I have been SO busy with the holidays! It's just been nuts, but here's what I have accomplished in the past week or so. I have sewn curtains, made christmas cards (scrapbooking), gone to a birthday party, Q had an EMG, hung out with a fellow Mito Momma and her two kiddos, and bitched, moaned, complained and bitched some more at Mobility Solutions (where we hope to get Q's medical Stroller), pulmonary office and Quinn's oxygen company, as well as Social Security. Wouldn't you believe it... we just have the worst luck. First of all, it's been a few months since we started the whole process with trying to get a medical stroller for Quinn. After about hmmmm 5 phone calls spanned over 3ish months, I finally asked to talk to someone in corporate and they finally sent me to someone's voice mail who called me back and claimed that they never communicated with him. Apparently, he never knew that I had been trying to call. GGGRRRRR!!! So the company they sent her measurements to lost the paper work and he had to resend it, a couple days later, the claimed they didnt' have a script for the medical stroller (when i did indeed give it to them) and THEN, I had to re-fax it. It was just a long process of phone calls, leaving messages, threatening to call every hour till someone finally picked up and etc... HOPEFULLY! that's the end of that crap. I was told that IF everything goes right and insurance approves her stroller, she will get it by the end of Janurary, beginning of February. However, we know how that goes and I'm prepared to fight a battle with this as well.

On to the oxygen thing... wouldn't you know it!? We are still battling this... STILL!!! After the pulse ox study indicating that she needed oxygen and doctor's notes/prescriptions, talking pleading convicing... there's just nothing I can do on my part except to see what the process is to start a lawsuit. It took an entire week of talking between pulmonary and the oxygen company to try and get the new request worked out and I was just told today that they finally sent the prescriptions and records of necessity in to the insurance. If the insurance denies this... AGAIN... I WILL be doing SOMETHING about this. I've got a patient relations advocate helping me with this. I've left multiple messages this week with SSI (because they are the ones who deal with her Medi-Cal and don't ask me HOW long it took me to figure that out and for someone to finally give me that information). Not to mention the Pulse ox issue. I don't understand HOW this is such an issue, honestly.

Q is running dangerously low on oxygen, we are out of cannulas and using baby ones to try and make those stretch. She is left with just half an E tank. And her concentrator needs to be serviced and/or replaced. We are grateful as family has offered to pay out of pocket for her medical supplies for right now. God knows i just can't afford it all right now. We might have to take that route however I hate to resort to that. It's quite apparent that Quinn needs her oxygen. She becomes pale, lethargic, dark circles under her eyes, her tummy starts giving her problems. Eventually, it just wears her down completely where she's just a ball of a mess. I just wish getting what we need for her, when she obviously needs it was not so difficult.

As far as the tube thing is going, we have thankfully started seeing some improvement. And this is all around a great thing! I was sincerely regretting the decision to put her through that J tube surgery. It was rough... very very rough and I hated seeing my baby suffer. but, we seem to have reached a nice steady slope uphill into bliss. There are a few issues, one of those being a low level dehydration, however we are still working out the kinks in her new schedule to help push more fluids into her. she is also not really gaining weight. She actually still looks quite skinny. You can still see every single bone in her body, ribs, pelvic bone, thighs... when she takes her clothes off, she just looks sickly, but I am crossing my fingers that this is just a slow process. She was very sick and she has bounced back very quickly, there's bound to be a few things that are going to take a bit longer to work themselves out.

The ferral bags seemed to have really helped a lot with her distension! We keep her hooked up to that pretty much all day. she continuously vents. We do clamp her for about an hour or two when she takes in food and fluids by mouth, but we are so grateful that she's not in so much pain. Now, I must admit though, today she was slightly more distended and her tummy did hurt her today and yesterday, and she was putting out quite a bit of food through the ferral, however, I can't expect anything more right now. Even with this small bump, it's still 10 times better than what we were dealing with before all this new stuff came along. Besides, she is prone to having bad motility days so mostly good, a little bad... what more could I ask for!? It's a great feeling to not be overly worried about her stomach distension.

