Prayers for a road bump

Asking for prayers as we tackle what we are hoping is just a road bump in recovery. Things have moved pretty quickly last 24hrs. Charlotte's pulse ox has been showing low oxygen saturation past couple days. She has needed some minor oxygen support at night but today she plummeted. She is requiring oxygen support during day and night as her oxygen levels are down in the 70's without thisnsupport. It should be closer to 100. Along with a couple other findings, the team sprang into action this morning and much of the day has been a whirlwind of tests. She was given an X-ray a couple days ago when this began and it was repeated today. Along with much blood work, an abdominal ultrasound, and heart echocardiogram, the team ordered a battery of tests to determine what was going on. They are trying to rule out serious conditions that can develop during transplant, such as pcp pneumonia which can be fatal in these kids. Charlotte, however, is feeling pretty good. She is battling mostly nausea still with several episodes a day still and some minor pain on and off. She was even  quite playful today. She was a trooper during the tests and I'm exhausted from basically holding her oxygen tubes up to her face all day (which is honestly a small miracle she has tolerated the air being blown into her face all day! I found a way to give the tube a pet like personality and now she cuddles it calling it her buddy. Next step up would be the nasal canulas which upset her).

Some preliminary findings have returned this evening and all looks normal so far! Her lungs sound clear. No fever. X-ray clear with just some small amounts of fluid accumulating outside her lungs which is typical during transplant with all the blood products she requires. Her abdomen was a little tender near liver and bilirubin levels a little elevated but not drastically. Microscopic blood in urine that team feels is unrelated. And of course she is still positive for the rhino (cold) virus which could also play a role in this. Another factor besides her cold virus is fluid overload common with lots of blood transfusions required (she gets platelets daily right now), and her pain levels can impact her. breathing which seems shallow and labored. They have been weaning her off morphine but it was discovered today that the counter narcotic administered to help with itching was not reduced along with her morphine doses. Therefore, this medication has been countering the morphine which means she wasn't getting nearly the amount of pain relief intended. That could also play a role. These are my hopes becimause they are easy fixes. And temporary. But there are much more dangerous possibilities  still looming and we hope they are ruled out in the next day.

Instead of talking about discharge like we thought we would be only a few days ago, we are in limbo waiting to see what's going on with our girl. I know many of you sprang to action in prayer earlier today when you heard Charlotte was suddenly experiencing complications and I am so grateful! I feel so powerless sometimes the only thing I can think is there is power in prayer, and there is power in numbers. WHEN God hears us, surely that could make a difference. I feel like it must. And maybe it did because so far we are not in the woods but standing on the out skirts hoping to pass right by them. Knowledge is powerful but sometimes too much knowledge create doubt. We have heard about, read about, and seen the dangers that we can't unlearn. We have been so blessed so far and we know this. We keep praying God surrounds Charlotte and protects her during her battle. I feel like our prayers have been heard and answered so many times. 

I woke up today, our Taylor's 8th birthday, and felt the absence there. Never in a million years did I ever think I wouldn't be there for one of my children's birthday. I wanted to do our traditional birthday breakfast "mini-party" so badly. But I tried to focus on how much fun we were able to have this weekend together as a family celebrating with her thanks to our friends Deborah and Brad for each taking a turn to come be with Charlotte for a few hours each. With all the focus being on Charlotte so often, it was so wonderful to be able to shower Taylor with love and attention. So, the actual day really doesn't matter so much. Today I was exactly where I was meant and needed to be. Charlotte can have an 8th birthday. That's what we are working and praying so hard for. And we try to have faith that in this mission, our other children can thrive in their own right. I like to believe they all can have a happy and secure childhood even though their road is less traveled.