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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