Friday, November 13, 2009

Friday, 3:30 pm

They are going to have to put a feeding tube in for John. He's just not able to get enough nutrition and they are very concerned. He's burning a huge amount of calories just trying to breathe so this is a necessity. The numbers that show his protein levels in his body are incredibly low. The problem is that they don't know if he will be able to wear the BiPAP at night to help him breathe when the feeding tube is in. They have to take him to radiology to do the feeding tube, and we aren't sure if they can do it today or tomorrow. We're hoping for today. It's really hard for him to drink any of the protein drinks, but he got 2 of them down this morning. He's trying but it's just not enough.

They did just come and remove the wires that they had been using to pace his heart at first. It seems to be working fine so they were able to take one more set of things out of him. They also have him almost totally off of the milrinone, which is the magic juice that made his old heart work better. They use it on new hearts for a while to help with the transition. This will be the first time in over a year that he won't be on milrinone at all. So there are some good things going on. His breathing is about the same as yesterday, so no worse. The doctors have no idea what kind of time frame we are looking at for his lungs to heal, so we have absolutely no perception of what each day will bring. He sure has a long way to go, but nobody will work harder than he does to make this work.

Hope you all have a nice weekend, we'll try to here on this end.

2 comments:

  1. We are rooting for John. My prayer is for easy breathing. I know what it feels like to just want to be able to take a deep breath. Can't imagine the intensity of what this is like for him.
    Shelly Barber

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  2. Hi, Missy and John. I'm so happy to learn that the new heart is performing well for John. That's great news. I know the feeding tube is not what either of you wanted but anything to get some weight on him will be helpful. I remember talking to some fellow lung people, and there were a few who did get very skinny before transplant b/c they were burning up so many calories to breathe...just like John. I know this won't be a lengthy treatment, and I hope it starts working right away. Best wishes for a good weekend!
    Love, Jo Ellen

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