The coolest thing about how she is feeling is hearing it from the family! When you are with a child like Quinn day in and day out, it is very hard to pick up on the big changes. All we see is the subtle changes. Mix all the good with some of the bad and you are left with a mom saying over all things seem to be looking pretty good. But then to hear family talk about how she was before the surgery and how she is looking now! It just seems like a small miracle. My auntie was telling me about how she was just a few days before she went into surgery, how dark her circles were (yes while on oxygen), how lethargic she seemed and clumsy. and now, Q is so talkative and outgoing and her eyes are so bright and happy and she is just soaking in all the good. It's wonderful! It makes me feel better about the decision we made for her.

I must say, it is a bit bitter-sweet to have a child that feels well enough to act her age. Q is almost five! she turns five on the 17th of January!!! At almost-five, if it's not what SHE wants and if it's not on HER agenda, well, then, that person who is crossing her is gonna get quite an earful, and what i mean by earful I mean loud, stomping, kicking, screaming, arm-crossing earful. And unfortunately, that person crossing her is usually her mommy. i'm doing my best at trying to find a new way to deal with this and my next step is grounding!!! I think she can grasp the concept of that. Taking toys away is just not cutting it.

 The Above is my Baby Quinn :)

Things haven't exactly been smooth sailing since coming home. At times, I'm on the brink of taking her in to the ER, but other times, I think she is heading in the right direction. All in all, things appear to be going ok. I hear this recovery is a rough one and in my opinion, after all the drama that happened after her surgery with the PICU, she was discharged a little too quickly. She's still not quite as stable on the feet as she was before. Last week was pretty rough as she was still in a significant amount of pain and we were unable to keep her at a rate of 45cc/hr. We have had to decrease her rate to 30 and we end up removing her altogether during extended periods of pain and bloating. We have yet to see any true improvement in her pain and bloating since the surgery, which is a little depressing, however we also are aware that she is still in recovery so it might be a little while longer.

We were also able to order ferral bags for her. Thsi way we can vent her G continuously and feed her through the J. They haven't come in yet so i'm not sure what our system will be like, but i'm sure we will find one that works.

Last night, she leaked her J feed somehow. I have NO idea how because everything seemed to be very intact and even the tape that we use to keep her med port on her extension shut was pretty clean and dry so I didn't think it could have been from that. Not to mention that the puddle she was laying in was almost dry in the morning so it just kinda happened in the middle of the night and kinda stopped by itself. The extension looks pretty clean... even where the Christmas tree is (she usually likes to pop those out too). I thought maybe she just wasn't moving her food through very well, but when she woke up, her belly was really skinny and not at all bloated, so, in all honesty, I have NO idea what happened. 

Today was her first day back at school in 2.5 weeks. She was so happy to be there, but it took ALOT out of her. She looked down right exhausted the whole 2 hours she was there. Her face was incredibly pale, her lips were very dry and cracking and she looked like she was just going to pass out. (I was there the whole time). Teacher said this is the most off-balance she had ever seen her... which is quite surprising to me because I felt like she wasn't doing too bad. She looked really sick. worse than she did yesterday even. So I was a little concerned and when we left, she said her stomach hurt her really bad and shew as just crying and crying (but it was really skinny, no bloating). I had to go to the Medi-Cal office for some paperwork, which is right across the parking lot so we just walked there and she fell asleep in my arms. She typically doesn't do this unless something is really off. When we got home, she was sleeping, but her nose was bleeding. YIKES, things just don't seem right to me today. She also has not peed at all today. I figure that possibly her altered state of consiousness and lack of pee is from possibly the lost feed, she might have been low on sugar so I started her tube feeding right away. And the bleeding nose is possibly from having too much tylenol round the clock for pain and so I called her GI doc to see if we could get a better pain plan for her. Just waiting on a call back now.

