So, December was kind of nice. It took a while trying to get in the swing of balancing Quinn's pain and feeds and her small intestines were still getting bloated. But we started running into problems with lots of pain. Her fingernails also started falling off! Yes, every single one of her fingernails were falling off. The pediatrician said that this was due to clubbing of her fingers and her nails weren't getting enough nutrients to keep her nails growing. This was due to a chronic lack of oxygen. This also coincided with the fact that we were unable to provide her oxygen, due to the insurance issues. Sadly, this piece of information didn't help us get her oxygen any faster, which is total bullshit! But, we did EVENTUALLY get approved, but only for 10 tanks a month and we STILL can't get approved for a pulse oximeter. It's a little loopy, but i'm writing letters to the state about this and in the appeal process.
Quinn also had a birthday January 17th! she turned 5! It's amazing, after such a rough year and a very scary November... It's amazing to see her laughing and smiling and running around on her Birthday. We went to Chuckie Cheese. She had a lot of fun.
She also got her medical stroller! WoW! I LOVE IT!!! Things are so much easier to do! I can basically pack that thing with all our stuff. It holds a tank and has an IV pole... it's the greatest! Unfortunately, when she's it in, it makes it seem like I have a kid who can't walk. so we sometimes get weird looks when I take her out and let her run around, but people just don't understand, the thing needed to hold a tank and that's the best chair for holding an o2 tank.
now the ugly...
Quinn's stomach causes her chronic pain. It is always on her right side where her J tube is and in her small intestine. So basically, we swapped one evil for another. Instead of her stomach getting bloated and painful, we are now dealing iwth her intestines becoming bloated and painful. You can actually see her intestines bulging out when the pain is really bad. we have been given Ferral bags to help. she blows them up like a balloon and when her motility is very slow, the feeds actually reverse back up into her stomach. She also had some bloodwork taken for nutrition and we found out that she is low on Protein. She has also been having problems with hypoglycemia and so now we have to check her twice a day, if she is off her feeds for a period of time, her blood sugars drop dangerously low. Pretty much, Quinn's stomach is progressively getting worse to the point that we have been faced with the Central Line nightmare. Here's what happened this week...
Over the weekend, Q had a fever and a cough and some really bad stomach pain. Typically, because it wasn't THAT bad for her pain, but her J tube looked weird, it had some weird crusty green stuff that i couldn't get off with soaking and peroxide and she was just in a lot of pain. So I decided to take her to the pediatrician, mainly, i thought she just had some kind of infection and needed antibiotics. When the pedi couldn't find a source for her fever, she become worried because she couldn't hear any bowel sounds and so she sent us to our local ER to get some Xrays and evaluate for possible appendicitis. At the ER, she had Xrays, Ultra sound and a CT scan. The radiologist read that the CT scan indicated that her J tube was acutally OUT of the Bowels and IN the abdomnial wall! So, off to Loma Linda.
There, she had multiple tube checks, which was unclear as to whether or not her tube was in the right spot. They did small bowel follow throughs to check for blockage and couldn't find any, however they did say that her small intestine was very slow and many hours after she had contrast in her J and G, it was still there. So basically the Xrays showed that her motility was incredibly slow. Thankfully though, the tube was found to be in the right spot, eventually. She had her GI, her surgeon and her GI on her Team following her the whole time we were there. The surgeon said that unfortunately, surgically, he can't help her. The problem with quinn is mechanical... there's no surgery, not even an ACE that is going to help her contract her intestines to move food through. He told me that the only other option is supplemental TPN. She is getting twice the amount of protein she needs in her tube feeds and more than enough nutrition, however due to her slow motility, it's just not enough. Well, for me, because of her normal appearance, TPN is just not an option. She is growing on the J tube feeds, yes we have some issues, but she is mainataining a very healthy weight. I asked them to just slowly take hte feeds slow and try and work her back up to her 30ml/hr. We did that and she did fine. she had a few days of gut rest on D10 IV fluids and she did much better. It was kinda like we just jump-started her intestines again. I think they just needed a break. so we came home last night. Her motility is still very slow, but we are making it work for right now. She is now on some protein supplements and we are just going to go from there.
I really don't want Quinn to have a central line. AT ALL. I'd rather explore other options to try and get her intestines to work better. Although Q does not have a solid Mitochondrial diagnosis, quinn's GI doctor made it very clear to me that she presents herself as typical mito. Especially with her gut function and that he is going to treat her as a Mito child he really wants her on the mito cocktail to try and slow down the disease progression. I knew in my heart back in 2009 that Quinn wasn't a normal child, she had a rough start, but she was sooo healthy in 2009! We had no hospitalizations, just follow ups with the specialists every 6 months and every ounce of me wanted to believe that she really was outgrowing all of her issues. I was almost completely convinced that she was! Then 2010 hit us like a ton of bricks and it's been downhill from there.
We actually have an appointment to see Dr. B in CHLA on April 7th. I'm getting nervous. I want to put together a binder of her medical life for him. Pictures, healthy labs, sick labs, test results and etc... Well, this is going to take A LOT of work.
So all in all, Quinn's weight is back to normal, but we are seeing progression with the disease and it's painful. I really enjoy our pockets of health, but moments when the evidence is clear is very hearbreaking. the most difficult time with this hospital stay was the term mitochondrial disease being thrown around easily now, the ah.. that's why this is happening and that's why that has happened, and then the bleak future, particularly with her gut function. it can be quite hard to take in now that all the doctors that ever told me that she was going to outgrow her issues are less optimistic.
Lots of pictures!
Christmas 2010!
December 2010!
December 2010!
Happy 5th Birthday, Quinn!
School January 2011!
Quinn's Chair!
2 comments:
Sweet Quinn! You have the same wheelchair as my Emily has, only hers is purple. :)
I am sorry that Quinn is showing progression of disease. We are in the same boat. We have done TPN before, for a 6 month period. It's not fun. I think you are right in avoiding it if at all possible. I hate that mito is being thrown around in your life too. Hang in there ... you have such a beautiful girl!
Love the pics!!
I still can't believe they won't give you a pulse ox!! That is just crazy to me. I'm glad to hear she got oxygen and a wheelchair. I totally can see what you mean by people looking at her and you funny when she gets out of the chair to do things. Those people are lucky they aren't in your position. Who cares what they all think! I'm tired of people looking at our kids and thinking that there is nothing wrong because they look good. Well Maggie doesn't look good anymore but you know what I mean. People shouldn't judge. I'm glad Quinn is able to hold weight wise and I pray she will continue to do so. I totally understand you apprehension with TPN. I am in the same boat.
Praying!!
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