Oral Aversions and Therapy

Job seems to continue to improve. Yay! He slept for an entire four hour stretch last night!?! Amazing!

He had a good therapy session today (something that we haven't been able to say for the last three weeks). I'm so thankful for the amazing therapists we have! Job lost quite a bit of ground this last month as he's been so sick, but for every two backward steps he takes we're going to keep pushing for a forward step now and then. A new concern that, likely because of tasting so much vomit for so long, Job has developed some oral aversions. This is yet another completely new issue for us to now navigate.

Possible Improvement?

We're surviving and maybe, just maybe, seeing improvement!

I think we're realizing that Frightful just isn't strong enough to make it through a cold or tooth coming in without great trial. It's sad and discouraging to realize this, as well as just plain hard to deal with practically speaking as he needs constant, intense care when so sick.

Sunday, Monday and today have each improved upon the day before so we're hopeful this trend continues and we could have a good weekend and early next week before his cath and hospitalization on the 8th.

It's nice to be back at a place where he can cope for 30ish minutes without being held so we can do things like quickly set up a Christmas tree and such. I'm scared something else will come up between now and his cath but I'm trying to choose hopefulness and trust instead of pessimism and anxiousness.

HLHS Explanation Video

https://youtu.be/gyMq0xhnVMU

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Miserable Again

I think this photo sums up the last two days well. Job is miserable again.

We had five wonderful days and now we're back to almost where we were 3 weeks ago in terms of his fussiness (though vomiting seems to be under control?).

Job is definitely teething but we can't think of anything else that has changed. Maybe he's operating on such slight reserve that even something like teething sends him over the edge of misery?

GI Clinic in Everett!

We got to go on our first family-of-five "adventure" (since The Vomitting began) on Thursday to Gastroenterology Clinic. It wasn't the most thrilling destination but it was really nice to be together and out of the house.

We're looking at a likely diagnosis of gastroparesis, which is where the stomach empties slowly. Too slowly. This, with his severe acid reflux, seems to be the primary reason for the vomitting, but teething and a cold haven't helped.

The two medications Job is on do seem to help (omeprazole as an acid neutralizer and reglan as a motility agent).



We have and will continue to investigate diet, but allergies don't seem to be the issue. Our next step would be an endoscopy if things don't improve in a month. We then also need to consider an NJ tube. I didn't realizing a feeding tube was even on the table and the very idea of moving so far backwards is crushing. (But, you know, so would be continued weight loss.)

We have learned how to manage his care in ways that seem to help, like giving 2oz of milk every 2 hours instead of 5oz every 3+ hours. Since he's both getting less milk and still vomiting we'll likely begin fortifying again for greater caloric density. His weight loss seems to have stopped but we have yet to see significant weight gain again.

We haven't even tried to wean off oxygen nor will we for a while. Likewise many of his therapy goals are on pause.

Job's cath is scheduled for December 8th. It will be at least one night inpatient and I think we're all expecting interventions, which might mean a longer hospital stay.

This isn't where we expected to be two months post-Glenn and it's been hard to realize that emotionally but it's been especially hard to just deal with practically. Harder even than when we had bigger cardiac issues, weirdly enough. But it seems like we're starting to emerge from the worst of it? We're at least in a brief respite and very grateful for it, especially because Job isn't so constantly miserable. He's even happy sometimes! Each day this week has been an improvement on the day before.

GI Issues?

Loonngg appointment today, including a full cardiology consult, an echo, a belly x-ray, full blood panel, and new meds.

We won't hear about the blood draw until tomorrow but everything else checked out ok.

It was gratifying to hear Job's team acknowledge that this isn't isn't right and to have them order such a full work up of tests, even though I would have preferred for them to tell me that I was being paranoid and impatient.

We're mostly sure that it's not heart related, and while we're hoping GI has answers (beginning in our Thursday appointment), we're now exploring liver and pancreas issues as possible culprits.

Job was surprisingly accommodating but of course sad.

Squeaky Wheel Gets an Appointment

Well, I guess I've been enough of a squeaky wheel that we're getting some grease.

Or, put more clearly, Job has a cardiology appointment in Seattle tomorrow morning.

I think (hope?) it's more to placate us than because his cardiologists are so worried, but I appreciate that they listen so well and are so happy to consider our concerns.

Over the last 3.5 weeks Job hasn't gone more than 30 hours without projectile vomiting. He is more consolable but still quite uncomfortable. We have a diagnosis of severe acid reflux, which has been compounded by a cold and by teething the past two weeks. We have a gastroenterology appointment on Thursday in Everett.

Job has had some ok days with some contentment and manageable fussiness and only one or two vomits, but never two in a row. He's eating less and I guess I'm worried about dehydration and just need reassurance that we're not missing something.