We also have YET to get an appointment set for Dr. Boles. I'm getting really ansy. I feel like if we knew for sure what was going wrong with her, we could avoid problems and I could at least feel much better about fighting for her with a firm diagnosis to stand on. Like right now, I won't take her to the ER unless things are so bad she could die. That's how much faith I have lost in any kind of treatment for her. After the last stay at the hospital, everything that has anything to do with needing to go inpatient is just nightmarish. I might be going a bit overboard with all that, but that's how I feel right now. I feel like because of how she looks on the outside, she is automatically put into a "healthy child" category... one who just doesn't need preventative measures, or whose symptoms don't need to be taken seriously. I swear I was telling that doctor that something was wrong with her and he was telling me that she's fine and looks to be healing nicely... adn that VERY SAME DAY, she crashed hard! She could have died had we not been in the hospital! And THEN, he tries to tell me later that night that he thought it was all anxiety related and that there doesn't appear to be anything wrong with her... as she is barely consious. WHAT!?! And then 10 minutes later there's a huge flurry going on in her room about her being acidotic and hypoglycemic, and hypotensive. I hate you doctor, right now, i really do. Had it not been for your negligence, her recovery might not have been so scary. I really hope Quinn taught that resident a lesson... I really do.


Anyway, i've got a lot on my mind so I've been playing world of warcraft a lot, because it takes  my mind off the stuff I don't want to think about and for right now, that's a good thing.

This is how her belly has been looking, but it goes down if I take her off for a few hours.

 Being a Goof Ball

 

We are home

We actually got to come home last night. What a wonderful Thanks Giving treat. We didn't get home until after 11, but hey, at least we got there, something to be thankful for. Q is still quite sore. Her belly hurts from the surgery itself, poor bug. But she is tolerating her feedings wonderfully. Now we are going to focus on packing the weight back on that she lost through all of this, i'm sure it was quite a few pounds because she is so light right now.

 Right After Surgery

The Next Day

The Following Pictures and Video Are of the Day Right Before Her Crash

So, what's the verdict? What exactly happened to cause Quinn to get acidotic? Hmmm.... That's still a mystery. When we came back to general floor, a few of the nurses and staff who were there when Q crashed, before she got taken to the PICU couldn't believe that it was Quinn, walking (though very slow and unsteady). they were cheering her and were just amazed.

They were saying that they couldn't believe it because Quinn was so sick on 5100. and she was. She was the sickest kid on the floor, a rapid response to the PICU. When she crashed, she was in severe respiratory distress. There were honestly moments within those 24 hours that Quinn was her sickest that I thought she was dying. I learned that they didn't intubate her because of her blood pressure. It was too low to sedate her. and so she was struggling to breathe for a long time, but as long as her sats stayed up, they didn't want to until she couldn't keep them up anymore. Joe almost asked for them to just do it because she was struggling so much. It was painful to watch. They had to thrust her jaw forward and hold it there, switch her position multiple times, nothing seemed to stop her retractions...  except time.

The Following Pictures Were from the Day She Crashed

This Is How She Was Sitting When She Started Crashing

Q was on D5 IV fluids when she crashed. However when we got to the PICU, it was determined that she was hypoglycemic, and severely dehydrated. She got... 3 or 4 IV fluid boluses within a 4 hour period and tons of infusions to help her blood sugar. They wanted two lines for her, but she had no more veins. They had to place a PICC line. Her lowest blood pressure that I noticed was 71/(some teen#), I have no idea if it got any lower than that. she kept needing norepinephrine every hour to keep her blood pressures at a safe range. She was getting boluses... tons and tons of IV fluids, but she wasn't peeing. And so, they had to give her a catheter. Poor little booger. She was also connected to two IV antibiotics and two stomach drains. By this time, Quinn had lines everywhere and her face was swollen.

Below: when she started opening her eyes (Monday afternoon)

And she did get better. by evening the next day, Quinn was awake and even doing her best to color. the next day, she almost had enough strength to sit up on her own. And the day after that, She was sitting up. Though she was still having low blood pressure issues, and still kinda does, she dose well with it. she got better so quickly, it was a miracle.

