I've been slacking here for a few weeks. There's not much visable change to Bettie since her second MRI on week 7. Today, we had her last MRI, yippee. We had a new anesthesiologist who wanted to use a different sedation than she had the last two MRI's. The tech told me because of the new med I wouldn't be able to hold Addison until she fell asleep. Umm what? I was pretty nervous. During her first MRI not holding her was a nightmare as she fought the drug. But my worries went unfounded when within seconds of the sedation being pushed her eyes grew heavy. She did great through the whole thing. She did start kicking during the end which made us a little uneasy, but she stayed asleep. It took her forever to wake up though and the sedation was shorter acting than the one she had before. That doesn't make sense but whatever. She slept on and off the whole time we were at Children's and the three hours it takes to drive home.
We were at the hospital for a very long day. After the MRI we had our regular appointment in the Hot Clinic. They couldn't get her PICC to return blood which is bad. They always make sure she has blood return to make sure the line is in the appropriate place. If not the Vincristine could eat her tissue causing scarring. So after a bunch of fiddling they put TPA, a clot busting med, in her line and let it sit for thirty minutes and tried again. Yes, success! Renee, our nurse, thinks a clot probably formed at the end of the line. We could flush it because the fluid pushes the clot out and when you draw back the clot "flaps" over the end of the line making it impossible to draw back any blood. So the TPA blew threw the clot and once again made life happy. Little hiccups like this always make me a bit nervous.
Addison's arm looks a lot better today. On Wednesday I had to have the home health care nurse come and change her dressing. She had been picking at it and I thought she was just discovering it. However, on Wed. morning when I went to flush it I noticed one corner was completely loose and her skin underneath was all red. When the nurse changed the dressing it was soaking wet underneath and her skin ripped when it came off. The nurse speculated that her arm was weeping and causing the dampness. And I'm guessing that's why she was picking at it all week. It probably itched like the dickens. Poor little kid. Anyway, today her arm looked fabulous and not weeping. So we are once again on the road to a better place. But all these are signs that it's getting near time to have her line come out.
Dr. Kelly said they would review her MRI on Monday and then call us with a tentative plan of what treatment we are doing next. Her trial was only for 12 weeks and now we need to come up with a plan of action from here on out. Dr. Kelly is thinking we will probably start her on Propranolol, a blood pressure med, which will control the growth. Down side to that is it can interfere with how the body metabolizes blood sugar and can cause seizures. They would hospitalize her for a few days when they first put her on it and check her blood sugars. Additionally, he said if we do go that route they would give us some tips on how to stabilize her blood sugars which include waking her up to feed at night. NOOOOOOO. I just barley got her to sleep through the night again after her RSV hospitalization busted that routine. But, we will do whatever it takes. I am a bit nervous but like I said to Ryan it'll probably be like this whole situation has been. Everything has sounded super scary and complex but as we settle in and it all become a crazy sort of normal it's not so scary and I look back and wonder why I fretted so much. So that's where we may be headed. We will know more on Monday after her team reviews her progress and the MRI.
Milly's Birth Story
2 years ago