HAVE to rely on the fact that you WILL believe what I am telling you and TAKE IT SERIOUSLY. Ugh!~ Sorry I'm just a little frustrated. I understand that there are moms out there that exaggerate things and make a big deal out of nothing. I don't do that. I might get worried sometimes prematurely, but my worries are justified
I left the hospital on Monday... was it Monday? probably... I think anyway. Monday the 3rd...? Well, it was Sunday or Monday. Either way, we spent less than 24 hours out when Quinn started spilling ketones. I was very concerned because she hadn't been peeing. She was on the new, higher calorie formula and she wasn't doing, "well"... she was ok... just not where I wanted to see her. I was very concerned that she was dehydrated. she was having massive headaches still. so I drove her all the way out to CHLA again, due to the ketones. i thought for sure her labs were going to be wrong since Loma Linda refused to draw labs or check her urine. I was unsure of how long she had been spilling ketones. Her labs were all normal and she wasn't even dehydrated. This was good news. I was a little upset that I drove all the way out to LA, but I felt better about her health after learning that she was getting enough hydration at home. It wasn't completely wasted because I got to hang out with my friend and her mito kids.
Throughout the week, she still hasn't been 100%. a few days after we drove to CHLA, she was still spilling a small amount of ketones, she was just "off" and we were battling blood sugars that were 220-356. We figured out that she wasn't properly metabolizing her new formula. her mito doctor suggested taking her off the new formula and putting her back on the vivonex. The problem with this is that her caloric intake is precarious on this formula. We have an appointment on Thursday to see the nutritionist. I'm very concerned about her weight. She went from 42lb to 38 since the end of August. She was 38lb exactly yesterday, which means she is almost 37 lb. she has been losing weight so rapidly, I am truly worried about her.
The other day, I was at a restaurant with my sister and her family and my Dad. Quinn really wanted to eat, but she really can't tolerate it. I decided to allow her to have some soup. They only had broccoli and cheese soup, so we took all the broccoli chunks out of it and allowed her to have the soup, thinking it would drain. It did drain, but not very quickly. An hour later, Quinn was laying in my dad's arms, almost completely unconscious literally puking in her sleep. She was so pale. At first, i thought she was having a seizure or something, but this wasn't anything like any of her other seizure episodes, she was also a little aware of what was going on, but almost completely unconscious, none-the-less. She was sleeping... deeply sleeping and we were unable to wake her enough for more than just a mumble here and there. She was also puking... she was completely limp, like a noodle. She couldn't even hold her head up. Her blood sugar was normal and her breathing was normal. I frantically sucked all the soup I could out, but chunks of broccoli were clogging it up. We thought we should call an ambulance, but since things were all normal, shew as just sleeping and unable to arouse fully, we decided to just let her sleep and keep a watchful eye on her. IT WAS A VERY SCARY EPISODE!!! Thank goodness my family was there to help me.
The next day, yesterday, we had an appointment to see her geneticist. I think he was a little surprised with how progressed her GI tract has gotten since our last appointment with him in March. It was a good appointment. The man is very smart. The only disappointing thing is that she has Mito! You can't really do much with a progressive and incurable disease. He is increasing all of her mito medications by a lot. Quinn weighed 38 lb. we are not happy with her weight loss at all. i was not expecting him to bring up TPN at all. he said that if she continues to lose weight as rapidly as she is, we will have no choice but to do central access and give her PPN or TPN. She is just having a very hard time absorbing what is being fed into her.
I am very happy with the care her geneticist is providing her. He answers his e-mails and he is ok with me e-mailing him with any changes and he is ok with making suggestions to help her. I do not know what is going on with her GI doctor. He did not answer back to my last two e-mails. I left his nurses a message today about my concerns with her weight. I have a feeling, Loma Linda has given him a bad taste. it is just a feeling. I am very frustrated with her care there. I think the last GI doctor that cared for her was upset with me, but maybe I should stop enveloping myself in Dogma and email her GI doc back no matter what to update him. I probably will if I don't receive a return call today. He has a right to know that the new formula didn't work, that she is still losing weight and that I am VERY concerned with how things are looking right now. Loma Linda just didn't seem to care much when we were inpatient nor did they look at the bigger picture here. They told me that her metabolic state is secondary to her GI function, but in reality, her mito is the reason why her GI system is the way it is. Their information is also inaccurate (for instance, they put her discharged weight as 41lb.... in reality, she was weighed THAT MORNING and she weighed 38lb... I was there. i saw the scale. me and the nurse put her on it and etc. she didn't even weight 41lb at all the whole time we were in that stay. If the last GI doctor was telling him that my concerns were unjustified in any way, i would expect her GI doctor to trust his colleague over my word. This is what I think has been happening and if it has, it would sadden me. I just want my daughter to get proper treatment! It is sad when the doctors don't take things seriously until they SEE with their OWN EYES that we aren't exaggerating anything!!! this stuff really IS going on! I thought about buying a video camera, when i can get the money and literally video documenting our hospital stays, our appointments, all of her episodes that are scary as hell! EVERYTHING so I don't have to deal with egotistical doctors who think they know everything about everything. YOU AREN'T HERE when my baby is LITERALLY PUKING HER BRAINS OUT FOR HOURS UPON HOURS!!! I HAVE to rely on the fact that you WILL believe what I am telling you and TAKE IT SERIOUSLY. Ugh!~ Sorry I'm just a little frustrated. I understand that there are moms out there that exaggerate things and make a big deal out of nothing. I don't do that. I might get worried sometimes prematurely, but my worries are justified
Sunday, October 2, 2011
still in
Here we are. Still in the hospital. I might go into details, I might not. Let's start off by saying that I've been quite disappointed in her care thus far. But that's really not entirely surprising, right?
There was a reason I was so apprehensive to just go home after being informed that Quinn's cultures for meningitis were clear. I was happy that she didn't have meningitis afterall, but I had a gut wrenching feeling that Quinn was not stable enough to be home, and that feeling was dead on.
A few hours after I posted that last update, Quinn started vomiting, profusely. She vomited every 5-10 minutes for three hours straight and continued to vomit into the next day. Despite my efforts to inform them that I had been concerned about her motiliy, they did not take it seriously until the vomiting would not stop. They did an Xray which showed she was very backed up with stool. They triedan enema, which did nothing. Quinn has been to the point for a month now where enemas don't work, at all. She won't even stool the flush out. It stays stuck up inside her. They tried giving her mirilax. It only caused her to vomit more. All the while, the doctor who was caring for her was not communicating with me at all. I got very frustrated with this and was emailing her gi and her mito doctor. Who were recommending different treatments. This attending did not like that I was consulting othere doctors and I believe I offended him in doing so. He belittled my suggestions and literally chuckled at my ideas of what was probably going on with her. He finally started her in golytely to try and clean out her bowel. I was elated when her care was turned over to the next doctor on Saturday morning.
It still has not been easy. Quinn originally came in for infection. When her bowels stopped working, it became a new issue, however these doctors do not look at my child as a whole. Quinn has mito. This is a multi-organ involvement! You cambria treat my child like any child coming in for just constipation. There is more to her care than that. Instead of looking through her records, they proceeded to write orders that were detrimental to Quinn's health. Quinn finally got cleaned out on Sunday morning, so they wanted to start her feeds. The first mistake: they ordered her a diet for age! When I learned of this, I informed them that Quinn's well being is dependant on a very specific diet. Had they bothered to read her file, they would have known that Quinn is only allowed a clear liquid diet and it is solely for her own pleasure. The liquids always get drained right out of her stomach and into a ferral bag. This is important because Quinn accumulates so much air and if it is not immediately drained, air gets trapped into her small intestines and can cause even further problems with her motility. It is essential that her stomach is left on a drain. The problem was fixed, but not entirely.
I took a little 1.5 hour nap this morning and woke up to find that Quinn had been removed from her iv fluids. Quinn has problems with hypoglycemia. Removing her from the fluids pumping necessary sugars into her body can cause her sugars to drop very low and she could go into a coma from this! I told her nurse to lags the doctors right away and get her back on her fluids! She did, but she told me also that the doctors wanted to see how she tolerated clear liquids. That is not a problem, it you do not put a child with a j tube on clear liquids orally! She does not absorb nutrients the right way, plus you are giving her liquids that are just draining out of her anyway! She needs sugars. So, they decided to put her on pedialyte. Quinn has gotten hypoglycemic on just pedialyte for me, she needs more sugar than that, but I decided to not say anything. I was already a little pissed and I didn't want them to think I was a crazy mom. My mistake!
I went out to get some coffee and left Quinn in the playroom. When I came back, she was sleeping in her bed with her fingers all bandaged up from finger pricks. When Quinn is feeling well and I take her to the play room, she likes to b in there pretty much untimely it closes. So I knew something happened. The nurse comes in to tell me that Quinn went unconcious in the play room and she was hypoglycemic. I should have pushed hard to get her back on her fluids! My poor baby. She slept for 3 hours after they brought her sugars back up. When she woke up, I asked her what happened and she told me that she got sleepy and couldn't stay awake. Poor thing. Had they read her file, they would have known she was at risk for this. Quinn needs a constant source of nutrition in her!
By this time, I know they have no clue how to take care of my kiddo. So I talked to the resident and tried to explain that Quinn's underlying issue is mito. This is a multi-system involvement. You cannot just treat one Thing and ignore the other systems. I time him that I was going to email her mito doc and asked him that if he requests special blood work (more specifically a chem 14 and ketones) if they would do it. His response to me was that Quinn is being treated for her bowels and that her metabolic state is secondary. She isn't here.to have special tests done. I wanted to slap him. Her mito, which is metabolic, is the REASON her bowels are in the condition they are in! It is obvious they don't know how to treat her mito as a whole... They put my kid unconscious because they were obviously unaware of the affects of cutting off her nutrients so quickly! That is purely metabolic. He said they treat kids for what they are in the hospital for. He said that they don't have to run the tests the outside doctor recommends.
I just don't know what to do anymore. I feel like my kid is neither safe at home, nor in the hospital! How sad.
Quinn is still losing weight. She weighed 42lbs at the end of august. She is now 32lbs. I feel like she needs a new care plan and I feel like the best place to make that plan, and execute it is in the hospital, where it is suppose to be a controlled environment.
That's what we have been going through, in a nutshell.
Quinn wa started on her new, higher calorie formula. We are trying to see if she tolerates. If she does, we should go home Monday or Tuesday. If she does not tolerate, well, we are totally screwed. I just want to get out of here, where Quinn can recover without the risk of being hypoglycemic, and being fed foods she can't physically digest. What a freakshow.
There was a reason I was so apprehensive to just go home after being informed that Quinn's cultures for meningitis were clear. I was happy that she didn't have meningitis afterall, but I had a gut wrenching feeling that Quinn was not stable enough to be home, and that feeling was dead on.
