{"id":100,"date":"2026-05-24T19:47:05","date_gmt":"2026-05-24T19:47:05","guid":{"rendered":"https:\/\/cota.org\/cotafortimmy\/?p=100"},"modified":"2026-05-24T19:47:06","modified_gmt":"2026-05-24T19:47:06","slug":"watching-and-waiting-and-wishing-for-discharge","status":"publish","type":"post","link":"https:\/\/cota.org\/cotafortimmy\/2026\/05\/24\/watching-and-waiting-and-wishing-for-discharge\/","title":{"rendered":"Watching and waiting and wishing for discharge"},"content":{"rendered":"\n

Tomorrow marks three weeks since Tim was admitted to the hospital for his transplant surgery. Last week, doctors had started tossing around the possibility that he could be discharged that day. We started post-transplant education, medications were ordered and secured, and plans were set in motion to get Tim \u201chome\u201d and transitioned into outpatient care.<\/p>\n\n\n\n

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It looks like Memorial Day will be spent in the hospital this year, though. One of the anti-rejection meds he\u2019s on has a nasty side effect in some kids that causes a lot of GI upset. Of course, Tim fell into that group, so he\u2019s found himself not feeling the best and <\/em>back on maintenance fluids to combat dehydration. It\u2019s affected a lot of his lab results and tests, making it difficult to know what’s going on and why certain important levels might be off. <\/p>\n\n\n\n

One of those levels \u2013 creatinine, which is an important marker of kidney function \u2013 skyrocketed. In fact, it was back on par with what it was pre-transplant, which was definitely concerning. <\/p>\n\n\n\n

After a lot of back and forth and conversations with his doctors \u2013 which included fun phrases like \u201crejection\u201d and \u201cbiopsy over the weekend\u201d and \u201cpulse steroids\u201d \u2013 they think they\u2019ve narrowed it down to a couple of medication issues related to GI issues\/dehydration. In particular, one of the anti-rejection meds can be toxic to the kidneys if the level is too high.<\/p>\n\n\n\n

Relatively good news, all things considered. That\u2019s something that can be managed without a lot of added stress or more invasive procedures. Now, we\u2019re just waiting for Tim to feel better and watch his labs to hope we see a downward trend in creatinine with some medication adjustments.<\/p>\n\n\n\n

At the same time, we\u2019re watching markers to show that his FSGS is getting more under control and closer to remission.\u00a0He’s done with pheresis, and he had a special infusion on Friday to hopefully put him closer to where he needs to be.<\/p>\n\n\n\n

It\u2019s a lot. <\/p>\n\n\n\n

Plus, he\u2019d gotten his hopes up that there was a possible end in sight to this lengthy hospital stay. He took the news well and understood the circumstances, but was clearly disappointed. It\u2019s so difficult to watch him struggle with everything going on. He\u2019s trying \u2013 for me \u2013 but his smile isn\u2019t offered as freely, and his eyes are a window into the sadness and anger he\u2019s grappling with on the inside. It\u2019s heartbreaking.<\/p>\n\n\n\n

He\u2019s also not feeling the best physically because of a drain in his abdomen that\u2019s still there from surgery\u2026 so getting him to get up and move has been a challenge. He\u2019s spent a lot of time binging old TV shows (recent favorites have included The Magic School Bus, Scooby Doo, and the Snoopy Show), playing his Switch with me, playing board games, and listening to my dad read him stories.<\/p>\n\n\n\n

We walk down to a \u201csun room\u201d at the end of his floor to play I Spy, look at the cityscape, and talk whenever he\u2019s up to it. We\u2019ve worked on a Lego set some, but with an IV in his hand or arm, it\u2019s not his favorite pastime. He\u2019s even been on TV here at the hospital a few times \u2013 once for a segment called \u201cCall and Draw\u201d and twice for a gameshow called \u201cWhat\u2019s in the Box?\u201d They\u2019ve been very cool experiences that bring him little doses of genuine joy and a sense of normalcy.<\/p>\n\n\n\n

In fact, here’s Tim on What’s In the Box, in which he handily beats his opponent:<\/p>\n\n\n\n

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