 The picture below is of Quinn with the Respiratory Therapist. She REALLY liked him. Not only was he nice, but he was cute too lol! He was with Quinn when she started crashing and when he saw her here, the next day, he said it was like night and day! and it really was.

Quinn's surgeon said it might be a good idea to continue pursuing the mitochondrial or any metabolic diagnosis. There is no explanation for why she became so sick, and then recovered so fast.

But the surgery resident had her own theory when she came in to discharge us last night. She said that they really don't know, but hte only explanation they could come up with was that it was caused from anxiety and pain medications.... hmmmm.... that's a sucky explanation considering that my child was in severe pain, at the time of her crash, she was on a very tiny amount of morphine, and even weaning her from that didn't really change much, and I don't know how anxiety can cause hypoglycemia, respiratory distress, severe dehydration and low blood pressure... that's stupid to even suggest that it's what happened. Her surgeon said that her response to the surgery was definitely not normal at all. My guess is that it has something to do with mitochondrial myopathy...

we are still waiting on Dr. B to review her records. We don't even have an appointment date for him.

These Are Videos of The Seizures She Was Having The Night and Morning Before She Crashed (I was unable to get the worst of these on tape.)

Heading out of PICU!

Hopefully anyway. we are still just waiting on a room. Then hopefully we can head to general peds floor and get focused on heading home. She started some j tube feedings. only at 10ml/hr right now. They are taking it slow and increasing it every 6 hours. so hopefully, she tolerates well and she can get off the tpn.

The doctors are STILL unsure of what happened.  I can explain my thoughts more on that some other time. for now, back to Quinn in the hospital. She's probably sleeping, but still, I want to be with her when they decide to move her. Hoping we can maybe request a wagon ride to the new floor! that would be nice.

I personally E-mailed dr. B in CHLA about her records, because they are STILL in review, and then i was told it would take many, many months to get an appointmetn with him, but I emailed him about our hospital stay and hopefully, that might get things moving along faster for us. Crossing fingers, at this point,  I think it's pretty obvious what Quinn's Diagnosis is and I want a solid confirmation. I never want to see Quinn get that sick ever again.

Doing Better

Quinn is doing much better. They ended up having to cath her last night. so she's got lots of tubes, but she is doing well. She woke up a little bit this morning. Her blood gasses are looking much better and more normal. She is still having low blood pressure issues and the doctor said that if we can get her blood pressures to stabalize without needing the norepinephrine, we could possibly get out of the PICU in a day or two. She is doing so much better though and having very minimal retractions. Her heart rate is normal again. Woo hoo!!! It was a very scary night. WE still are unsure of what exactly is going on with her. The surgeon feels though that this is not a result of the surgery because she seems to be healing normal with her surgery. Her g drain stopped draining the dark green nastiness. Her J is pushing out tons of bile though, but she seems to be ok. She is very drowsy however and she looks unwell, but much much better than what she looked last night. We are so grateful that she has improved. She starts TPN tonight. Thank you for the prayers and well wishes. I don't think we will be able to get home before Thanks Giving, but you never know. she may surprise us. We got into the Ronald McDonald house (family has been helping with hotel accomodations so this will be a relief for them)

Keep praying that she continues to do well so we can go home and HOPEFULLY the J can help her.

She's in PICU

I gotta sleep so I decided to force myself out the hospital for at least a few good hours of sleep. Joe is with Quinn so that comforts me... a little.

I have only one good thing to report... Quinn is at least breathing on her own... not without difficulty, but she is at least doing it. That's it. So... what happened?