A few hours after I posted that last update, Quinn started vomiting, profusely. She vomited every 5-10 minutes for three hours straight and continued to vomit into the next day. Despite my efforts to inform them that I had been concerned about her motiliy, they did not take it seriously until the vomiting would not stop. They did an Xray which showed she was very backed up with stool. They triedan enema, which did nothing. Quinn has been to the point for a month now where enemas don't work, at all. She won't even stool the flush out. It stays stuck up inside her. They tried giving her mirilax. It only caused her to vomit more. All the while, the doctor who was caring for her was not communicating with me at all. I got very frustrated with this and was emailing her gi and her mito doctor. Who were recommending different treatments. This attending did not like that I was consulting othere doctors and I believe I offended him in doing so. He belittled my suggestions and literally chuckled at my ideas of what was probably going on with her. He finally started her in golytely to try and clean out her bowel. I was elated when her care was turned over to the next doctor on Saturday morning.
It still has not been easy. Quinn originally came in for infection. When her bowels stopped working, it became a new issue, however these doctors do not look at my child as a whole. Quinn has mito. This is a multi-organ involvement! You cambria treat my child like any child coming in for just constipation. There is more to her care than that. Instead of looking through her records, they proceeded to write orders that were detrimental to Quinn's health. Quinn finally got cleaned out on Sunday morning, so they wanted to start her feeds. The first mistake: they ordered her a diet for age! When I learned of this, I informed them that Quinn's well being is dependant on a very specific diet. Had they bothered to read her file, they would have known that Quinn is only allowed a clear liquid diet and it is solely for her own pleasure. The liquids always get drained right out of her stomach and into a ferral bag. This is important because Quinn accumulates so much air and if it is not immediately drained, air gets trapped into her small intestines and can cause even further problems with her motility. It is essential that her stomach is left on a drain. The problem was fixed, but not entirely.
I took a little 1.5 hour nap this morning and woke up to find that Quinn had been removed from her iv fluids. Quinn has problems with hypoglycemia. Removing her from the fluids pumping necessary sugars into her body can cause her sugars to drop very low and she could go into a coma from this! I told her nurse to lags the doctors right away and get her back on her fluids! She did, but she told me also that the doctors wanted to see how she tolerated clear liquids. That is not a problem, it you do not put a child with a j tube on clear liquids orally! She does not absorb nutrients the right way, plus you are giving her liquids that are just draining out of her anyway! She needs sugars. So, they decided to put her on pedialyte. Quinn has gotten hypoglycemic on just pedialyte for me, she needs more sugar than that, but I decided to not say anything. I was already a little pissed and I didn't want them to think I was a crazy mom. My mistake!
I went out to get some coffee and left Quinn in the playroom. When I came back, she was sleeping in her bed with her fingers all bandaged up from finger pricks. When Quinn is feeling well and I take her to the play room, she likes to b in there pretty much untimely it closes. So I knew something happened. The nurse comes in to tell me that Quinn went unconcious in the play room and she was hypoglycemic. I should have pushed hard to get her back on her fluids! My poor baby. She slept for 3 hours after they brought her sugars back up. When she woke up, I asked her what happened and she told me that she got sleepy and couldn't stay awake. Poor thing. Had they read her file, they would have known she was at risk for this. Quinn needs a constant source of nutrition in her!
By this time, I know they have no clue how to take care of my kiddo. So I talked to the resident and tried to explain that Quinn's underlying issue is mito. This is a multi-system involvement. You cannot just treat one Thing and ignore the other systems. I time him that I was going to email her mito doc and asked him that if he requests special blood work (more specifically a chem 14 and ketones) if they would do it. His response to me was that Quinn is being treated for her bowels and that her metabolic state is secondary. She isn't here.to have special tests done. I wanted to slap him. Her mito, which is metabolic, is the REASON her bowels are in the condition they are in! It is obvious they don't know how to treat her mito as a whole... They put my kid unconscious because they were obviously unaware of the affects of cutting off her nutrients so quickly! That is purely metabolic. He said they treat kids for what they are in the hospital for. He said that they don't have to run the tests the outside doctor recommends.
I just don't know what to do anymore. I feel like my kid is neither safe at home, nor in the hospital! How sad.
Quinn is still losing weight. She weighed 42lbs at the end of august. She is now 32lbs. I feel like she needs a new care plan and I feel like the best place to make that plan, and execute it is in the hospital, where it is suppose to be a controlled environment.
That's what we have been going through, in a nutshell.
Quinn wa started on her new, higher calorie formula. We are trying to see if she tolerates. If she does, we should go home Monday or Tuesday. If she does not tolerate, well, we are totally screwed. I just want to get out of here, where Quinn can recover without the risk of being hypoglycemic, and being fed foods she can't physically digest. What a freakshow.
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Wednesday, September 28, 2011
in hospital again.
Ugh. My phone sucks. I tried writing this update about 4 times and if someone calls me, the content gets erased and even if I do save it, it won't paste it back in the content. Ggggrrr! Here's my last attempt.
This is for those who don't know what's been going on, and for those who do, here's the details. Forgive my grammar slaying.
Saturday, my sister and her son came into town from san Diego. Quinn had so Much fun playing with her cousins Matt, Aj and the twins. We usually leave right around the time that Quinn gets her night meds, but we decided to stay a little longer. Everyone was having so much fun. Little did I know the foreboding nature of this little visit.
On Sunday, Quinn woke up exceptionally early, which hasn't really been very abnormal lately, it sucks nevertheless. She usually just needs help going pee and then she sleeps for another hour or two. Well, this time, Quinn didn't want to go back to sleep. I was exhausted and so I just stuck some cartoons on the tube and tried to go back to sleep. Quinn was relentless though. She was irritable and bugging me. I feel bad because i didn't really treat her well this morning. I was frustrated that she wouldn't let me sleep. So, I finally crawled out of bed around 700am. She started complaining of her heart beating too fast, so I checked her blood sugar and it was 127... Perfect. I told Quinn that she was probably just going through her little SVT thing and her heart needed a rest so I had her lay down on the couch. I thought that was good enough and I went to lay down in my bed again to try and get some more sleep. But she came into my room about 20 minutes later and was crying and holding her head. She said that something was really wrong with her head and she really needed me. Ok, kiddo. Now I started to feel sort of bad. I checked her o2 sats and she was doing ok on her oxygen, but her heart rate was almost 150, so I just turned her tank up and told her to lay down. About 30 minutes later, she said her neck was really hurting her in the back and that her head was hurting really badly. By this point, she was crying. I tried to rub her neck, but that was so painful, it caused her to scream. So km like... Alright, I will just check your temp. Het temp was 102.8. It surprised me! Her head didn't feel warm, hut when I felt the rest of her body, she was really burning up. Ok... I definitely just lost the mother of the year award there. You know you have a medically complex kid when she's not feeling.g well and the LAST thing you think to check is her temperature.
Quinn has mito. She's sort of expected to get sick and we deal with A LOT here at home, but when this kid gets a fever, its usually pretty bad. And she declined very rapidly. I kept her home for two hours after I took the first temp, hoping things would calm down some, but she looked really bad and her head and neck pain was intense. When my dad got home later that morning, I informed him that I was taking Quinn to the er. Quinn couldn't even hold up her head, her temp was still 102.8 and she was looking pretty horrid. He helped me get her into the car and we headed in.
She was still feverish when we got there. She looked incredibly sick and dry. Her blood pressure was very low. She was started on fluids and needed boluses for her pressure. They did a CAT scan, chest x ray and spinal tap. Her wbc was extremely high (30,000) it should be 11,000 or less. Her labs were showing that she was well hydrated, but she was so dry she wasn't even crying tears. We spent 10 hours in this er trying to get her transferred. Finally the ambulance came at 1130pm. The doctor at the er said that her wbc was so high, it Qs an indication of her fighting a severe bacterial infection, but everything was clean (chest, urine, cat scan, and the spinal tap had no wbc in it). The doctor still felt that she had meningitis.
So, she had been sleeping like crazy. The ambulance comes in to take her and the medic walks in and is like... So Quinn has mitochondriolitis? I'm sorry, I couldn't help it! I just laughed at him! I asked him if that term made sense and he was like no, but what is it? And I asked him if he knew what mitochondria are and he did, surprisngly. Lol! I said that I didn't even think it was possible to have infected mitochindria, just defective. I am sure I offended him as he was pretty cold to me after that. Woops! I didn't mean to, I just found it comical. I followed behind the ambulance. About 45mins outside the children's hospital, the ambulance pulls over... I'm freaking out! The emt gets out of the driver seat, runs toward the back and the medic is kneeling over my kid, waving me in. Wow! I was so scared! I go into the back of the ambulance and she is crying and writhing in pain. The emt says that Quinn is in a lot of pain and they needed to give her morphine, but her iv was completely blown. Whew! What a relief! Just a new iv... Thank god! So I helped calm her down while she got her iv and then we noticed that her lower stomach was extremely distended. This was a new symptom since we had left the er. Medic was worried so he wanted to book it to loma Linda, so we got back on the road.
Quinn's fever had been broken for a few hours after we got to loma Linda. She was still visibly sick, but she was able to wake up enough to answer questions and was coherent. So, I tell about 5 people what was going on. and they thought she had meningitis too. They said no matter what, her wbc is high enough to admit her on antibiotics. She was really sickly looking too, though.
So, we got admitted to loma Linda. She was started on more iv fluids and antibiotics. She had an abdominal series Xray which was surprisingly fantastic! First x rays I've ever seen that looked so awesome. She just was full of poo, but who cares about that! Lol.
Monday was pretty rough on her. She blew another iv. She slept the whole day. She looked so yucky. She had a rash around her eyes, she was just sickly looking.
Tuesday, she was able to start some clear liquids. I woke up to her eating eggs and toast. I started raising hell! Who the hell ordered her a diet for age!? Nobody really knows what happened. Her chart showed her on a liquid diet. It was a mistake. But she paid for it. Within an hour she was in severe pain, shaking, headache. Her tummy was feeling horrible. Nothing helped to calm her down. Eventually we had to drugged to sleep. We had to put her g on suction because she had chunks of bread on there clogging up her drain. It was just horrible. She was right back to looking like doo doo. Not only that, but in the evening, she still had not peed did about 10 hours. I had been asking her all day if she felt like she needed to pee and she kept saying no. So they ordered a bladder scan, which showed that she had about 600ml of fluid in her bladder. We threatened to cath her and made her sit on the toilet and she finally peed 300ml out. Then, the doctor comes in and tells me that if she's not on a set schedule, kids will hold their pee for days. I wanted to slap him. That is so not true! I don't know what kind of kid would do that. If anything, they will hold it too long and then pee their pants. anyway, she at least peed. At the end of the night, her head started hurting her again and she started vomiting. Tylenol helps.
Today, things have been pretty good. She still is having headaches. She hasn't pooped in almost a whole week though.
They started her on a very high calorie formula because she has lost 4 lbs. She. Blew 4 iv since we have been here and right before they started procedure for a picc line, we got news that her spinal tap did not grow any cultures. So they just discontinued her antibiotics! Yahoo. The only thing is, we have no idea where her infection came from. They haven't even taken blood to ensure that she has cleared the infection... Before we get discharged ok going to make sure that her wbc is back to normal. She has been getting tylenol a round the clock for her headaches, which could cover up fevers. So I just want to be sure before we leave that she is no longer infected.I think that's a reasonable request considering how sick she got. She definitely looks like her normal sled today though. I'm concerned that she hasn't pooped either, but at the same time, we deal with that crap all the time.
