Day 11
Afton has had a number of changes over the last few days. She was extabated (removed from her breathing tube) two days ago. This process went well and she is doing a good job breathing on her own.
Her legs are still very swollen due to the dialysis catheter. This created a blood clot that goes from her knee up into her groin. They will continue to monitor this but her body needs to auto-correct the blood flow around the clot, which may take some time. She will need to be given 2 shots a day for 3 months to help with this.
She had another echocardiogram done on her heart and from that standpoint everything has returned back to normal. So there are no major long term concerns with her heart function.
She had an MRI done on her head on Monday to help assess any damage from the high ammonia levels. Unfortunately, the neurologist believes that this traumatic experience has caused brain damage, but to what degree we will not know for months or possibly years. We understand that this brings many questions to mind and we want to express that we are feeling the same way. There are no definite answers at this time and that is hard for all of us to accept. We are learning to take things one day at a time. Each time she reaches a new milestone (sitting, standing, walking, speaking, etc) it will help us understand where her limitations will or will not be.
We continue to be optimistic and hopefully her brain will do amazing things. She is only 11 days old and babies are very unpredictable. This is why they cannot tell us what to expect in the future. If she were an adult the impact would be much more predictable. As far as today, we look for signs that she can do things that babies would do which include: crying, pooping, sucking, breathing, looking around. She is able to do all these things. Today she has been crying quite a bit. She is still on a feeding tube, but has been sucking on a nook occasionally. They have turned her feeding tube off for three hours to encourage her to get hungry which will eventually let us try bottle feeding. If the feeding tube is constantly on, there is no motivation for her to suck on a bottle. This will be the next big step for her.
Today she was transferred out of intensive care. We have mixed feelings about this. We have definitely developed a comfort level with the doctors in the PICU, so the transition will be hard for us as parents. However, this is good step in getting Afton ready to come home. They are starting to educate us on her care for when she does return home. We are excited for this to happen, but obviously are dealing with a lot based on the neurological results. It has been a very emotional and difficult time for us both, but we are working on taking things one day at a time and not trying to predict the future. Thanks for all your thoughts and prayers. Please keep them coming.
