Saturday, February 22, 2014

Learning and Leaving (Soon!)

Max has had a really great couple of days. The doctors and nurses have been weaning him off of his oxygen tubes, the physical therapist said he's making great progress in loosening up his shoulders, and we've been getting to hold him a bunch.

Sleepy baby!

Snuggly baby!

Yesterday, we got the best update on his health of all. As long as things keep going in the direction they're going . . .


I think Max is on board to get out of the hospital soon.

The actual date seems to be up for debate though because everyone on the transplant team has a different time in mind. One of them says as early as Tuesday, another says the first week of March. Either way, they're all planning on sometime in the next two weeks which is amazing. Of course, once he's discharged we're still going to pretty much live at PCH because of all of his clinic visits and appointments but at least we'll get to have him at home with us.

This will be our house every night.

 The doctors and nurses have started training us on all his medications and they're starting discharge procedures. Under nurse supervision, we're able to give him his meds, change his diapers, bathe him, and overall be much more involved in his care which is great. Tomorrow we're going to learn how to insert his nasal tube for his meds and we've also meeting with various specialists such as a physical therapist, nutritionist, and speech therapist (for breast feeding, not for speaking).


Before we're released into the wild with him, we'll also do 24-48 hours of what's called "nesting" where we'll stay at the hospital and do everything like we would at home with Max. The nurses and doctors will be there as a backup, but they want to make sure we have a handle on the care he'll need once he's home.

In the meantime, he's looking great! His stats are good and he needs less and less respiratory support (he's nearly weaned off his oxygen tube). The nurse brought in a bouncy seat today so it looks like we'll try that out later and see how he likes it. I'm sure there's some kind of medical reason behind it like the car seat test (Max will sit in his car seat for 90 minutes while being monitored to see how he does before we take him home) but hopefully Max will have some fun, too.


  1. Yay! So glad you're all going home soon and so glad you're going to get to still breastfeed.

  2. What great news! I am so happy for you two!