So, all in all, it looks like we will be going home soon. What an ordeal!
This is for those who don't know what's been going on, and for those who do, here's the details. Forgive my grammar slaying.
Saturday, my sister and her son came into town from san Diego. Quinn had so Much fun playing with her cousins Matt, Aj and the twins. We usually leave right around the time that Quinn gets her night meds, but we decided to stay a little longer. Everyone was having so much fun. Little did I know the foreboding nature of this little visit.
On Sunday, Quinn woke up exceptionally early, which hasn't really been very abnormal lately, it sucks nevertheless. She usually just needs help going pee and then she sleeps for another hour or two. Well, this time, Quinn didn't want to go back to sleep. I was exhausted and so I just stuck some cartoons on the tube and tried to go back to sleep. Quinn was relentless though. She was irritable and bugging me. I feel bad because i didn't really treat her well this morning. I was frustrated that she wouldn't let me sleep. So, I finally crawled out of bed around 700am. She started complaining of her heart beating too fast, so I checked her blood sugar and it was 127... Perfect. I told Quinn that she was probably just going through her little SVT thing and her heart needed a rest so I had her lay down on the couch. I thought that was good enough and I went to lay down in my bed again to try and get some more sleep. But she came into my room about 20 minutes later and was crying and holding her head. She said that something was really wrong with her head and she really needed me. Ok, kiddo. Now I started to feel sort of bad. I checked her o2 sats and she was doing ok on her oxygen, but her heart rate was almost 150, so I just turned her tank up and told her to lay down. About 30 minutes later, she said her neck was really hurting her in the back and that her head was hurting really badly. By this point, she was crying. I tried to rub her neck, but that was so painful, it caused her to scream. So km like... Alright, I will just check your temp. Het temp was 102.8. It surprised me! Her head didn't feel warm, hut when I felt the rest of her body, she was really burning up. Ok... I definitely just lost the mother of the year award there. You know you have a medically complex kid when she's not feeling.g well and the LAST thing you think to check is her temperature.
Quinn has mito. She's sort of expected to get sick and we deal with A LOT here at home, but when this kid gets a fever, its usually pretty bad. And she declined very rapidly. I kept her home for two hours after I took the first temp, hoping things would calm down some, but she looked really bad and her head and neck pain was intense. When my dad got home later that morning, I informed him that I was taking Quinn to the er. Quinn couldn't even hold up her head, her temp was still 102.8 and she was looking pretty horrid. He helped me get her into the car and we headed in.
She was still feverish when we got there. She looked incredibly sick and dry. Her blood pressure was very low. She was started on fluids and needed boluses for her pressure. They did a CAT scan, chest x ray and spinal tap. Her wbc was extremely high (30,000) it should be 11,000 or less. Her labs were showing that she was well hydrated, but she was so dry she wasn't even crying tears. We spent 10 hours in this er trying to get her transferred. Finally the ambulance came at 1130pm. The doctor at the er said that her wbc was so high, it Qs an indication of her fighting a severe bacterial infection, but everything was clean (chest, urine, cat scan, and the spinal tap had no wbc in it). The doctor still felt that she had meningitis.
So, she had been sleeping like crazy. The ambulance comes in to take her and the medic walks in and is like... So Quinn has mitochondriolitis? I'm sorry, I couldn't help it! I just laughed at him! I asked him if that term made sense and he was like no, but what is it? And I asked him if he knew what mitochondria are and he did, surprisngly. Lol! I said that I didn't even think it was possible to have infected mitochindria, just defective. I am sure I offended him as he was pretty cold to me after that. Woops! I didn't mean to, I just found it comical. I followed behind the ambulance. About 45mins outside the children's hospital, the ambulance pulls over... I'm freaking out! The emt gets out of the driver seat, runs toward the back and the medic is kneeling over my kid, waving me in. Wow! I was so scared! I go into the back of the ambulance and she is crying and writhing in pain. The emt says that Quinn is in a lot of pain and they needed to give her morphine, but her iv was completely blown. Whew! What a relief! Just a new iv... Thank god! So I helped calm her down while she got her iv and then we noticed that her lower stomach was extremely distended. This was a new symptom since we had left the er. Medic was worried so he wanted to book it to loma Linda, so we got back on the road.
Quinn's fever had been broken for a few hours after we got to loma Linda. She was still visibly sick, but she was able to wake up enough to answer questions and was coherent. So, I tell about 5 people what was going on. and they thought she had meningitis too. They said no matter what, her wbc is high enough to admit her on antibiotics. She was really sickly looking too, though.
So, we got admitted to loma Linda. She was started on more iv fluids and antibiotics. She had an abdominal series Xray which was surprisingly fantastic! First x rays I've ever seen that looked so awesome. She just was full of poo, but who cares about that! Lol.
Monday was pretty rough on her. She blew another iv. She slept the whole day. She looked so yucky. She had a rash around her eyes, she was just sickly looking.
Tuesday, she was able to start some clear liquids. I woke up to her eating eggs and toast. I started raising hell! Who the hell ordered her a diet for age!? Nobody really knows what happened. Her chart showed her on a liquid diet. It was a mistake. But she paid for it. Within an hour she was in severe pain, shaking, headache. Her tummy was feeling horrible. Nothing helped to calm her down. Eventually we had to drugged to sleep. We had to put her g on suction because she had chunks of bread on there clogging up her drain. It was just horrible. She was right back to looking like doo doo. Not only that, but in the evening, she still had not peed did about 10 hours. I had been asking her all day if she felt like she needed to pee and she kept saying no. So they ordered a bladder scan, which showed that she had about 600ml of fluid in her bladder. We threatened to cath her and made her sit on the toilet and she finally peed 300ml out. Then, the doctor comes in and tells me that if she's not on a set schedule, kids will hold their pee for days. I wanted to slap him. That is so not true! I don't know what kind of kid would do that. If anything, they will hold it too long and then pee their pants. anyway, she at least peed. At the end of the night, her head started hurting her again and she started vomiting. Tylenol helps.
Today, things have been pretty good. She still is having headaches. She hasn't pooped in almost a whole week though.
They started her on a very high calorie formula because she has lost 4 lbs. She. Blew 4 iv since we have been here and right before they started procedure for a picc line, we got news that her spinal tap did not grow any cultures. So they just discontinued her antibiotics! Yahoo. The only thing is, we have no idea where her infection came from. They haven't even taken blood to ensure that she has cleared the infection... Before we get discharged ok going to make sure that her wbc is back to normal. She has been getting tylenol a round the clock for her headaches, which could cover up fevers. So I just want to be sure before we leave that she is no longer infected.I think that's a reasonable request considering how sick she got. She definitely looks like her normal sled today though. I'm concerned that she hasn't pooped either, but at the same time, we deal with that crap all the time.
So, all in all, it looks like we will be going home soon. What an ordeal!
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Friday, September 16, 2011
Appointments!
On Wednesday, Quinn had her 6 month follow-up with her neurologist. Quinn's original neurologist left the office at the end of 2010 and so at the beginning of the year, she started seeing another one. We only had one visit with him and he was suppose to be fairly educated in mitochondrial diseases. I had no qualms with him at our first appointment, i just had no strong opinion of like or dislike for him, which is neither good nor bad. So we were suppose to see him on Wednesday. i'm a mom full of many appointments and there's a lot that has gone on in the past few months. Apparently, i wrote the appointment time down wrong. It was suppose to be at 1pm and I arrived at about 140pm thinking that the appointment was at 2. I was wrong! So after waiting in the office for 45 minutes to see if he would still see us, i was informed that he wouldn't! And that we had to reschedule. I couldn't believe this!!! I drove 1.5 hours down the hill to go to this appointment. Oh, i started ranting at the poor receptionists and nurses. they were all so nice and very understanding, but it's the doctor who makes the decision, not them. It's not even like i really needed much of his time! we have to see a neurologist every 6 months for insurance purposes, plus, all i really needed was to discuss a wean from one of her three seizure medications. Still, he refused to see us. So, I talked to the nurse and I told her that I wouldn't be coming back to see this doctor and asked her if there were any doctors in the office that were willing to see us at such a short notice. By this point, I had fired this doctor and was going to have to start doctor shopping, might as well start at the same office and cross my fingers, hoping I got lucky. WE DID!!! Another neuro decided that he would see us. I must say, it was probably meant to happen this way because I couldn't be any happier with the new neurologist. He is definitely a better fit for us. He was more informative, more helpful and he even read over her last clinical note before seeing us (which is more than the last one did for us). He did a thorough exam on her and noted, yet again, her right sided weakness, which has probably gotten a little worse as time goes on. He said she's much slower on the right side as well and she has a slightly droopy eye on the right side. I told him that her previous neurologist was only putting in her clinical notes that she had "probable" mitochondrial disease, which I don't entirely dispute since we don't have a definitive defective gene, however putting "probable" in the diagnosis has caused us to lose some coverage that we once had (for wheelchair, braces, therapies and some medications). So, he is clearing it up for us. She has a lot of Cerebral Palsy characteristics, which is likely not at all CP, but is definitely related to her mitochondrial disease. He gave her a diagnosis of CP because insurance will pick up coverage for her chair and braces for that. And he gave her a diagnosis for "disorders of the mitochondrial metabolism". Thanks doc! this should help us out a lot! Otherwise, this was really our first appointment with him so he couldn't really comment on any possible changes in her. He also gave us the ok to wean her off one of her seizure medications!!! yahoo!!! As far as we can tell, Quinn has been seizure free since November. I am so happy to be able to take her off another medication. Oh, and we also discussed a muscle biopsy for Quinn. He supports the idea for us to have a muscle biopsy on her because then insurance can't dispute her diagnosis ever again. We will discuss this with her mitochondiral doctor next month because it is quite possible that he will want to have it done at his hospital.
Quinn also saw her GI doctor. This appointment was basically just an update, but we also wanted him to be able to order some new supplies for Quinn. Quinn needs to have her extensions secured very well at school. Unfortunately, the only dressings she has to secure the extension is paper tape and this is ripping up her stomach! Even the paper tape itself causes cuts to appear on her tummy, ripping the tape off every day is giving her a rash and etc... So we wanted a device that can stay on her skin for at least a week but had a flap that could be opened and closed. Someone mentioned to me the GripLok device and so that's what we asked for the GI doctor to order. Plus, we need urine bags for her drain at school, some tegaderm and some additional tape and gauzes to be sent in addition to her monthly order of supplies. I do hope the insurance company is willing to fund these as she truly needs them for school. Quinn has also lost 3 pounds. The 3 pounds weight loss in less than a month is truly a bad sign. You can sort of tell that she has lost a bit of weight too. I am hoping that the weight loss is just from draining her... so in other words, she no longer has stagnant fluid just sitting in her body, therefore her current weight is probably the most accurate reflection of what she has always been. Quinn has had a yeast rash on her butt for the past 2 months. Nystatin does nothing for it other than to keep it from getting really nasty. It's still there however and so he ordered some Diflucan (an anti-fungal) to treat her yeast as she smells completely rotten under there. We have also been having a hard time getting mirilax into her. Quinn is tolerating 40ml/hr in her J tube. This is her only source of nutrition. She has a caloric increase of 30kcal Vivonex running into her system 24 hours a day. I tried mixing her mirilax into her formula, but it completely separates the formula from the fluids! No bueno! So then I tried mixing just hte mirilax and running it into her J tube at a faster rate, but this is causing her to miss out on some much needed calories, which is also not good right now. We have previously tried Generlac for Quinn, but I noticed some blood sugar instabilities when she was on that. At this point, we don't really have a choice. So we are going to add Generlac (Lactulose) into her medication regimen, up to 50 ml a day along with her Senna to hopefully make up for the lack of mirilax. However, he is also ordering some boost fruit juice things that have calories in it so we can run mirilax mixed with that so she doesn't lose out on so many calories. We also no longer have to do the enemas as they simply don't work. Her colon contracts when it contracts and the fact that she holds the enemas in for days at a time (as in, she doesn't even push the flush out) can actually cause more harm than good. Simply put, Quinn will poop when she poops and if she doesn't poop for 2-3 weeks, we go inpatient. He took some blood to check on her nutritional status and I should get those results today. We go back in to see him in 3 months.
