Today is Day 15.
Peyton had a rough night. As I was sleeping, the nurses were watching Peyton's vitals and noticed her oxygen kept dipping down. It got down into the 60-70% range at one point. They came and checked on her and I wound up waking up. As I was waking, there were about 4 other people in the room - a couple nurses, a respiratory therapist and the resident on call. They wound up having to increase her oxygen flow quite a bit. The RT had to put a suction catheter down Peyton's nose to try to get anything out that might be blocking her airway. It seems as if it was a very large mucus plug that was preventing her from getting enough oxygen. Once that was cleared and my own heart began to beat again, her oxygen percentage came back to where it should be. It was a bit of a scary moment to be sure. Needless to say, I did not go back to sleep for a while afterwards even though her numbers were fine.
We had our family conference today. Ron was able to come from work to attend as well. There were a total of seven in the meeting, including ourselves. The big issue that we know is that Peyton's body is not absorbing things properly. She's losing protein, but we're not entirely sure where. We know she has a copper deficiency. We learned that over the summer after seeing the Geneticist in Boston. Since she came into the hospital this time, we have discovered that she had no recordable levels of iron. This wasn't the case a couple months ago. Her albumin low. So is her potassium. And now zinc. Fluid is spilling out into her tissue and it seems that no matter what is tried in an attempt to get the fluid off, nothing is truly working.
One idea is that there could be something wrong with her digestive system that is causing her to not absorb these things. Her tube feds were switched already to a more broken down version of what she's been getting for quite some time. It hasn't helped. The doctors are finding themselves chasing all these things which are not being absorbed. She has had two blood transfusions and an albumin infusion. Peyton has required multiple boluses of iron by IV as well as potassium by IV. Some of these treatments are not really a good thing to have to keep on doing.
Her current form of nutrition, as you may have guessed from everything I've stated above as well as what I've been posting during this stay, is not something that is sustainable. Essentially, she is malnourished even though she is technically getting all of her nutrition. If it's not being absorbed, what is it doing? The thought now is that we ought to consider a new {to her} form of nutrition called TPN. TPN is a form of nutrition that is given through an IV line. Since she has a port, it can go through there. The idea is that all of the correct nutrition would be formulated for her and be administered over most of the day. It contains sugar, carbs, protein, fats, electrolytes and trace elements. The theory is that it will be absorbed in her system this way. There would be no feeds going through her digestive system at all. It would give her gut a rest and, if there is anything wrong in that area, perhaps give it time to heal. If we get to a good point with that, then perhaps at some point they could do a scope and biopsy to see if they can figure out exactly what is going on in her gut. Right now, this is not an option.
As this is really the only viable option we have, this new TPN nutrition is what we will try starting tomorrow {Wednesday, Day 16}. I don't understand it well enough at all, so I don't understand how it is that fluid is spilling out into her tissues right now but TPN is supposed to stay in the system and not spill out. I am not a doctor. I have learned many things these past almost seven years, but this is not something I can claim to even remotely understand. The thought is that we could, in the next several days, get to a point where we can get her home and she would have this nutrition continue at home because she has a port. The gap between where we are now and where she needs to be to even consider going home is so enormous that I cannot fathom how that will happen, especially considering that I don't understand how putting this into her veins will stay in and be absorbed any better than the things that have been put in and did not stay in! Any medical professionals who wish to weigh in...click on the email me button over there on the right sidebar. Maybe it's all theoretical. I don't know. I know the options are not plentiful at this point. I also feel like there is more going on than just a digestive system issue.
Prior to the family conference, her Geneticist here at MUSC came into Peyton's room to do a skin biopsy. The Geneticist in Boston had that on his list of things that he needed from us. As long as she is here, they decided to get that taken care of. She did very well through the procedure, as did I. It was just done right here in her room. I held her arm during the procedure. I promised if I had to fall, it would be forward onto the bed. I did just fine, thank you very much!
When I returned to Peyton's room after the family conference, she was having an ultrasound on her leg {the one in the splint}. The swelling in her leg is down to her foot. The doctor wanted to be sure Peyton doesn't have a DVT. I haven't heard the results of the ultrasound yet.
Shortly after that was finished, a friend of mine visited. She was so kind as to bring coffee and a couple gifts for the girls. While she was there, another friend came up. We all three know each other from worship choir at church. It was so nice to see them. I also had breakfast brought to me by another friend. People have been so kind to us. I really truly appreciate everyone's thoughtfulness.
If anyone is reading this who has been on Peyton's medical team in the past two weeks, you know Peyton's got a thing for animals. It started with a pink hippo and then we added the quilt with the animals on it as well as the frog. Her bed is fast resembling Noah's ark with the addition of a little bear, Peter Rabbit, a penguin, giraffe, and Nemo!
