Today was M’s first biopsy post-transplant. Older kids would have had three by now, but because M’s veins are smaller and more difficult to navigate, they only do them once a month instead of once a week. All signs are positive at this point. The biopsy showed good heart function and while they were there, they checked the arterial walls to get a baseline. I guess that hardening of the arteries is a problem for many transplant recipients. Having a baseline allows them to track Mackenzie’s arteries and start her on a drug regimen if her arteries start to show signs of hardening. This approach has been successful, so I’m glad they have the baseline now.
They also made a few changes to her drug regimen. They went up on her cyclosporin a slight bit because her readings are still slightly below where they want them to be. They went down on her prednisone slightly – she is on a long wean from it. She is still on her methadone wean as well, but will be done with that in another week.
She is eating a lot – 100 ml at a feed, but only taking about 20-40 ml from the bottle. The rest has to go through her NG tube through a pump. We are going to call Occupational Therapy tomorrow to make an appointment with them to work on her feeding issues. I feel like she will be good once we move to solids because she really chews on the nipple more than she sucks on it, but who knows? I am hoping OT can give us some ideas on how to improve it as putting the formula through the pump is time consuming, but for now, we’ll take it.
She has not gained any weight since she got out of the hospital, which is a bit disappointing as well. But, I am hoping that upping her feeds to 100 ml from 70-80 ml and the increase in the calorie load in the formula from 24 to 26 calorie will make this week a big week for her growth-wise. She is so skinny and little still, its a bit disconcerting when we think about how old she is. I don’t really think about it much until I see another baby that is younger than her, but seems so much bigger than she is! I figure she will probably always be a bit on the small size, but being almost six months old and still in newborn clothes is a little ridiculous!
We will get the biopsy results for rejection tomorrow. We are optimistic since all of her heart function has been very good on both the echoes and during the cath today. But, it will be good to know for sure.