Quinn also saw her GI doctor. This appointment was basically just an update, but we also wanted him to be able to order some new supplies for Quinn. Quinn needs to have her extensions secured very well at school. Unfortunately, the only dressings she has to secure the extension is paper tape and this is ripping up her stomach! Even the paper tape itself causes cuts to appear on her tummy, ripping the tape off every day is giving her a rash and etc... So we wanted a device that can stay on her skin for at least a week but had a flap that could be opened and closed. Someone mentioned to me the GripLok device and so that's what we asked for the GI doctor to order. Plus, we need urine bags for her drain at school, some tegaderm and some additional tape and gauzes to be sent in addition to her monthly order of supplies. I do hope the insurance company is willing to fund these as she truly needs them for school. Quinn has also lost 3 pounds. The 3 pounds weight loss in less than a month is truly a bad sign. You can sort of tell that she has lost a bit of weight too. I am hoping that the weight loss is just from draining her... so in other words, she no longer has stagnant fluid just sitting in her body, therefore her current weight is probably the most accurate reflection of what she has always been. Quinn has had a yeast rash on her butt for the past 2 months. Nystatin does nothing for it other than to keep it from getting really nasty. It's still there however and so he ordered some Diflucan (an anti-fungal) to treat her yeast as she smells completely rotten under there. We have also been having a hard time getting mirilax into her. Quinn is tolerating 40ml/hr in her J tube. This is her only source of nutrition. She has a caloric increase of 30kcal Vivonex running into her system 24 hours a day. I tried mixing her mirilax into her formula, but it completely separates the formula from the fluids! No bueno! So then I tried mixing just hte mirilax and running it into her J tube at a faster rate, but this is causing her to miss out on some much needed calories, which is also not good right now. We have previously tried Generlac for Quinn, but I noticed some blood sugar instabilities when she was on that. At this point, we don't really have a choice. So we are going to add Generlac (Lactulose) into her medication regimen, up to 50 ml a day along with her Senna to hopefully make up for the lack of mirilax. However, he is also ordering some boost fruit juice things that have calories in it so we can run mirilax mixed with that so she doesn't lose out on so many calories. We also no longer have to do the enemas as they simply don't work. Her colon contracts when it contracts and the fact that she holds the enemas in for days at a time (as in, she doesn't even push the flush out) can actually cause more harm than good. Simply put, Quinn will poop when she poops and if she doesn't poop for 2-3 weeks, we go inpatient. He took some blood to check on her nutritional status and I should get those results today. We go back in to see him in 3 months.
Will someone please tell Zevix to fix these poorly made bags!!!?
Friday, September 9, 2011
School
Quinn is an AMAZING child! She has so much to offer the world! She has had such a hard life. Some days I am in awe of her strength and her courageous outlook on life! She never gives up! she never feels sorry for herself! she never lets anything bring her down! she is always smiling, always happy, always making other people feel as if they are worth the world to her! Quinn's personality could move mountains. I know this about my child, but I am also her mother. I'm so bias! But to be able to hear from the mouths of those around her that she is the SAME way when I'm not around to protect her, to advocate for her, to be her voice... makes me feel so very proud.
I expressed in Quinn's IEP meeting at the start of school how I did not want her disabilities to affect her academically. About how I knew that she has the ability to learn and grow like any other child, but I didn't want her to be treated any differently academically just because outwardly, she looks like she might need some help. She is allowed to be in a mainstream classroom with an aide, who would help her move around and keep her focused on her work. I knew that there was a large possibility that she could have some learning disabilities, but I did not express this in the meeting because i wanted them to be able to identify them if they were there, not to be looking for them just because I mentioned I was worried about it.
When Quinn started Kindergarten, I'd be lying if I said that I wasn't worried about her. Worried in so many ways. Quinn goes to school in a wheelchair stroller. She is connected to her feeding tube and a stomach drain the entire time that she is in the classroom. She is also connected to her oxygen for most of the time. She has 3 tubes hanging off her body. Her formula stinks... horribly. She has to wear pull ups due to accidents and she is obviously slower than any of the other children. She requires regular pulse ox checks and blood glucose checks. she sometimes needs to leave early and spend time in the nurse's office. Sometimes, her body is too tired to participate in recess and PE. I do my very best to keep her looking and smelling like a normal kid. I have her wear long shirts to cover up her pull up and I spray her down with smelly good body spray and lather her in smelly good lotion every morning. As well as put a dryer sheet in her backpack to mask the smell some. I worried about how she would do academically. I worried that she would have a hard time making friends or that she would feel like an outcast. I worried that she would feel different.
Quinn has been having some trouble in school with breathing and has needed to sit out a lot for recess because of this. Her oxygen gets too low. Her aide is trained to recognize Quinn's symptoms and to read the pulse oximeter accurately. Quinn's sats have sometimes been sitting in the 70s and the aide said that when her sats are low, it is very evident in her demeanor, energy, and on her face. she gets very pale and she gets really dark circles under her eyes and her breathing changes (symptoms reported by her aide). This worries me a little that school is taking a lot out of her, but turning the tank up enough to bring her saturations back into normal range seems to help her. Thankfully, she does have oxygen to help her during these times. She is also pretty exhausted when she gets home. Draining her stomach does work for her very well, but she does still come home complaining of some stomach pain and she does still get distended easily. She is exhausted too when she gets home, but we really expected this.
So, when Quinn's teacher called me this evening, I was expecting the worst. I was expecting to hear that she was struggling to keep up with the children, that she was feeling different, that she was not talkative and that she was not doing well academically. I was expecting for the teacher to express concerns about how Quinn is fitting into the mainstream classroom. Much to my surprise, this conversation went a completely different way! She said that Quinn has been one of the strongest academically. She is recognizing her ABC's and 123's. She is able to count the numbers very well. She is retaining information! Her aide even said that she thinks the reason that Quinn is somewhat slow with her work is because she is bored. She said Quinn already knows what is being taught and so she feels that Quinn is bored, which is why i see her come home with incomplete work, but a bunch of doodles all over the paper. ( this to me is unacceptable anyway and Q knows it, but still makes me proud! ) She also said that she fits in very well with the children! She makes new friends every day! She is involved in a "girl's clubhouse". Apparently, these girls made friends and they all sit under the playground thing and hang out during recess. They are very good about helping Quinn when running around. Quinn is definitely slower than the others. The other day, they were all holding hands and trotting in a big line. Well, they were moving too fast for Quinn and Quinn fell down really hard and popped her feeding bag open and had to go home from school early. Apparently, the entire classroom was very worried about her because she never came back after she went to the nurse's office. Sometimes, the children inquire about her attachments, but they never make fun of her for it. They are just genuinely curious and most of them know that Quinn just needs extra things to help her be as healthy as they all are. So today, I lay my worries to rest.
I am so proud of my baby girl! She is truly an amazing human being! She has a heart of gold, and I do hope she keeps it forever. She has a voice that she knows how to use. She has the strength of 10,000 men. She has a powerful presence and she will always persevere. I love my kid and I am so proud to be her mommy!
I expressed in Quinn's IEP meeting at the start of school how I did not want her disabilities to affect her academically. About how I knew that she has the ability to learn and grow like any other child, but I didn't want her to be treated any differently academically just because outwardly, she looks like she might need some help. She is allowed to be in a mainstream classroom with an aide, who would help her move around and keep her focused on her work. I knew that there was a large possibility that she could have some learning disabilities, but I did not express this in the meeting because i wanted them to be able to identify them if they were there, not to be looking for them just because I mentioned I was worried about it.
When Quinn started Kindergarten, I'd be lying if I said that I wasn't worried about her. Worried in so many ways. Quinn goes to school in a wheelchair stroller. She is connected to her feeding tube and a stomach drain the entire time that she is in the classroom. She is also connected to her oxygen for most of the time. She has 3 tubes hanging off her body. Her formula stinks... horribly. She has to wear pull ups due to accidents and she is obviously slower than any of the other children. She requires regular pulse ox checks and blood glucose checks. she sometimes needs to leave early and spend time in the nurse's office. Sometimes, her body is too tired to participate in recess and PE. I do my very best to keep her looking and smelling like a normal kid. I have her wear long shirts to cover up her pull up and I spray her down with smelly good body spray and lather her in smelly good lotion every morning. As well as put a dryer sheet in her backpack to mask the smell some. I worried about how she would do academically. I worried that she would have a hard time making friends or that she would feel like an outcast. I worried that she would feel different.
Quinn has been having some trouble in school with breathing and has needed to sit out a lot for recess because of this. Her oxygen gets too low. Her aide is trained to recognize Quinn's symptoms and to read the pulse oximeter accurately. Quinn's sats have sometimes been sitting in the 70s and the aide said that when her sats are low, it is very evident in her demeanor, energy, and on her face. she gets very pale and she gets really dark circles under her eyes and her breathing changes (symptoms reported by her aide). This worries me a little that school is taking a lot out of her, but turning the tank up enough to bring her saturations back into normal range seems to help her. Thankfully, she does have oxygen to help her during these times. She is also pretty exhausted when she gets home. Draining her stomach does work for her very well, but she does still come home complaining of some stomach pain and she does still get distended easily. She is exhausted too when she gets home, but we really expected this.
So, when Quinn's teacher called me this evening, I was expecting the worst. I was expecting to hear that she was struggling to keep up with the children, that she was feeling different, that she was not talkative and that she was not doing well academically. I was expecting for the teacher to express concerns about how Quinn is fitting into the mainstream classroom. Much to my surprise, this conversation went a completely different way! She said that Quinn has been one of the strongest academically. She is recognizing her ABC's and 123's. She is able to count the numbers very well. She is retaining information! Her aide even said that she thinks the reason that Quinn is somewhat slow with her work is because she is bored. She said Quinn already knows what is being taught and so she feels that Quinn is bored, which is why i see her come home with incomplete work, but a bunch of doodles all over the paper. ( this to me is unacceptable anyway and Q knows it, but still makes me proud! ) She also said that she fits in very well with the children! She makes new friends every day! She is involved in a "girl's clubhouse". Apparently, these girls made friends and they all sit under the playground thing and hang out during recess. They are very good about helping Quinn when running around. Quinn is definitely slower than the others. The other day, they were all holding hands and trotting in a big line. Well, they were moving too fast for Quinn and Quinn fell down really hard and popped her feeding bag open and had to go home from school early. Apparently, the entire classroom was very worried about her because she never came back after she went to the nurse's office. Sometimes, the children inquire about her attachments, but they never make fun of her for it. They are just genuinely curious and most of them know that Quinn just needs extra things to help her be as healthy as they all are. So today, I lay my worries to rest.
