End of December hospitalization

Thursday, 3pm

We're home! He's actually showing more cold symptoms now rather than when he was in the hospital - a snotty nose and just more tired. It's hard to say if his cough truly changed because he always coughs and it always sounds a little wet.

After playing (and getting tired) with his brothers, he really wanted to put together his Lego set he got for Christmas. Yay for being home!

Wednesday, 12pm

Job didn't need oxygen through the night! Woo hoo! That bodes well for discharge. He's extremely grumpy today and everything is frustrating him (which is actually probably a sign he's feeling better). I've been trying to order him different foods for variety as well as to expand his palate and today's "new food" was a cinnamon roll. He loved it and asked for a second for lunch as well. He's also been devouring box after box of strawberries.

Tuesday, 3pm

Pulmonology came by yesterday just as Job was finishing some food and he coughed while he was eating. I wasn't concerned because he always has a baseline cough, but they were concerned that even solid foods were unsafe for Job. Speech came by to assess Job while eating solid food and he "passed". Plus we have three VFSS (swallow studies) in the past 5 weeks showing him to safely swallow purees and solid foods. I appreciate their attentiveness but I also can't imagine taking away foods by mouth from Job, so I'm relieved Speech doesn't see the need to do so.

Job needed oxygen during the night so we almost certainly earned ourselves another night's stay but Pulmonology thinks he has sleep apnea and might actually be desatting every night so we might just need to go on at-night oxygen for the next couple months until he has his sleep study and CT scan and Pulm clinic follow ups.

He got a new toy and we're rewatching The Secret Life of Pets 2 yet again so he's relatively content. He's only asking if we have our [discharge] papers once an hour instead of every five minutes, so I do think that's telling that he's not feeling all the way better. He's still not showing any obvious signs of a cold.

Monday, 5pm

Pulmonology came by and spent a lot of time reviewing Job's medical history and then talking through options. Then they came by again and suggested a "long term" plan which sounds pretty good - maybe even just because it's a plan! I've been wanting more of a plan than "we'll just have to see" but it's not entirely Transplant's wheel house to make such an elaborate feeding/breathing plan as it is in Pulmonology's (and it's definitely not Otolaryngology's "thing" as I've realized the last two months). Transplant did ask for a Pulm consult a few weeks ago but we were waiting for an outpatient opening. Honestly, I've been dreading talking to Pulm because I knew they were going to strongly suggest a g-tube. But these last weeks have been hard enough that I'm slowly warming up to the idea of a g-tube.

We didn't have enough time to pack carefully yesterday so we just brought all his Paw Patrol toys, whereas usually he only gets to bring one or two. But still, after 24 hours of sitting in a hospital bed with "only" Paw Patrol toys Job was really excited to get a little plastic toy truck to build.

Monday, 1pm

Rounds were "boring" (which is a good thing). Is this a cold or is this aspiration? His chest x-rays are inconclusive, but his BNP was stable (indicating he's indeed not having an episode of rejection), he's ordered for an IV dose of iron. His tube was pulled back and he got another x-ray and then it still needed pulled back even more to get it to a more comfortable place in his stomach. So lots of "poking and prodding" which he hasn't appreciated. He's low energy so he's not asking to go home every ten minutes; just every hour.

Monday, 8am

Job spiked a slight fever in the middle of the night (quickly brought down with Tylenol) so perhaps this really is a virus (a virus complicated by aspiration). Rounds aren't for a few hours but I asked for a Pulm consult as well. Job did well off oxygen last night for about an hour but they put him back on it for the night just to give him that boost. I expect the plan for the day will just be to wean off oxygen. The new NG tube that was placed last night was actually placed too deep (in his duodenum - part of the small intestine, which doesn't expand to accomodate a bolus of liquid) so it needs pulled back before he can start feeds.

Sunday, 7pm

We're finally up in our room on the 6th floor. Job got a new NG placed down in the ED. Though he was satting well upon our initial assessment, as they were placing his new tube and an IV he got more and more upset and desatted. I think they're just not interested in playing around with his oxygen requirements in the ED.

He did test positive for rhino virus - just a common cold (but negative for COVID) - but he's not really showing symptoms of a cold so it could be that the test is just so sensitive it picked up on lingering rhino particles from an earlier asymptomatic/mild cold. But did he really aspirate so much that it caused such respiratory distress? Maybe it's both.

Sunday, 12pm

We're on our way to the ER for what we expect will be a several day inpatient stay.

We couldn't get his NG tube back in after he threw it up (for the second day in a row) last night but then he's had increasing work of breathing all morning.

The big boys were really really upset about this incident. They (and Ezra especially) have been (suspiciously) calm the last couple months as Job has been in and out of the hospital but they most decidedly were not calm about this realization that Job needed to be at the hospital. I think it was just more emergent and therefore more scary, but also a "final straw" so to speak after a rough few months. As always it's really hard to be divided between my hospital kid who is physically (and increasingly emotionally) hurting and my at-home kids who are emotionally hurting.