Hard Things And Happy Things…

On Wednesday, at her weekly appointment, the decision was made to admit her for some tests and a feeding tube.

She was so not thrilled, but to proceed with her transplant paperwork, her nutrition has to be better, and her BMI has to be much higher.

Lots of plans have been formed, and revised, and I think we have come up with a good plan for our girl. The decision was made to place an NG tube to make sure that she was able to tolerate feedings before they performed surgery.

Her Gtube surgery has been scheduled for this coming Tuesday, and though she was able to tolerate the feedings, she was miserable with the NGtube, and she stopped eating during the day, which of course, is not good. She became fussy and depressed, and the doctors were worried for her, so the NG tube is out! AND, she was released from the hospital for the weekend!

We will check back in on Monday night for her pre-op, and she will have the Gtube placement on Tuesday.

Of course, with tiny P, nothing is ever easy or straightforward, so what would be a few days in the hospital for a healthier child, will be quite a bit longer for our tiny P. We have been told to expect to be there for more than a week while she recovers, and while they make sure she can gain from the extra feedings. Also, because of our baby’s anatomy, some extra tests needed to be done to make sure of her stomach location for placement. Her stomach is a little rotated, but the concern was that her liver might be pushing into her stomach because it is so enlarged. I was glad that they did this study to give us a better idea of her anatomy, and it will hopefully make her tube surgery more successful.

So, big things for our girl this week…

Not only did tiny P have her first family day anniversary this week, and get admitted to the hospital, but on Thursday our girl was officially listed for heart transplant! What an incredible gift of hope our girl has been given!