I am so proud of my baby girl! She is truly an amazing human being! She has a heart of gold, and I do hope she keeps it forever. She has a voice that she knows how to use. She has the strength of 10,000 men. She has a powerful presence and she will always persevere. I love my kid and I am so proud to be her mommy!
Wednesday, August 24, 2011
Got out on Monday
We were able to break out on Monday. I'll always go to Loma Linda. I think the residents and doctors communicate very well (minus that stay in November, but I partially feel that that stay is the reason we have 0 problems anymore). Our regular GI was able to give the attending her history and that despite how she looks, she has a lot going on in the inside. I love our GI doctor. He's never short of amazing.
So, we spent all week decompressing her. She was getting long-cath enemas every 12 hours, which were doing absolutely nothing for her. She wasn't even pushing out the flush that was flushing her colon. Everything was just staying up in her butt. She literally had no movement in her colon at all. So after 2 days of this complete failure, we had to stop doing the enemas. After a few days of total gut rest, we tried to start some oral food of clear liquid and clamp her drains. As soon as we started a little bit of oral food, Quinn's stomach started to get very distended again. The GI doctor saw her the morning before we started oral liquids and the evening after our trial and when he saw her he was like, "she wasn't this distended this morning!". Nope, she wasn't. So, he got a syringe and an extension and started venting her belly and A LOT came out. So, his conclusion: He feels that a lot of the air that gets trapped in her small and large bowel are not just from pseudo episodes, but also from her stomach not working very much at all. It accumulates food and air. Basically, she has a pretty nasty case of gastroparesis. So basically, she is only allowed to have a liquid diet by mouth, and only for her own pleasure. We have to keep her drain opened 24/7. So when she eats her clear liquids, it just goes right into the drainage bag. First, we did a trial to be sure that this is what she needed. Well, it worked! Quinn has had the flattest belly for the longest period of time that i have ever seen. We were also able to increase her rate in her J tube from 30 to 40 and this gives her a good level of hydration and nutrition. we spent a week in.
During that week, Quinn was having episodes... I'd call them mini-episodes of just a hiccup of gut shut downs. She would drain a lot of green bile. Her belly would randomly get distended and then go down again and she also wasn't pooping. Speaking of not pooping, she still hasn't since we left hte hospital. Unfortunately, if we were to keep Quinn in the hospital for all of her mini pseudo obstruction episodes, we would never leave. One of the things the doctors kept telling me when I'd express my concerns for the minor things (stuff we deal with at home all the time), they all just told me that unfortunately, Quinn has a classic case of pseudo obstruction. There is no other treatment for it. Sometimes she works, and sometimes she doesn't. And that has been the case in the course of her hospital stay as well. We need to just deal with the minor and keep bringing her in for the major. They also said that I was doing all the right things I needed to be doing at home. Made me feel better.
It's HARD! and it's WORK to keep this kid hooked up to all this crap, monitor ketones every night, monitor fluid output vs input. Blood sugars, to keep all her lines from getting tangled all the time. Despite all the attachments that come with her, the most difficult thing that both her and I have had to deal with is the fact that she can no longer eat. It's hard to eat in front of her! she literally eye balls my food. and she gets very sad. I think she's starting to understand. I know she feels better and i know she knows she feels better, but its' so hard. She LOVES to eat. I enjoyed giving her even just tiny amounts of food by mouth to satisfy her. Now it's just liquids and lollipops. Poor kid. I feel so bad for her :( I don't understand why she has to go through this. and I don't understand why my kid can't just be one of those who hates to eat. This would be so much easier if she did. I never quite understood how a kid can have such a terrible case of gastroparesis, yet still be so incredibly hungry all the time. That stumps the doctors too, and unfortunately, there are no meds that she can take to suppress appetite.
Anyway, she has a cardiology appointment coming up. For a second opinion. I feel she needs to be monitored in cardio regularly. I think that her heart just has a huge demand. Every time we run into trouble, her heart rate is usually the first sign that we have. Plus, she complains of chest pains accompanied with a high heart rate a lot! most of the time, it's because her blood sugars are low, but sometimes, it's just a random occurrence, like this morning. I'm not sure if they can even do anything about it, but I'd like to double check... again to ensure that her heart is healthy because I just have a strong suspicion that her last cardiologist was very dismissive with her high heart rates. I think she at least needs to be followed yearly to ensure there are no changes. Her heart murmur is audible again too... though I am certain that it is benign.
Quinn also had an IEP for school. I can't believe it! she's starting Kindergarten!!! my kid is going to be so big! Ok, so i have heard of people having a lot of problems in IEP's and making sure their children's needs are properly met. Her school psychologist totally set everything up for her! I walked into the IEP expecting to fight for an aide for her, but no. I didn't have to fight for anything. Quinn qualifies for OI (Other Impaired). She gets a 1:1 aide the whole time she is at school to help her. Plus, she gets to have the school bus pick her up and drop her off right in front of my house! Quinn will be going to school in her chair. She has a lot of attachments. In school, she will need to be on her feeding pump, her drainage bag, and her oxygen pretty much the whole time. She needs to have the blood sugars monitored and her o2 sats for the times when she is able to come off the oxygen. She also needs someone to help her with the drainage bag (decompressing the air, emptying the bag when it gets full and putting it in and out of the fanny pack). We got a fanny pack for her drain, but she can't take the drain off her chair and put it in there and this aide is suppose to help her with all that stuff. I feel so comfortable with Quinn being at school! she's going to have a great time! I just hope I can keep her from stinking. Her formula smells bad. I don't know how to contain the stench. I'm going to have to rig something up for her within the next two months to try and conceal it because I don't want her being made fun of.
So, we spent all week decompressing her. She was getting long-cath enemas every 12 hours, which were doing absolutely nothing for her. She wasn't even pushing out the flush that was flushing her colon. Everything was just staying up in her butt. She literally had no movement in her colon at all. So after 2 days of this complete failure, we had to stop doing the enemas. After a few days of total gut rest, we tried to start some oral food of clear liquid and clamp her drains. As soon as we started a little bit of oral food, Quinn's stomach started to get very distended again. The GI doctor saw her the morning before we started oral liquids and the evening after our trial and when he saw her he was like, "she wasn't this distended this morning!". Nope, she wasn't. So, he got a syringe and an extension and started venting her belly and A LOT came out. So, his conclusion: He feels that a lot of the air that gets trapped in her small and large bowel are not just from pseudo episodes, but also from her stomach not working very much at all. It accumulates food and air. Basically, she has a pretty nasty case of gastroparesis. So basically, she is only allowed to have a liquid diet by mouth, and only for her own pleasure. We have to keep her drain opened 24/7. So when she eats her clear liquids, it just goes right into the drainage bag. First, we did a trial to be sure that this is what she needed. Well, it worked! Quinn has had the flattest belly for the longest period of time that i have ever seen. We were also able to increase her rate in her J tube from 30 to 40 and this gives her a good level of hydration and nutrition. we spent a week in.
During that week, Quinn was having episodes... I'd call them mini-episodes of just a hiccup of gut shut downs. She would drain a lot of green bile. Her belly would randomly get distended and then go down again and she also wasn't pooping. Speaking of not pooping, she still hasn't since we left hte hospital. Unfortunately, if we were to keep Quinn in the hospital for all of her mini pseudo obstruction episodes, we would never leave. One of the things the doctors kept telling me when I'd express my concerns for the minor things (stuff we deal with at home all the time), they all just told me that unfortunately, Quinn has a classic case of pseudo obstruction. There is no other treatment for it. Sometimes she works, and sometimes she doesn't. And that has been the case in the course of her hospital stay as well. We need to just deal with the minor and keep bringing her in for the major. They also said that I was doing all the right things I needed to be doing at home. Made me feel better.
It's HARD! and it's WORK to keep this kid hooked up to all this crap, monitor ketones every night, monitor fluid output vs input. Blood sugars, to keep all her lines from getting tangled all the time. Despite all the attachments that come with her, the most difficult thing that both her and I have had to deal with is the fact that she can no longer eat. It's hard to eat in front of her! she literally eye balls my food. and she gets very sad. I think she's starting to understand. I know she feels better and i know she knows she feels better, but its' so hard. She LOVES to eat. I enjoyed giving her even just tiny amounts of food by mouth to satisfy her. Now it's just liquids and lollipops. Poor kid. I feel so bad for her :( I don't understand why she has to go through this. and I don't understand why my kid can't just be one of those who hates to eat. This would be so much easier if she did. I never quite understood how a kid can have such a terrible case of gastroparesis, yet still be so incredibly hungry all the time. That stumps the doctors too, and unfortunately, there are no meds that she can take to suppress appetite.
Anyway, she has a cardiology appointment coming up. For a second opinion. I feel she needs to be monitored in cardio regularly. I think that her heart just has a huge demand. Every time we run into trouble, her heart rate is usually the first sign that we have. Plus, she complains of chest pains accompanied with a high heart rate a lot! most of the time, it's because her blood sugars are low, but sometimes, it's just a random occurrence, like this morning. I'm not sure if they can even do anything about it, but I'd like to double check... again to ensure that her heart is healthy because I just have a strong suspicion that her last cardiologist was very dismissive with her high heart rates. I think she at least needs to be followed yearly to ensure there are no changes. Her heart murmur is audible again too... though I am certain that it is benign.
Quinn also had an IEP for school. I can't believe it! she's starting Kindergarten!!! my kid is going to be so big! Ok, so i have heard of people having a lot of problems in IEP's and making sure their children's needs are properly met. Her school psychologist totally set everything up for her! I walked into the IEP expecting to fight for an aide for her, but no. I didn't have to fight for anything. Quinn qualifies for OI (Other Impaired). She gets a 1:1 aide the whole time she is at school to help her. Plus, she gets to have the school bus pick her up and drop her off right in front of my house! Quinn will be going to school in her chair. She has a lot of attachments. In school, she will need to be on her feeding pump, her drainage bag, and her oxygen pretty much the whole time. She needs to have the blood sugars monitored and her o2 sats for the times when she is able to come off the oxygen. She also needs someone to help her with the drainage bag (decompressing the air, emptying the bag when it gets full and putting it in and out of the fanny pack). We got a fanny pack for her drain, but she can't take the drain off her chair and put it in there and this aide is suppose to help her with all that stuff. I feel so comfortable with Quinn being at school! she's going to have a great time! I just hope I can keep her from stinking. Her formula smells bad. I don't know how to contain the stench. I'm going to have to rig something up for her within the next two months to try and conceal it because I don't want her being made fun of.
That bile just accumulated within a few hours.
