Job wasn't very cooperative and for what seemed to be the first time in his life, he wasn't interested in eating. We didn't feel like we got a fair assessment of his swallow, but he did aspirate while drinking thin liquids (his regular milk). He did fine with his puree and with the thickened milk because he can't swallow these as quickly so it gives him time to protect his airway.
It sounds like it was already the plan to put Job on thickened liquids because of his oxygen dependency but catching an aspiration on video didn't do him any favors. Well, that sounds like being on thickened liquids is a bad thing. It's not, or at least, aspirating is a really, really bad thing so it's not a bad thing comparatively. It's just that thickening his milk is yet another really time consuming and, well, annoying thing to add to Job's care.
I also enrolled Job in another research study and had to sign consents and do a blood draw for that. This study is looking at that elusive "hepatic function" so they'll do another draw two months after the AV fistula and compare results.
And Job had a three hour ultrasound of his upper extremities to assess his veins and arteries in preparation for his next surgery. Both right and left side are patent! (There's good blood flow.) Yay!
And we also had a consult with the PT we have seen inpatient. She has primarily helped with Job's swallow and has directed much of his feeding plan.
It was a really long day and I'm feeling exhausted and a bit discouraged and overwhelmed with where Job's at overall. We just keep adding to our list of complications. That his left vocal cord and epiglottis are still causing him such difficulty with something like swallowing?!? It seems never-ending.
This photo shows the bottle at the left and the black liquid in the bottle is the barium-milk, being swallowed.
No comments:
Post a Comment