When I left last night, Quinn was still spasming. When I arrived this morning, Quinn was still spasming. The retard resident wouldn't make a decision about whether or not to start atavan. Im telling him to just do something about the spasms, so some five hours later, we started the atavan, which stopped the spasming. And they then put her on a continuous morphine drip for the extreme pain she was in. Her retard nurse thought we should get her up and moving.. at least sitting up because she had been laying in the same spot since Friday. I thought it wasn't a bad idea, as long as she wasn't in severe pain from it like she had been. The morphine did its job and she was feeling better, she had an EEG too and she also got her hair washed from Auntie. She was feeling ok. We sat her up in the chair for a good 20 minutes, until she started crying from pain. I figured tummy, but she was clutching her chest and the heart monitor was reading 160+ bpm. I grabbed her nurse and she is trying to help. she grabs other nurses, while i'm tryingto settle her down, her chest was hurting so badly and her heart rate was only going up. And then they ripped off her gown and her chest was sinking in really hard with every breath. I look up and all of a sudden, Quinn's room is filled with like... everyone on staff. Apparently, they called a code. PICU doc is in there talking to retard resident, who is saying that she has been stable the entire stay so far. whne her heart rate wasn't stabalizing and she continued with respiratory distress, they decided to take her into the PICU. It was scary!

So she gets in bed and seems to be doing well, they were just planning on watching her for the time. at first, they thought she was just having a hard time with the pain and thta it was just too early to sit her up and she over-exerted herself. EEG and EKG were normal. The original plan was just to keep her in PICU over night to monitor and move her back to general peds tomorrow. Met up with retard resident in the hall and he said he thought she was fine, just over-exerted herself. But then, Quinn's blood pressure started to plummit to dangerous ranges, she continued to be tachycardic and she continued respiratory distress and she was not very responsive. First round of blood showed her to be severely hypoglycemic (low blood sugar). By the time all labs were in, Q was spiking fever, BP was really low and she was still tachy. Just in and out of conciousness. She was then found to be acidotic. I tell you, for the past 5 hours or so, it's been a flurry of doctors and everything running in there. They decided to do a PICC line because she was running out of access. For a child that fights every IV and blood draw, she barely put up any fight at all, even when she was getting cathed. WE are still waiting to see what cultures could be growing, but right now, she is still very sick. The only good thing is that she is still breathing on her own, though she is retracting quite a bit and we are having to switch her position a lot. Her sats have remained very good throughout this entire time though on 1 L of o2.

Please pray that she is ok. I'm really worried about her. Everything that I feared about this surgery happened and now i'm feeling like a terrible mommy for putting her through this! I'm grateful for where she is right now because everything is getting done so fast and the nurses and doctors seem more caring and competent.

I need to get some sleep now. I might not be able to update much since my phone can't type on blogspot for some reason.

Update

Quinn went in Friday morning for her Roux En Y jejunostomy. The surgery went as expected and she came out of anesthesia just fine. The problem was finding the right concoction of meds to keep her comfortable. I'm unsure what meds they had her on in the beginning, but it was a lot and she was still in a lot of pain and after a few hours we finally found lots of morphine and lots of tordorol (could be spelled wrong) was right enough to help her out. In this time, Quinn started spasming. At first it was juts one full body spasm every few minutes and at first we thought it was just her reaction to how much pain she was in, but it kept happening and then she had a really bad and violent attack of the spasms that lasted for a good two minutes. We yelled for nurses and the nurse came and helped us and then Q started turning gray! OMG! it was so scary, scary, scary. Luckily, the gray only lasted for like 20-30 seconds and then she stabalized and we were told that she was having seizures. Her J drain then started pouring out black stuff, she was in a ton of pain and i noticed that she wasn't on a g drain. So I told the nurses to put her on a g drain (which by the way is still not ferral bags, becaue apparently this hospital doesn't believe in ferral bags...) So we have been wrapping her g drain in diapers. The draining of the g seemed to relieve some of her pain. She continued to have the seizures into the evening and she was started on more morphine and atavan to try and control them. She was so drugged up on so many medications. It was a very, very rough day for her. She also hadn't peed for a long time and they were just about to cath her when she finally peed. She then developed a fever... of only 99.8ish.