Tuesday, August 16, 2011
Back In
Yep back in the hospital. So, a lot has been going on since I last posted. Over the past month, Q has just kinda fallen into a very, very slow downhill spiral. First of all, we know Quinn has issues with her gut. they are typically on and off. She can have two very bad days motility-wise, in which her stomach is blowing up like a balloon and she's just off, and then go back to her baseline. We can sometimes have weeks of no bad days, but this past month, she had way more bad days than good days and it slowly caught up with her into what we are currently dealing with. She also is no longer fully potty trained. She's having so many accidents her in pants that there's just no point to putting her in panties anymore :( Sad thing is that she knows she had an accident and she will tell me and get all embarrassed, but she just doesn't seem to be able to control it anymore. ugh! it's frustrating because she's 5.5 years old.
So, last week, I started to notice that Q's tummy wasn't really going down. I took her to the pediatrician who also said that yes, she is distended, but she's acting totally fine. so we did an Xray and the next day the pedi called me to tell me that she needed to be seen at the hospital. Her liver was enlarged and her stomach was greatly distended with gas and fluid. So, since her doctors all think that she should be see at CHLA, where her mito doctor is, we thought that it would be a good idea to just go down there since I kinda knew where this was headed. It was a tough decision because she was still acting very normally and she was not spilling any ketones or anything like that. So, we drove all the way down there, which is about 2.5-3 hours away! we get in there and the docs thought she looked well. Mind you, i KNEW she looked well, but I also knew where she was headed. I gave them her histoyr and told them her pattern in this and that I thought it was a good idea to nip it in the butt before it got worse than what it is right now. The took another Xray, which also showed the same distension as the one from the day before, but they took all her blood and all her bloodwork was normal. Because her blood work was normal, they felt that I was doing fine with her at home and that there was nothing they could do for her that i couldn't or wasn't already at home and they sent us home, with a diagnosis of pseudoobstruction!!! I was shocked. Loma Linda would have admitted right away given her history and two consecutive Xrays indicating a pseudo obstruction. She was smiling and her labs were normal which is why they sent us home. I don't blame them, but I really thought that hospital was more familiar with how Mito kids were and that I shouldn't have to wait till it's an emergency to bring her in. Well, apparently i was wrong and totally wasted my time going out there. Not only that, but I KNEW where this was headed! I KNEW my child was entering the "danger zone" and just had a feeling that this wasn't the end of this fiasco.
So, I did my best to care for her at home over the weekend, checked her ketones, she was still doing remarkably well considering taht her stomach just kept blowing up like a balloon. She wasn't in very much pain at all, I could still hear bowel sounds. The problem was that I had her at 6 caps of mirilax a day, senna and generlac and had given her an enema and she was still getting bigger and bigger and she was not really pooping anything that I would consider an actual bowel movement. She had been excessively hungry and excessively thirsty. Her blood sugar for some reaosn was high. and she hadn't peed all of yesterday.
So, yesterday, I decided to take her to the local ER for another Xray and to tget their opinion. Due to how well she was doing, i was certain her labs weren't going to be abnormal. But when the ytook her Xray they were like... she really needs to go into the hospital. Her Xray, which was alreayd pretty bad had gotten significantly worse. They diagnosed her with a small bowel obstruction, which im certain is pseudo. She was also hypoglycemic and her heart rate was in the 140s.
So, we are decompressing her entire body. Draining her J, her G and her booty. I'll keep you guys updated. I think this will be a short stay. She is acting fine so I'm assuming we won't have to worry about any shennanigans she might want to pull while we are here.
So, last week, I started to notice that Q's tummy wasn't really going down. I took her to the pediatrician who also said that yes, she is distended, but she's acting totally fine. so we did an Xray and the next day the pedi called me to tell me that she needed to be seen at the hospital. Her liver was enlarged and her stomach was greatly distended with gas and fluid. So, since her doctors all think that she should be see at CHLA, where her mito doctor is, we thought that it would be a good idea to just go down there since I kinda knew where this was headed. It was a tough decision because she was still acting very normally and she was not spilling any ketones or anything like that. So, we drove all the way down there, which is about 2.5-3 hours away! we get in there and the docs thought she looked well. Mind you, i KNEW she looked well, but I also knew where she was headed. I gave them her histoyr and told them her pattern in this and that I thought it was a good idea to nip it in the butt before it got worse than what it is right now. The took another Xray, which also showed the same distension as the one from the day before, but they took all her blood and all her bloodwork was normal. Because her blood work was normal, they felt that I was doing fine with her at home and that there was nothing they could do for her that i couldn't or wasn't already at home and they sent us home, with a diagnosis of pseudoobstruction!!! I was shocked. Loma Linda would have admitted right away given her history and two consecutive Xrays indicating a pseudo obstruction. She was smiling and her labs were normal which is why they sent us home. I don't blame them, but I really thought that hospital was more familiar with how Mito kids were and that I shouldn't have to wait till it's an emergency to bring her in. Well, apparently i was wrong and totally wasted my time going out there. Not only that, but I KNEW where this was headed! I KNEW my child was entering the "danger zone" and just had a feeling that this wasn't the end of this fiasco.
So, we are decompressing her entire body. Draining her J, her G and her booty. I'll keep you guys updated. I think this will be a short stay. She is acting fine so I'm assuming we won't have to worry about any shennanigans she might want to pull while we are here.
Thursday, August 4, 2011
What a great summer so far! Overall, Quinn is doing quite well. She does still have her ups and downs. At times I feel she is borderline in need of the hospital, but we are working things out here at home, which is all I ever wanted. Those crazy doctors who told me that without her IV line, she would end up back in the hospital within a month. BUAHAHAHA!!! Ideally, I'm sure she'd do better with a line, but not for the consequences at this point in time.
We went to Sea World this summer! and Quinn had a blast! She's been talking about it so much lately and she wants to go back there soon! Maybe next summer, kiddo. I am so happy we were able to take her. Quinn also lost another tooth this summer, and again, we couldn't find it! So she had to write another note to the Tooth Fairy about how she lost her tooth... literally.
My little dog, Jezi got attacked by a coyote and survived! It was sooo scary! My dog Jezi is actually Quinn's dog Jezi. Those two are like two peas in a pod. She loves that little dog. Jezi is a chihuahua mix with a wiener dog (chihuweenie). So she's little. I was at my mom's house taking care of my sister's children and I had my dogs over there in the backyard. sometime right after the sun went down, my older dog, Jenna started barking hysterically. I let her bark for about 5 minutes (shame on me). I guess i just thought she was being over-dramatic and barking at someone walking by maybe. Well, she wouldn't stop barking and she was barking like a crazy dog so i went out there to see what was going on. She just kept barking and running from me to the middle of the yard and back again. I could tell she was telling me something. Then all of a sudden from the blackness of the night, Jezi comes shooting right past me and into the house all super fast. I was like.... ummm WHAT JUST HAPPENED? So I picked her up and she was grunting and breathing all weird and she was in shock. I examined her and she had drool ALL over her back and two puncture wounds on the sides of her and scratches all over her little legs. The only logical conclusion that we could come up with was that the coyote actually jumped the fence, picked up Jezi and tried carrying her back over the fence, but actually dropped her and she was able to escape. My poor little girl. She ended up on antibiotics for her wounds and had a broken rib. But that was it. She was lucky! Now we call her a warrior and she thinks she is a badass because she escaped the Jaws of a coyote.
I have been looking into buying a house. What I truly want is a place for Quinn to call home. I grew up in the Military and so I moved around a lot. I have no roots. I have no ties to any particular place in the Country. I have no strong relationships with much of anyone. I get jealous of friends and family who can drive around an area and say, "I grew up here." "I remember when this used to be." and etc... I want that for Quinn. I want her to have a home. I want her to develop life-long friendships. I want her to be able to reminisce about the past with people who were actually in her past to share that time with. I just don't have that and I want that for Quinn. There are a lot of things keeping me living where I am right now. I am not sure of programs like the one that Quinn and I are on in any other part of the Country. This program allows me to stay home and care for Quinn while being able to live a life of our own. If it weren't for the program we are on, Quinn would have to have a nurse and I would be working a lot to make ends meet. I wouldn't be able to be there for her if she goes inpatient as often as I am. I think she would be a lot sicker than she currently is as well. So, I choose not to move out of state. I also would like to move closer to the hospitals so that way I can just go home at night instead of having to worry about a hotel or sleeping on an uncomfortable bed. so that way I don't have to drive 2+ hours to get clothes and stuff. The problem with moving closer to hospitals is that the cost of living is extremely high. I couldn't afford it. I've checked into it and it's just too much. The place that I am currently living is the lowest cost of living here in California. I thought about moving further North, because I would really like to have grass and maybe a pond or lake nearby. right now we live in the desert, but I don't know of any good hospitals up in Northern California that could take good care of Quinn. Financially, best bet is to stay here. I think i could be happy here, but this is definitely not the predicament I ever expected to be in at this point in my life. I wanted to be well on my way to a nice career. Making at least a decent living and have a healthy child. My dreams seem so far away from me. I'm sure I will make it all work somehow.
Please pray for another mito warrior, Brent. He has had an incredibly difficult time and lately is really struggling in the hospital with a possible HLH flare up. Hang in there guys and keep fighting, Brent.
photo uploader is being really stupid for some reason.
We went to Sea World this summer! and Quinn had a blast! She's been talking about it so much lately and she wants to go back there soon! Maybe next summer, kiddo. I am so happy we were able to take her. Quinn also lost another tooth this summer, and again, we couldn't find it! So she had to write another note to the Tooth Fairy about how she lost her tooth... literally.
My little dog, Jezi got attacked by a coyote and survived! It was sooo scary! My dog Jezi is actually Quinn's dog Jezi. Those two are like two peas in a pod. She loves that little dog. Jezi is a chihuahua mix with a wiener dog (chihuweenie). So she's little. I was at my mom's house taking care of my sister's children and I had my dogs over there in the backyard. sometime right after the sun went down, my older dog, Jenna started barking hysterically. I let her bark for about 5 minutes (shame on me). I guess i just thought she was being over-dramatic and barking at someone walking by maybe. Well, she wouldn't stop barking and she was barking like a crazy dog so i went out there to see what was going on. She just kept barking and running from me to the middle of the yard and back again. I could tell she was telling me something. Then all of a sudden from the blackness of the night, Jezi comes shooting right past me and into the house all super fast. I was like.... ummm WHAT JUST HAPPENED? So I picked her up and she was grunting and breathing all weird and she was in shock. I examined her and she had drool ALL over her back and two puncture wounds on the sides of her and scratches all over her little legs. The only logical conclusion that we could come up with was that the coyote actually jumped the fence, picked up Jezi and tried carrying her back over the fence, but actually dropped her and she was able to escape. My poor little girl. She ended up on antibiotics for her wounds and had a broken rib. But that was it. She was lucky! Now we call her a warrior and she thinks she is a badass because she escaped the Jaws of a coyote.
