Let me first say that I admire all medical personnel. I have respect for them. I appreciate them. I know that when they make decisions for my child that it is in his best interest medically. However, I don't think that they always think through how their decisions will affect him emotionally. You see, Parker already has high anxiety when it comes to strangers, doctors, and hospitals. Since transplant, we have made a lot of headway with him, and he was doing much better with anxiety. For the first time ever, we were able to do lab work, take blood pressures, get weights, and listen to his breathing without a single argument from him. This hospital stay not only erased all of that progress, but I'm pretty sure it pushed us even further back than we were in the beginning.
Let me give you a "hypothetical" situation. Imagine that you have just fallen into a deep sleep, and are resting peacefully. You are suddenly jolted awake, and are being held down forcefully by two grown adults who are 10 times your size. One of those adults is now puncturing you with a needle, and the other is taping a bag around your.. personal area. That's how my kid woke up at 12 o'clock in the morning. Traumatizing much? This is the extreme case of what goes on, but I swear to you that somewhere in the nursing station there is a light or bell that goes off whenever a patient is resting peacefully. I'm convinced of this because not a single nurse comes in here for vitals, IV placement checks, medicine, lab work, or culture swabs until I have spent an hour of my time consoling him to sleep. Like clockwork, ten minutes after he's sleeping, they come strolling in to do whatever poking and prodding they have to do. Once they are done, they waltz out of here, and I spend another hour consoling him to sleep.
After our eventful experience, Parker didn't spike another fever until 9 o'clock this morning, and it came down immediately with a dose of Tylenol. His kidney function is continuing to look better. Today it dropped from 0.8 to 0.6, which is a move in the right direction. His ANC levels are continuing to increase, going from 0.5 to 1.5. This means that his immune system is getting stronger since we lowered the anti-rejection medicines. Hopefully this will allow his body to start fighting off the virus on its own. The only negative news that we have today is that his body isn't getting adequate nutrition. He hasn't been able to eat or drink in over a week, and the diarrhea is ridding his body of all of the good nutrients. The colitis from the virus still has his stomach and intestines entirely too sensitive for us to give him nutrition that way, and his bouts of diarrhea will only increase if he eats orally. So we are waiting to hear for the surgery team for them to place a PICC line. This will allow us to give him TPN, which is fluid packed with proteins, carbohydrates, lipids and his total daily nutrition needed, but doing so bypassing the intestinal tract. As of now, the operating room is scheduled for 6 o'clock tonight since he has to be NPO for 6 hours before the procedure. Hopefully he will begin to recover faster if we can get him packed with some nutrients.
Please continue to pray. As of now the doctors say that we will "hopefully" be out of here by Christmas. This is not how we envisioned spending our holidays with Parker.