The Muscle Biopsy

Well, we face a delema. A challenge if you will. Quinn's neuro called and she is hesitant to do the muscle biopsy on Quinn before Quinn goes to see Dr. B in CHLA. The reason is because she does not want to get a piece of tissue, only for her to see the doctor and for him to want different testing on her. She basically wants her to see Dr. B and then go off his decision on what to do. She said they are getting so close to recognizing mito in blood, that she might not even need a muscle biopsy. So crazy! I see all these other children getting biopsies with no problems what so ever, but it's like pulling teeth out of a lion to get her one. I can understand her concerns on this. she doesn't want the biopsy to be contaminated and she doesn't want tests done on the tissue, only for her to have to go under for another sample and another biopsy because the tests ran weren't the right tests. It makes sense. It is risky putting Quinn under multiple times and I think she is also concerned about insurance issues. If the biopsy was done wrong or additional tests are needed that can not be done on the biopsy, insurance might not approve an additional biopsy. Basically, she wants the opinion of Dr. B and the tests that HE wants done to be done. She did her research and she consulted with a pathologist for Quinn and has been talking with a lot of doctors about Quinn's case and she said that Dr. B is a very well known doctor and is incredibly respected. So, basically, we are going to just to the J-tube surgery and not worry about the biopsy. I was actually surprised that she herself called me. This hospital is not known for doctors to speak personally over the phone. normally messages are conveyed through the nursing staff. So it was pleasant to get a call... we went over a few things as well, it was like having a mini appointment. Q is definitely not absorbing her meds correctly due to her motility and we discussed that. She also wants to do another EMG on Quinn because this might give Dr. B some answers as to what kind of testing to do on Quinn. Her last one was done about 3 years ago and it was normal. if this one comes out abnormal, we know that she is suffering from a muscle wasting of some sort.

So, finally we got all this figured out. Quinn is still having a lot of stomach pain, but I have to admit, she looks very good right now on her new formula. her face is filling out, she looks very healthy, her endurance seems to be improving. I'm seeing no seizure activity. She's not as tired. not "checking out" as often, her color is wonderful. no more pale/dark circles. Teachers at school are commenting on her well-being (in a good way) She seems sturdy, all around, things are looking pretty good. We are still however dealing with a lot of bloating and stomach pain and this is quite typical for her and the WHOLE reason why we started the j-tube journey back in May. So in that sense, nothing really has improved and we are still going through with the j-tube surgery <--- but I think we can get it laproscopically now instead of open so might cut the recovery time!

One of my biggest lessons I am seeing right now is that when Quinn is getting what she needs, she does so much better. This means that although she looks GREAT right now and I would LOVE to take her off all the medications and oxygen and see how things go, we just can't. We've been down that road countless times actually and it usually ends in disaster. The thing that sucks about it is that it's so strange seeing a child that looks SO GOOD outwardly on oxygen and a feeding tube all the time. i can't even imagine the kinds of things that must be going through people's heads when they see this little bright, happy, normal-looking girl hooked up to tubes. But, the people who are close enough to know us for longer than a day have to witness the pain and it's not fun. She hurts so bad if she eats anything more than a cracker or is on the pump for longer than 5 hours. But, the pain is something that we have to deal with so she can be healthy. Hopefully the Jtube surgery will minimize her pain and allow her to absorb her medications better.

Quinn still has this cough that isn't going away. That's really all it is... a cough. It's just staying there. sometimes i feel like it's probably related to her RAD because it seems to have days where it's worse than others, but she does cough a lot daily, and sometimes this causes her to go into a gagging/retching fit. Q tells me that it hurts her stomach and throat to be coughing so much and i don't really know if it is worth it enough to take her in to see the pediatricians because of a cough that has no other symptoms.

We went to the pumpkin patch this weekend and it was great! I have more pictures, but haven't put them on my computer. I'll probably post them later this week.

Below is just a small example of why Quinn would probably benefit from a Jtube. This is a portion of our daily battles.