I have been looking into buying a house. What I truly want is a place for Quinn to call home. I grew up in the Military and so I moved around a lot. I have no roots. I have no ties to any particular place in the Country. I have no strong relationships with much of anyone. I get jealous of friends and family who can drive around an area and say, "I grew up here." "I remember when this used to be." and etc... I want that for Quinn. I want her to have a home. I want her to develop life-long friendships. I want her to be able to reminisce about the past with people who were actually in her past to share that time with. I just don't have that and I want that for Quinn. There are a lot of things keeping me living where I am right now. I am not sure of programs like the one that Quinn and I are on in any other part of the Country. This program allows me to stay home and care for Quinn while being able to live a life of our own. If it weren't for the program we are on, Quinn would have to have a nurse and I would be working a lot to make ends meet. I wouldn't be able to be there for her if she goes inpatient as often as I am. I think she would be a lot sicker than she currently is as well. So, I choose not to move out of state. I also would like to move closer to the hospitals so that way I can just go home at night instead of having to worry about a hotel or sleeping on an uncomfortable bed. so that way I don't have to drive 2+ hours to get clothes and stuff. The problem with moving closer to hospitals is that the cost of living is extremely high. I couldn't afford it. I've checked into it and it's just too much. The place that I am currently living is the lowest cost of living here in California. I thought about moving further North, because I would really like to have grass and maybe a pond or lake nearby. right now we live in the desert, but I don't know of any good hospitals up in Northern California that could take good care of Quinn. Financially, best bet is to stay here. I think i could be happy here, but this is definitely not the predicament I ever expected to be in at this point in my life. I wanted to be well on my way to a nice career. Making at least a decent living and have a healthy child. My dreams seem so far away from me. I'm sure I will make it all work somehow.
Please pray for another mito warrior, Brent. He has had an incredibly difficult time and lately is really struggling in the hospital with a possible HLH flare up. Hang in there guys and keep fighting, Brent.
photo uploader is being really stupid for some reason.
Thursday, July 7, 2011
It's been a long time
In many ways, Quinn is doing very well. She got that newer longer J tube put in and we saw an IMMEDIATE turn around in her pain and discomfort. I am so very happy with that. If she had continued on for much longer in the amount of pain she was in, I'm not sure if I would have continued to let her suffer through feeds, so thank God for the small things! We are so grateful for her wonderful GI doc who, despite the protest from the head of the GI dept., went ahead and placed the new tube. I am forever grateful.
Quinn hasn't really gained any weight, but she hasn't really lost any either. We are still bouncing around at 30-35ml/hr. any more than that seems to cause pain and bloating. I know her motility is incredibly slow, but I have also learned to accept that this is just our normal. And eventually, there will probably be a new normal. Quinn constantly has all sorts of different colors coming out of her tube. If she isn't producing dark green bile, she's usually producing brown or reversing her milky vivonex formula into her stomach. In the past, I would have probably brought her in on numerous occasions due to the symptoms associated with the dark green and reverse motility, however, I know what the alternative is, and TPN is simply not an option for us right now. Plus, I don't want to be hounded over and over again about her need for a permanent line. I'm just not prepared for it and I don't know if I could say no under pressure. So far, both Quinn and I are coping well with our current normal. Since the new tube, her ketones have been nil, her blood sugars are much more stable, she seems slightly more alert and interactive and she just seems overall a little better.
Since I'm able to calm down a little on her GI issues, i can't help but focus on her issues with her right side. Yet again, we continue to see problems with her right sided weakness. I think that because she has been moving around more lately, it appears to be more prominent than it has in months. I've gotten very tired of seeing her fall multiple times, all due to her right leg simply giving out or just general weakness and it being very sluggish. She even gets frustrated. We've decided to entertain the idea of putting the AFO back on her right leg in hopes to both conserve energy and decrease her falls. She falls hard too and sometimes, she can't even break her fall with her hands. sometimes she just splats right on the ground from a standing position... no given warning. So orders have been put through for an evaluation and insurance approval. I am hoping to have the brace by the time school starts.
It's a short update. A lot has been going on, but I'll spare everyone the boring details and just post a ton of pictures! enjoy :)
In June, I met up with a couple of Southern California Mito Mamas and their children. Well, we kinda already knew them... Cheryl i've been friends with for almost 2 years and Kris i met at CHLA when we were there for our mito appointment. It was wonderful to see all our mito kids together. I am really looking forward to another meet up. in the future.
Quinn hasn't really gained any weight, but she hasn't really lost any either. We are still bouncing around at 30-35ml/hr. any more than that seems to cause pain and bloating. I know her motility is incredibly slow, but I have also learned to accept that this is just our normal. And eventually, there will probably be a new normal. Quinn constantly has all sorts of different colors coming out of her tube. If she isn't producing dark green bile, she's usually producing brown or reversing her milky vivonex formula into her stomach. In the past, I would have probably brought her in on numerous occasions due to the symptoms associated with the dark green and reverse motility, however, I know what the alternative is, and TPN is simply not an option for us right now. Plus, I don't want to be hounded over and over again about her need for a permanent line. I'm just not prepared for it and I don't know if I could say no under pressure. So far, both Quinn and I are coping well with our current normal. Since the new tube, her ketones have been nil, her blood sugars are much more stable, she seems slightly more alert and interactive and she just seems overall a little better.
Since I'm able to calm down a little on her GI issues, i can't help but focus on her issues with her right side. Yet again, we continue to see problems with her right sided weakness. I think that because she has been moving around more lately, it appears to be more prominent than it has in months. I've gotten very tired of seeing her fall multiple times, all due to her right leg simply giving out or just general weakness and it being very sluggish. She even gets frustrated. We've decided to entertain the idea of putting the AFO back on her right leg in hopes to both conserve energy and decrease her falls. She falls hard too and sometimes, she can't even break her fall with her hands. sometimes she just splats right on the ground from a standing position... no given warning. So orders have been put through for an evaluation and insurance approval. I am hoping to have the brace by the time school starts.
It's a short update. A lot has been going on, but I'll spare everyone the boring details and just post a ton of pictures! enjoy :)
In June, I met up with a couple of Southern California Mito Mamas and their children. Well, we kinda already knew them... Cheryl i've been friends with for almost 2 years and Kris i met at CHLA when we were there for our mito appointment. It was wonderful to see all our mito kids together. I am really looking forward to another meet up. in the future.
Oh yeah, Quinn also lost her first tooth!
This is from her somehow falling into the corner of the counter.... thankfully she missed her eye.
This is 4th of July! so the picture right underneath, i just thought it was funny and had to post it. I was trying to take a pic of us three and it didn't work out well, but i got this funny face of Q.
I also enrolled Quinn in swimming lessons. I can tell it's really hard for her, but she is not a quitter. She's amazing.
And the one below is the most recent picture of my sweet girl.
After literally giving up and thinking that she would never learn it, Quinn surprised me and my sister one day but all of a sudden swinging all by herself! I was so proud of her! this was taken yesterday!
Monday, May 23, 2011
New Tube On Thursday
Hey guys. First off, sorry I haven't been on. Been going through kind of a funk lately and I haven't felt much like blogging. Not to mention that I lost my USB to my phone so i can't really put pictures on the blog and I know how EVERYONE just LOVES to see pictures! And i love showing off my sweet girl too. She's been doing pretty well without her PICC line. We have quite a bit of new interventions, but they are all going quite well. She's on Vivonex 30cal/oz. I tried decreasing the cals to see if i can increase the rate, but every time i increase the rate past 30ml/hr, she gets into even more pain and areas of her intestines start to distend and it's just very obvious that she cannot tolerate a rate past that for more than a 12 hours. I am also putting pedialyte into her feeds to keep her electrolytes up as 30ml/hr is just a very small amount to try and hydrate her. It's working. Still, even at a rate of 30, she tends to accumulate feeds in a portion of her intestines just past the J tube. I believe feeds are accumulating in the Y portion of the surgery and this causes an extreme amount of pain for her. And so on Thursday, she is going to go back in and have a new longer J tube put in in an attempt to bypass this area of the intestines that is obviously troublesome. They are also going to be doing a dye study to see if there's any excess scar tissue or any other reason that the feeds would be accumulating in that area. I am sincerely hoping that it's just bad motility in that part as otherwise, she would likely need additional surgery and that just doesn't go over well for her.
Lately, we've been dealing with lots of tummy pain and thick thick dark green bile. She had a fever of 102 over thew eekend, but today she's back down to 100.8, i'm hoping the fever is gone by tomorrow and I think it will be because she is acting herself again. Aside from the terrible tummy, things are ok. It breaks my heart to see her deal with the pain though as she is in pain far too often from feedings. Remember, this and the bulging and the slow motility was very much the reason why the docs wanted her home on TPN. We will avoid this for as long as possible. She is holding on to a very healthy weight of 40lb. and aside from the pain and periods of very slow motility, she is doing well on this. We are learning to cope with a new normal and I have had to learn to try and deal with it. Quinn too. This very thick dark green bile drainage along with the severe pain is an indication that the motility has slowed significantly latelyl, which is likely due to the fever or the slow motility caused the fever, who knows honestly, but normally, i'd have taken her in at this point. However because we KNOW she has this issue and we KNOW the outcome, I'm keeping her home so we can deal with it here. We have urine dipsticks and we've been testing her ktones and specific gravity to ensure she's adequately hydrated, she's on round the clock pain killers and when i need to, i stop the feeds and run gatorade with protein and sugar and pedialyte added in and this is what's keeping her home and thankfully, it's working :) So please hope that the new tube placement goes well and that they don't find anything that might need "fixing".
Here's a video of the bulges.
Lately, we've been dealing with lots of tummy pain and thick thick dark green bile. She had a fever of 102 over thew eekend, but today she's back down to 100.8, i'm hoping the fever is gone by tomorrow and I think it will be because she is acting herself again. Aside from the terrible tummy, things are ok. It breaks my heart to see her deal with the pain though as she is in pain far too often from feedings. Remember, this and the bulging and the slow motility was very much the reason why the docs wanted her home on TPN. We will avoid this for as long as possible. She is holding on to a very healthy weight of 40lb. and aside from the pain and periods of very slow motility, she is doing well on this. We are learning to cope with a new normal and I have had to learn to try and deal with it. Quinn too. This very thick dark green bile drainage along with the severe pain is an indication that the motility has slowed significantly latelyl, which is likely due to the fever or the slow motility caused the fever, who knows honestly, but normally, i'd have taken her in at this point. However because we KNOW she has this issue and we KNOW the outcome, I'm keeping her home so we can deal with it here. We have urine dipsticks and we've been testing her ktones and specific gravity to ensure she's adequately hydrated, she's on round the clock pain killers and when i need to, i stop the feeds and run gatorade with protein and sugar and pedialyte added in and this is what's keeping her home and thankfully, it's working :) So please hope that the new tube placement goes well and that they don't find anything that might need "fixing".
Here's a video of the bulges.
Wednesday, May 4, 2011
Tuesday, May 3, 2011
We've Been Home
Sorry I haven't updated, but normally, when I don't update, you can assume everything turned out well. And it did. We ended up pulling the line last Saturday and all cultures were negative by Tuesday morning and so we were able to go home. Children with mito are much more at risk for line infections than children without mito and so we opted (against the advise of the GI doc, who made it very clear) not to place another central line. We came home last Tuesday (a week ago). I am so grateful to be home! so is Quinn.
