Ash continues to spike fevers. Its been over 24 hours of this off and on again fever. Late in the day she started coughing continuously. Then her nose began running. It lasted most of the night. Her lungs sound completely clear and her chest x-ray is too. Her oxygen sats are dropping into the low 90's and no one is very happy about it. When she's sleeping they've been as low as 85. Currently we can't find a reason for this change.
As far as I know the plan is still in place to take her back to the OR for a bowel biopsy. Since her fevers haven't ceased she will not get a central line at this time. My suspicion is that we need to pull out this current one because it is probably the cause of the fever, but they aren't willing to do this since she has no access. We will continue to treat the unknown with antibiotic coverage even though we don't know if it is helping or hurting. They will be placing the art line so that we may have a way to draw labs without constantly sticking her. Like I said, this is what I think is still going to happen. Its not ideal to put her to sleep with a fever, but the biopsy can't wait.
As it stands Ashley will still have to have a line placed in femoral vein which will require yet another slot in the OR once she has been fever free for 48 hours.
In the early morning hours Dave and laid still and listened to her coughing both secretly hoping this might be the cause of the heavy stool output. If it were some type of viral something that included fevers, vomiting, coughing, and runny nose that would almost be considered a blessing for us at this point. Fever, coughing and runny nose are NOT symptoms of rejection. Vomiting and excessive stool output are. How sad it truly is to be hoping and praying that your baby is sick, but not really sick. I'll never understand why her life must be this way.
We had hoped that her fevers would cease and that she might perk up a little bit so that after the biopsy was finished we might have the opportunity to take her home for a few days. In our life a few days is such a gift. I watched her big brother fall apart last night. As I stepped into his bedroom to apologize for snapping at him and to ask his forgiveness for it the tears were slipping down his cheeks. He was trying to look down and appear to be concentrating on making his bed, but I knew he was crying. I asked if he were angry with me for responding to his messy bedroom the way that I did and he shook his head no. The tears kept falling. I asked lots of silly questions trying to get to the bottom of it while making him laugh. It wasn't working. I finally asked what I knew was the answer to all of our broken hearts. "Are you upset because your sister is sick?" Flood gates. From my 13 year old and his broken heart. "I'm just so sick of her being sick and having to leave. I'm sick of it. Its not fair." What do you say to that? I'm sick of it too. I really am. He's worried about her and worried about us leaving for Omaha. None of this is fair. Not to him, not to Allie, not to Dave, not to me, but especially not to Ashley Kate. We are all needing for her to just have a period of health. Give us 6 months, a year. Anything to allow her body to get a break from being broken and allow her mind to heal, her body to grow, and her strength to return. Anyway, it looks as though even those few days won't be a possibility. More than likely we will have to wait here in the PICU for the biopsy results. Once they are in, and I'm being completely honest with you here, I think we will be boarding a plane and on our way out for the summer.
If this fever would break I'd snatch her up and take her 45 minutes down the road to spend a few days in our little yellow house. They could be the last ones she ever has there. Our house is expected to sell quickly. There are no promises of course, but each day away from it is breaking my heart. I just wanted to enjoy some more time there before moving. At this point Dave is doing his best to keep it cleaned up and ready for showings. On top of working at the office, finishing up the kids last two day of school and all the activities, and coming back and forth to Shreveport to see Ash in case she has to leaves. His job is much harder than mine. He has to keep going, going, going in spite of his broken heart. I just sit her and rock our baby with mine.