Rough Day

Today we dove deep into the abyss and then climbed mountains.  What a day.

So yesterday the doctors took Abby off of the breathing tube.  She is not oxygen dependent and her lungs are in great shape.  It is her windpipe that is causing her problems.  So they took her off the breathing tube to see how she would do on her own. She was able to breath on her own for about three hours.  They then decided to put her on CPAP.  This helps keep her windpipe open as she breaths.  It is an apparatus that goes into her nostrils and adds just a little bit of pressure to assist her.

It is difficult to see Abby with the CPAP on.  It looks horrible even though it is much less evasive then the breathing tube.  I cried and I cried and I cried leaving her last night and then more crying this morning.  It is an experience that I do not wish on anyone.

This morning was trying.  They did not have a definitive plan for her at that point at I was very frustrated.  They 'talked' alot about what may happen with regards to tests and expectations but no concrete solutions were provided until our family meeting this afternoon.  Finally some answers!

So on Tuesday Abby will have a procedure where they will put a scope down her windpipe to rule out if she has a 'floppy windpipe' or not.  She will see a plastic surgeon to look at her face, tongue and throat to see if there are any complications there.  She will see an orthopedist on Monday to do tests on her bone structures.  I am so glad that some things are finally going to happen.  It's now not a 'maybe' she'll have these things done and I can look forward to next week.

The best part is that we are transferring her care to Childrens Hospital Boston sometime next week.  Brigham & Women's just thought it made more sense since  most of her care will need to be done there with all of their specialists.  Brigham & Women's and Children's Hospital share coordination of specialists.  If Abby only needed one consult, she would stay with BWH but since Abby has a  whole wide range of special needs it just makes sense to transfer her care over.  I received this news at our family meeting today and was tickled pink.  Finally some good news!!

So Abby is doing better tonight.  She is able to handle her cleaning and transitions of the CPAP.  She doesn't crash as much or get as worked up about it.  It can be really scary watching the nurses and doctors work on her and see her stats flux and hear the beeps on the machines!!

My biggest heartache is not being able to hear her crying.  Since she is on these machines it prohibits her from making much sound.  You can see her crying but can't hear her and I think that is super sad.  :(

My biggest blessing is being able to hold her and sing to her!  Awesome!!

Please continue to pray for her!!