She is on a new medication called Amytriptaline, which was causing some psychotic side effects. the med is used for pain control, but she was suffering from just about every symptom on the side-effects list. We were told that most side effects disappear after one month of usage and she's been on it for one month and we are just now starting to see some of the psychotic symptoms disappear, thankfully! I don't think she's on a very high dose though and she is still in pain, so hopefully when we increase the dose, she won't have the same side effects.
she had a really good week. we have her on the Vivonex formula and we came home at a rate of 30ml/hr and adding 250cc of pedialyte a day into her feed bag to help account for the fluid loss. We have been trying to increase her rate to a rate that can both nourish and hydrate her and so far, we have her at a rate of 37ml/hr during the day and staying at 30ml/hr at night. Unfortunately, yesterday was a very rough day for the tummy and she wash aving a lot of pain and bloating and had blood sugars in the 60s. i had to put her on straight pedialyte with sugar. I have to run this a bit faster to try and avoid the hypoglycemia so i was running it at 40cc/hr and at night, she started to get really distended. Her motility is being really buggy. But i think ti's jsut from all the excitement of being back at home. Plus, we had the twin's birthday party this weekend and she was really active and running around and jumping int he bounce house. And then yesterday was her first day back at school. so she's been pretty active. Just stinks that so much activity is healthy for you, but makes her tummy act really mean. At least it's still moving and I can giveh er a medication to help take the pain away for a little bit.
I have also come to terms with the fact that no matter what I do and how hard I try to avoid it, Quinn is ALWAYS going to have her good days, weeks, and months and she's ALWAYS going to have bad days, weeks and months. her GI motility is just a piece of work and I have learned to accept that she will have a bigger belly than other children, she will have more pain and require more pain meds, she eventually be smaller than other children. I learned to screw the calories and give her a better quality of life. Yes, calories are important, but sometimes, when the pain is too bad and the tummy is too big, I just need to cut off her feeds and give her a break and run pedialyte with sugar instead ot keep her sugars up.I never wanted to do this before because I never wanted her to lose the calories. Unfortunately, she's tolerating such a small rate of formula, I've always felt that pushing for the calories was really important, when in reality, she just needs a boost of hydration and sugar and time to let her belly start working again. We need to avoid TPN as I have been told many, many times before and see in far too much, the side effect of TPN is death. the line infections that TPN causes are so serious and very life-threatening. Plus, it destroys the liver. The ONLY way that I will EVER agree to send Quinn home on any kind of TPN is if there's nothing moving in her GI system and she is skin and bones and totally malnourished. As long as she has some sort of motility. Just as with her stomach. i know her stomach motility sucks so bad. It's terrible! But my kid, she loves to eat by mouth. Right now, her stomach can still move stuff into her small intestine. Yes, it is a very long process and what she takes in orally is a fraction of what a child her age should be taking in orally to sustain life, but since the stomach still works and I can at least drain some of it if it's not moving fast enough, as long as her stomach will allow it, she will still eat by mouth. it's a small amount and mostly in pureed form, but it's something. Same with ehr J tube. Quinn's small intestines really do suck. you can actually see lumps throughout her small intestine when her motility is being slow of where her motility is more sluggish. It's like a traffic jam in certain areas. It's the strangest thing to actually see her tummy all lumpy, but hey... as long as stuff is still moving, yes slow, but as long as it's still moving, she's going to remain fed through the J tube. it's going to take a lot of work, but I HAVE to do this, for Quinn. TPN is not what I want for her. It's something I will avoid for as long as possible.
Also, while in the hospital Quinn was evaluated for her swallow and she is back to having a terrible tongue thrust and stage delay. So we were referred for speech therapy again for feeding. She's having a hard time swallowing, but her swallow is safe. It's just very difficult for her to get her food down into her stomach. Like she tries very hard looks like she always gets stuff stuck in her throat when eating and she's gagging on it and stuff. Anyway, so that's something new to add to her list of things to do. She's had feeding therapy before, for very much the same reasons when she was a baby, however she hasn't needed it since she was 2.5 years old. It helps. she always pockets food, but she's ALWAYS done that... never something we have been able to break. But also, she pushes forks and spoons under her tongue instead of cupping her tongue like a bowl, I dont' know why she can't do this. She also can't stick her tongue out to lick her upper lip. It's weird. But we will figure out what exactly is going on.
Anyway, here are some pictures.
Ok, so I lost my USB cord to my phone and I had to go through photobucket, but photobucket is no longer easy to work with and it's slow so here's clickable thumbnails. sorry it has to be like that.
How Quinn was when we first got in, not how she was in ER, because somehow, she was fine in the ER lol! She was feeling really icky and tummy was so painful.
Look at this picture, you would never know that there was a screaming 5 year old in the bed next to her, the florescent lights all on and she had been and was being moved and poked and prodded by nursing students and nurses. She slept through it all.
This is how her stomach was looking after about 10 hours of 10ml/hr of 1/2 strength vivonex. Her tummy just was not working very well. It was firm and lumpy in the areas that were sluggish.
This is what her tummy is suppose to look like! This was a good tummy day and we were almost at full strength, i think she was on 20ml/hr or something. She was having a good day.
And this is what her tummy looked like when that nurse fed her that tray of food and tried telling me that she was not at all distended. I snapped a picture right after she walked out of the room. this was when i had a break down moment and was literally a sobbing mess trying to tell this doctor what had just happened.
This is what her hand was looking like when she was getting vancomyacin in her peripheral iv. It actually got worse than this and had to be cut off and ran continuously over the course of 2 hours.
And here are some pictures of our bounce house fun. I just love the look of complete happiness in her face.
She is on a new medication called Amytriptaline, which was causing some psychotic side effects. the med is used for pain control, but she was suffering from just about every symptom on the side-effects list. We were told that most side effects disappear after one month of usage and she's been on it for one month and we are just now starting to see some of the psychotic symptoms disappear, thankfully! I don't think she's on a very high dose though and she is still in pain, so hopefully when we increase the dose, she won't have the same side effects.
she had a really good week. we have her on the Vivonex formula and we came home at a rate of 30ml/hr and adding 250cc of pedialyte a day into her feed bag to help account for the fluid loss. We have been trying to increase her rate to a rate that can both nourish and hydrate her and so far, we have her at a rate of 37ml/hr during the day and staying at 30ml/hr at night. Unfortunately, yesterday was a very rough day for the tummy and she wash aving a lot of pain and bloating and had blood sugars in the 60s. i had to put her on straight pedialyte with sugar. I have to run this a bit faster to try and avoid the hypoglycemia so i was running it at 40cc/hr and at night, she started to get really distended. Her motility is being really buggy. But i think ti's jsut from all the excitement of being back at home. Plus, we had the twin's birthday party this weekend and she was really active and running around and jumping int he bounce house. And then yesterday was her first day back at school. so she's been pretty active. Just stinks that so much activity is healthy for you, but makes her tummy act really mean. At least it's still moving and I can giveh er a medication to help take the pain away for a little bit.
I have also come to terms with the fact that no matter what I do and how hard I try to avoid it, Quinn is ALWAYS going to have her good days, weeks, and months and she's ALWAYS going to have bad days, weeks and months. her GI motility is just a piece of work and I have learned to accept that she will have a bigger belly than other children, she will have more pain and require more pain meds, she eventually be smaller than other children. I learned to screw the calories and give her a better quality of life. Yes, calories are important, but sometimes, when the pain is too bad and the tummy is too big, I just need to cut off her feeds and give her a break and run pedialyte with sugar instead ot keep her sugars up.I never wanted to do this before because I never wanted her to lose the calories. Unfortunately, she's tolerating such a small rate of formula, I've always felt that pushing for the calories was really important, when in reality, she just needs a boost of hydration and sugar and time to let her belly start working again. We need to avoid TPN as I have been told many, many times before and see in far too much, the side effect of TPN is death. the line infections that TPN causes are so serious and very life-threatening. Plus, it destroys the liver. The ONLY way that I will EVER agree to send Quinn home on any kind of TPN is if there's nothing moving in her GI system and she is skin and bones and totally malnourished. As long as she has some sort of motility. Just as with her stomach. i know her stomach motility sucks so bad. It's terrible! But my kid, she loves to eat by mouth. Right now, her stomach can still move stuff into her small intestine. Yes, it is a very long process and what she takes in orally is a fraction of what a child her age should be taking in orally to sustain life, but since the stomach still works and I can at least drain some of it if it's not moving fast enough, as long as her stomach will allow it, she will still eat by mouth. it's a small amount and mostly in pureed form, but it's something. Same with ehr J tube. Quinn's small intestines really do suck. you can actually see lumps throughout her small intestine when her motility is being slow of where her motility is more sluggish. It's like a traffic jam in certain areas. It's the strangest thing to actually see her tummy all lumpy, but hey... as long as stuff is still moving, yes slow, but as long as it's still moving, she's going to remain fed through the J tube. it's going to take a lot of work, but I HAVE to do this, for Quinn. TPN is not what I want for her. It's something I will avoid for as long as possible.
Also, while in the hospital Quinn was evaluated for her swallow and she is back to having a terrible tongue thrust and stage delay. So we were referred for speech therapy again for feeding. She's having a hard time swallowing, but her swallow is safe. It's just very difficult for her to get her food down into her stomach. Like she tries very hard looks like she always gets stuff stuck in her throat when eating and she's gagging on it and stuff. Anyway, so that's something new to add to her list of things to do. She's had feeding therapy before, for very much the same reasons when she was a baby, however she hasn't needed it since she was 2.5 years old. It helps. she always pockets food, but she's ALWAYS done that... never something we have been able to break. But also, she pushes forks and spoons under her tongue instead of cupping her tongue like a bowl, I dont' know why she can't do this. She also can't stick her tongue out to lick her upper lip. It's weird. But we will figure out what exactly is going on.
Anyway, here are some pictures.
Ok, so I lost my USB cord to my phone and I had to go through photobucket, but photobucket is no longer easy to work with and it's slow so here's clickable thumbnails. sorry it has to be like that.
How Quinn was when we first got in, not how she was in ER, because somehow, she was fine in the ER lol! She was feeling really icky and tummy was so painful.
Look at this picture, you would never know that there was a screaming 5 year old in the bed next to her, the florescent lights all on and she had been and was being moved and poked and prodded by nursing students and nurses. She slept through it all.
This is how her stomach was looking after about 10 hours of 10ml/hr of 1/2 strength vivonex. Her tummy just was not working very well. It was firm and lumpy in the areas that were sluggish.
This is what her tummy is suppose to look like! This was a good tummy day and we were almost at full strength, i think she was on 20ml/hr or something. She was having a good day.
And this is what her tummy looked like when that nurse fed her that tray of food and tried telling me that she was not at all distended. I snapped a picture right after she walked out of the room. this was when i had a break down moment and was literally a sobbing mess trying to tell this doctor what had just happened.
This is what her hand was looking like when she was getting vancomyacin in her peripheral iv. It actually got worse than this and had to be cut off and ran continuously over the course of 2 hours.
And here are some pictures of our bounce house fun. I just love the look of complete happiness in her face.
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