Our new/temporary home......9 West

Hannah's first couple days on the floor have been progressive and regressive.  She is now completely weaned off of her oxygen and is breathing on her own!  She is still getting some respiratory therapy, but they say her lungs sound open and clear.  Now her eating on the other hand hasn't been so promising.  We have had some issues trying to get her to keep her feeds through her NG tube down, and she refuses to take a bottle.  We were successful in getting her to take some drinks from a sippy cup.  It would be a great way to transition her, but I don't think she will drink the amount they want her to have in one sitting.  She still seems pretty interested in table foods, which is a good thing, but just not enough from a nutrition stand point.   We could not figure out why all of a sudden she wasn't tolerating her feeds. So her nurses and I discussed it, and I asked them to ask the Fellow to order a  chest X-ray to check the placement of her NG tube.  There it was..... The tube was placed just a little bit to far hitting her pyloric sphincter causing her to vomit.

The nurses came in and pulled her NG tube back a bit, and we are hoping that does the trick.  She has two of the greatest nurses tonight.  They were here the night we got the call and delivered us the news that the surgery time was set for her transplant.  Everything else all seems to be falling in a good place.  She is smiling again and as happy as she can be stuck in this place!  Greg and I had to learn some rules and about her medications today from the transplant coordinator.  Nothing to surprising.  She will be on quite a few medications when she gets home.  She will take 3 immunosuppressants, 3 antibiotics, a baby aspirin, a steroid, and maybe still her pain medicine if she still needs it.  So a total of 8-10 medications a day!  How are we going to keep up with that?  I am not to sure, but a part of me is pretty happy about being a nurse right about now!!  Starting at 3 months post transplant, these medications will start tapering off.  By the end of the year, she will be down to one medication and that is the one she will take for life as of now.  They have recently started to wean patients off their immunosuppressants if they are doing well, but Hannah has quite aways to go until we get to that point.

The plan now is to watch Hannah through the long weekend in hopes she picks up on eating and all labs remain stable.  If it all goes well we are hoping to head home sometime next week!!  I can not wait to be home again, all of us together.  I miss us being a family, and I miss my son so much.  I do see him about every other day but recently it has been getting harder for me to leave him.  He has seemed to grow up so much over this past month, and part of me feels like I missed it.  I just have to remind myself everyday that the summer just started so we have time!  Yesterday they had a small two man band playing in the garden here at the hospital.  He was out there right in front, the only kid trying to sing the songs, dancing, and clapping his hands.  It was the cutest thing.  For a moment there, I totally forgot about Hannah and all we have been through this past month.  All I could think about was how cute my son was being and how lucky I am to have such a great kid.   It was so refreshing to see Jacob out there just having a great time without a care in the world.  I was sitting in a beautiful garden next to the love of my life(yes I mean you Greg:) ), holding my beautiful and now healthy daughter, and watching the cutest little guy in the world.  I would have been perfectly fine being stuck in that moment forever.  I really couldn't ask for much more out of life.....

Have a great long weekend:)