23 Mar Wrapping up
It looks like we’re wrapping up this inpatient stay, although not nearly in the positive way that we would like. Ideally, the doctors don’t like to send patients home on TPN, but we’re not really in an ideal situation here. Gray and I said over the weekend we would push to go home at 12 hours of TPN. The attending physician said this morning that Keegan could very well be on TPN for another month or more. We were simply not willing to wait that out within the confines of this little room. We are very capable of working with our team outpatient to adjust and wean Keegan’s feeds and TPN as necessary from home.
The main reason we are doing this at home is because the team here has run out of ways to actively treat his infection. The drugs that were supposed to have helped him heal and shorten recovery time all but failed miserably. He will stay on the anti-parisitic for another 2 weeks to see if it has any help whatsoever over the long term. I mentioned yesterday that Keegan’s output increased dramatically yesterday, and it did not stop after I posted that. He had several dirty diapers overnight, which hasn’t happened for over a week. He had just as much output today during the day as yesterday. Given that we haven’t changed his feeds at all from the minimal drip, we have absolutely no idea why he is suddenly “getting worse”. But the only way to compensate for it at this point is to support his hydration and nutritional needs with TPN and wait it out. Which, of course, we would prefer to do from home. We are hoping that more time to recover is what he needs. What we can’t answer right now is at what point we consider his symptoms due to his general intenstinal issues versus due to the virus(es). That will have to be determined over the course of the next few weeks.
After some research by the nutrition department, we were able to tweak his nutritional needs and concentrate his current dose of TPN to 16 hours. It looks like he will be at that rate for some time while his intestines continue to heal. For those of you keeping track, Keegan will be on a very tiny drip of diluted formula through his g-tube 24 hours per day and on TPN and lipids for 16 hours per day. We are trying to think of some creative ways to allow him to still be mobile with three different pumps. This could get interesting. He will carry his formula pump in his backpack, as always, but the TPN and lipids are a different story. We’re looking for a kid-sized rolling backpack that he might be able to pull along with him. Thank God for dear friends who have gone before us to come up with these ideas! Thanks, Avery!
Most of the day was spent once again trying to keep Keegan entertained. He had some great visitors!
