Saturday, December 20, 2008

Update

I've definitely jinxed it. Our new "outta here" date is Tuesday. We've had some delays getting the home TPN/lipids pumps delivered and getting all his meds ordered and delivered, among other general issues. As we learned at Thanksgiving, getting anything done during the holidays is a pain in the medical world. We're not going to let ourselves get upset about it though, and we're still holding out hope for Christmas.

The transplant team and hem/onc are trying to decide whether to give Keegan another blood transfusion before he leaves. Every transfusion introduces more antibodies into Keegan's system, and should he ever need another heart in the future, it will make getting a match more complicated. Keegan needs something to help him out. His heart rate has gotten to extremely high rates, enough that they put him back on the heart monitors to watch it. His respiratory rate is high, and he is tiring easily, needing a nap about every 2.5 hours. His transplant doctor wants to put him back on a medication he was on after transplant that stimulates blood production. It bought him a good 6 months without needing blood or enormous amounts of iron/folic supplements. The resident on the floor and the transplant coordinators think we should just tank him up with blood one more time before he leaves. Hem/onc was "looking into" the best plan. Gray and I are of the opinion that giving him one more transfusion is no big deal in the long run. Boost him up and at least buy him 3 or 4 more weeks, then let the medications help keep him at the right levels. The last thing we want to do is go in for his regular twice-weekly labs right after Christmas, find out he needs blood badly, and have to end up right back in the hospital for a transfusion. This is our battle right now, and your prayers would be greatly appreciated here. Please pray (once again!) for communication and wisdom for Keegan's doctors that they will make decisions that give Keegan comfort, energy, and the ability to stay home for as long as possible.

Keegan seems to be doing ok on the increase we made yesterday to 30ml/hour of formula through his ng tube. He has also started taking water out of a sippy cup again - huge step forward! He continues to struggle with his stomach stopping processing the feeds every now and then, ususally while he's asleep. One of the GI docs said it's almost like his stomach falls asleep sometimes too. Luckily, we have him hooked up to a relief bag that lets the formula run into it, so that Keegan doesn't vomit every time his stomach stops digesting. When I got up at 6:30 this morning to give him one of his meds that's a rather large volume, I didn't look up to see that he had backed up into the relief bag. Well, the second I pushed that med down his tube (with the relief bag clamped off), he sat up and threw up all over the place. Then, right before his 12 hours of TPN was up, he got his line caught up with the heart monitor box and broke it. Luckily, his lipids were still connected, so he didn't bleed anywhere but back into his lipids. Time for sheet change number two of the morning - TPN smells like really strong vinegar and had to be changed immediately. What a way to start the day!

Other than that, we're just having a calm weekend and setting up our discharge plan. We will follow up at the hem/onc clinic at Legacy in a month. We will see our new GI doctor at Legacy as soon as clinic starts back up after the holidays. GI is making no more changes to Keegan's TPN or feeds until we meet the new doctor after the new year. We have done all his transplant follow-up until the middle of January, and the only other thing is to start his out-patient feeding therapy. He will also likely have physical therapy at home once a week. So, we're getting closer to the "h word"!! Thank you so much for helping us all get this far! We'll update again on Monday. Have a wonderful weekend, and stay warm!