Yesterday was kind of a rough day. Joel had a few hours when he did really well, and then a period where even though his tylenol should have just kicked in he seemed like he was in pain and very frustrated. When this happened he would only calm down if Ryan would stand up while holding him. We decided to give him morphine and then realized we had left it in San Francisco, in the hour we waited for hospice to get us new morphine we decided to put Joel in his stroller and take him for a walk. The walk perked him up completely and he no longer seemed to be in any pain or have any frustration. It’s hard to know when he hurts or when he’s just bored or annoyed since he can’t tell us.
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We started doing anti-nausea medicine before his feeds since he wasn’t tolerating them well. The first two went great and I thought we had a good solution, but his third one, an hour and a half after a new dose of anti-nausea medicine resulted in vomiting. Since the muscles Joel uses to swallow don’t work well he doesn’t vomit well either, he coughs and formula comes dripping out his nose and he gurgles and chokes, and it is really terrible. It seems pretty unsafe for him to vomit like this we since it is likely he is having vomit come up into his throat and then down into his lungs. Today we are going to try to do three feeds that are just half the size of his normal feeds and see how he tolerates them. If this doesn’t work I suspect we’ll begin a conversation about iv nutrition.
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It is hard being so unsure of what Joel needs, and when to take the next steps. I suspect when we’ve been home a little longer and working with his hospice care team more we’ll feel more confident about how we take care of him. We are about to take him to children’s hospital to have his last appointment there, and see if they can get his port working again. We will also ask them a lot of our more pressing questions about his pain and his feeds.

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