Day 228: Finally Home

Well after 1 week in the hospital, we were finally able to come home. Bigger picture we had been in the hospital 13 out of the past 14 days including the chemo treatment and this issue. This was a big drain on all of us. Both Maria and myself had been switching turns daily at the hospital the entire time. The past couple days were especially taxing because the requirements for leaving kept changing and while we thought we would be leaving, we were told it was not time.

During a conversation with the doctors they explained that while they did not know what caused his blood levels to get out of balance, they are fairly confident that the pancreatitis was a result of a medicine they recently moved us to. This was extremely frustrating to hear, that the situation and pain Cristian experienced could have been avoided. As a result of this reaction we have reverted back to the original medicine Cristian was taking which was keeping his immune system suppressed. While that isn’t a desired outcome either, it is a “lesser of two evils” situation.

Because Cristian has now had pancreatitis two times in a relatively short time period, he is now at risk of getting it more easily in the future. We will be evaluating all chemo treatments and medication going forward to avoid things with this known side affect.

Even outside of medication there are other things which can cause pancreatitis, one of which is a fatty diet. Over the past couple months Cristian has been a very selective eater and primarily ate bacon or potato chips. These represent a large part of his diet, and are now no longer allowed due to the increased risk of future pancreatitis. With all of the things going on in Cristian’s world, here comes another change. We now must find new foods for him to eat and ensure that we aren’t doing anything at home to cause issues. Low fat and high protein foods, here we come. I doubt Cristian would be excited to read this, if he could read.

This past week has also added a new aspect to Cristian’s treatment which is less than desirable, constant rotation of doctors. During this 1 week stay we saw different doctors from one day to the next. Not as a result of new tests or specialists, but merely because of the rotation schedule they have implemented. While it’s understandable that a single doctors can’t work every day in a 1 calendar week period, the number of new faces (each with limited knowledge of Cristian’s prior days history) was disappointing. Hopefully this was the last time we will have an extended stay and won’t have to deal with the rotation schedules.

Aside from all that we are elated to be home. Seeing the kids play together, running around screening, and being able to put Cristian is his own bed are so rewarding. These are definitely “little things” but they make you feel so good as a parent after not having them for so long.