27 Mar Update
Keegan definitely needs your prayers now. We did end up going in for a lab draw this morning. He had handled his overnight feeds fine and woke up in a good mood. He handled his lab draw pretty well, and we noticed the sun coming out from the clouds. We decided it was the perfect time to take Keegan to Fenway. We took the very abbreviated tour (basically a video in a luxury box because there was so much construction happening before opening day next weekend). Keegan fell asleep during the tour, so we grabbed a quick bite at the beer brewing company next door during his little nap . We then enjoyed another great, early-spring-in-Boston walk around the Emerald Necklace park back to our apartment.
We arrived back at the apartment for a bit, during which we received a call from our GI doc here. Keegan’s liver function was really poor in his labs today. They asked us to come back to the hospital to check some things. Keegan’s liver didn’t seem any more enlarged than before. His belly has become majorly distended again though. Since he didn’t have a fever or “act sick”, they decided to redraw some labs and let us go. Evidently, the type of liver problems Keegan has are usually triggered by an infection or drug reaction. Until now, we had attributed it to TPN because we couldn’t pinpoint an infection. He’s been off TPN now for a week, and before his discharge, his liver numbers were close to normal. The only medication he’s on now that has ever been shown to cause liver problems (and we’re talking only 1 case ever) is, of course, his anti-vomiting medication. Now, he’s been on it long enough that it should have been problematic before, but we did just increase his dose recently. As you can probably guess, stopping this medication to help his liver will likely bring the vomiting back big time, which will likely necessitate being readmitted in order to prevent dehydration. Keegan’s heart is extremely sensitive to dehydration or fluid overload, and the doctors would have to monitor him closely.
So, after this nerve-wrecking meeting with his GI doctor and transplant cardiologist, we grabbed a cab back to the apartment. We had just gotten out of the cab when Keegan started throwing up again. At least he didn’t throw up IN the cab! From the scene on the street and the amount we vented out of his g-tube, it was obvious Keegan hadn’t processed much of anything since around lunch. The doctor said to stop his feeds again until tonight. We should hear back about his afternoon set of labs before 9pm tonight about what the plan will be regarding his anti-vomiting medication. Our GI doc did say that if Keegan throws up even once more the “plan will have to be reevaluated”.
Needless to say, we would really appreciate your prayers for Keegan’s health tonight. He also had a scary little episode after the vomiting incident where he was shaking pretty good. We don’t think it was anything serious, but until we’re sure, please continue to pray. We were already planning our weekend excursions and would really like to be able to spend this time exploring Boston as a family. Thanks again for your prayers. We’ll update with some more pictures of the Green Monster soon!