Making plans…

Monday and Thursday are the two big days around the hospital for making new plans or changing old ones. Though everyday the doctors talk about and refine their orders, it is the “Grand Rounds” that brings all services together. Today the plan is to continue the steady slow pace of increasing formula feeds and decreasing TPN. Angel continues to have borderline high output and so the slow steady pace is looking to be the best way about things. Our plans are to bring Angel home next week but this may change when we get closer. Discharging home is a big ordeal so much so that the team will not attempt a discharge on Friday for fear that if something is missed there will be little help available over the weekend.
Angel will be switched today to a more concentrated formula, one that will provide more calories with less volume. As the volume increases many times so does the output and with increased output Angel will be in the hospital longer for follow up and further evaluation. At this point the team is on pace to have Angel off TPN in a few weeks. Figuring this will happen about the time we will be heading back to our original home.
The life after liver, bowel and pancreas transplant is one that is very complicated. More complicated than before being just on TPN at night and a few meds during the day. Angel will be immuno-suppressed and will require isolation, he will still be on TPN 12-14hrs a day, will require 18 hrs a day of formula feeds, has 10-12 oral medications up to 4 times a day, has an abdominal wound that requires dressing changes daily, still has his central line, g-tube, and an illeostomy. All of these things will be apart of his life and ours for sometime. Some may not be needed down the road but life in the next year or two is much more involved than the previous years. The upgrade for Angel in all of this is that he has fully functioning organs. The liver failure alone caused soo much grief for Angel and burdened him with daily struggles of just not feeling well. Also the nutritional status will be much improved. The combination of having a healthy liver and intact intestine will allow for Angel to grow and develop more normally. Already I see him engaging in more academic activities as he is thinking more clearly and is just feeling overall better.
This overall improvement has translated to having a much more active little boy on our hands. He told the doctor yesterday that it wasn’t soo fun having a big IV pole with pumps because he wasn’t able to “run free”. So today they allowed him to be off for two hours, completely off everything. I think this is one of the first times since his adoption day party. Once disconnected he played in his room for a few minutes, climbed up on the couch and window ceil and stood up on the small side table, after a few minutes more he wanted to go on a walk. After leaving his room at a slow pace he realized he was not attached to the pole and started to run. He ran all the way down the hall and to the playroom to ride the jeep and other ride on toys. It was quite a site, somewhat uncoordinated in his gate his run also resemble a bit of a skip…it was wonderful to see. After about an hour of play we went on a walk…not just any walk but one that went up and down stairs, on the dirt paths outside and just about anywhere that was not so easy to get around before.
So this is the new Angel, ready for the life after transplant. He is energetic and playful, a bit feisty and ready to play. It has been quite the adventure being here at the hospital for 2 months. We as a family will continue to adjust and adapt. We will be stronger for going through it together. We will continue to support this amazing little boy and will make plans to go home to start our new life together… hopefully as soon as next week.