So, during all this pain for her, she starts  getting retractions (difficulty breathing) and her lung sounds are clear, but low lung volumes. so she's getting a breathing treatment and we get word that the doctor wants to push her nighttime meds through her G. Me, thinking doc should know (shame on me) decided to just do it and she starts writhing in pain. While nurse is trying to page the doctor, she is still in tons of pain, i took it upon myself to open her g and let it drain, obviously, she drained her meds. Well, the doc got pissed and told the nurse that I shouldn't be interfering with her seizure meds, especially because she's having seizures. So i told the nurse to page that doctor so i could have a few words with him, and we did have a few words. (Cheryl, a fellow mito mom was here during all this and she was such a great support and helped me) He turned out to be an idiot... lol! I told him that i wanted her on IV meds and he said it can't be done without a neuro consult and yadda yadda yadda... he thinks that since she has had her g in for a while, she should automatically be able to tolerate that small amount. Well, that small amount is not hte problem, you dumb doctor! The problem is that she is draining so much gastric juices that when you put the meds in, and then want to clamp the g for 30 minutes, pressure and gastric juices are building up inside, causing her pain. DUH! Besides, she got the j tube for a reason! So anyway, we figure that we can at least get Keppra in IV form so we at least KNOW she is getting SOME of her seizure meds and we are just gonna push Trileptal and Zonogran through the g... at very slow intervals. I can tell you, I am pretty certain by now that she is NOT absorbing her meds through the g, but whatever they think she is but i'm almost positive it's just sitting in there and getting drained becaus i'm watching it happen.

So she's on ALL these meds to try and keep her pain to a minimum and all these medications should have knocked her out. By hour 13 post-op, Q was still awake, doped up on meds and very obviously exhausted. She started hallucinating. She first started crying really bad and being really scared about monsters in her room! it was difficult to console her. Then I decided to try and rest up and all of a sudden she starts screaming... seemingly in agonizing pain. I grabbed the nurse thinking something was really wrong with her stomach and we are trying to figure out why she is screaming and her legs are all in the air stiff and she is so scared and said that the spiders were biting her! Yeah, by this time it was obvious to me and the nurse that she was hallucinating. Probably from the medications. She finally fell asleep, 15 hours after coming out of surgery. Only to sleep for about 3-4 hours before being up again for another 16 hours.

So, Saturday, seemed a little better. She was peeing regularly though she just wants to so badly go to the restroom ,and not have to pee in a diaper, it's impossible right now. just the slightest movement sends her screaming in agonizing pain. All day, she was finally comfortable for the most part however anytime we had to readjust her for any reason, she was in agony. So her J drain has still been draining this black stuff, which the doc says is not really normal, but not too big of a concern yet. And her g drain is draining a ton of gastric juices and her meds that the docs seem to think are worth continuing to push into her g. Though she is still retracting (getting breathing treatments every six hours), she is in agony with movement only and the J is still draining black, her seizures were at least gone all day Saturday and by evening I felt maybe things were starting to calm down, but then, she developed this rash on her chest, she started to develop a fever again, her hands are now PEELING, yes all the skin on her hands are peeling (very strange), and she is seizing again. UGH! I decided to head to the hotel to try and get a good few hours of rest before I have to fight with the doctors again in the morning about whta to do about these g meds. She's just not absorbing them in my personal opinion. If she was already having a problem absorbing them before (hence the J tube!) Then she's definitely not going to now that her bowels are a wreck.

Though this post seems dreary and believe me, she is definitely having a very rough recovery, we have at least been able to get a few smiles out of her, family came and visted most of the day Saturday, she was laying in bed popping  bubbles. As long as she doesn't move, she's ok. Moving causes her to cry, which causes her to desat due to her breathing issues, which scares the crap out of me if she does it for longer than a minute.

I've been told that recovery is rough, and all the people who told me that were not joking, it's a very rough recovery. Please pray that tomorrow, we are able to find a good plan for her and that she can continue moving on to recovery. Still shooting for being home on Thanks Giving.