Back to everyday

I had a post earlier about our inpatient stay. I hadn’t posted that before we went. I thought I might even get around to posting while we were inpatient. But that didn’t happen.

This go round of DHE was quite an ordeal.

The infusion works best if Nausea is controlled while your on it. One of the side effects is severe nausea. So when Chewy escalated to 7 out of ten on the barf scale.. Similar to the Pain scale.. only with Vomit.

Being that they try to control his nausea, he is on two anti-emetics to begin with. But having jettisoned to a 7 out of 10, we had to move on to tier 3 of our protocol. We haven’t previously used tier 3. They didn’t warn us about the side effects of tier 3 prior to it being injected. Chewy promptly fell asleep.

About 2 hours into the tier 3 protocol Chewy wakes up with a gasp of air and clutching his arm that the IV was in. The IV hadn’t infiltrated. It was a side effect of the medication. It apparently can burn your vein. Which it had been.. for two hours. That med was promptly stopped and the IV pulled. Which was the beginning of a very long exhausting week.

Actually the Migraine with Nausea was.. But losing that IV made the rest of the week awful. He was sick and sedated all of Tuesday, day. So Tuesday night he was up a bit more.  Wednesday he was miserable because the new IV was in the back of his hand. Difficult to do anything with the placement of that. His comfort is playing guitar.. Which you can’t do with an IV moving around in the metacarpals and tendons in the back of your hand. He did eventually try, but that most likely contributed to eventually losing that IV also.

The backs of his hands have a lot of Valves in the veins. We know this from extensive daily intravenous infusions that we have done twice before. Although they did get one to work, it has it’s own issues. The fluid builds up then eventually pushes it’s way through. This leads to gradual but inevitable destruction or implosion of that site.

Add to that, that the DHE is a Vaso-constrictor. It makes it even harder to get into a vein. So by day three or four.. the veins are pretty much rejecting the IV intrusions. They have to scale down the needle size and risk slowing down the rate of infusion.  When we lost the IV in the back of the hand, they had to go to extremes to get another one in. Combine that with having been sick.. he was dehydrated, on a vaso-constrictor and they were looking for veins in weird places as the other sites had been corrupted already.

Site 3 ended up being on the inside of his right hand wrist. Did you just cringe? Me too.

Not only is he right handed.. but that made doing pretty much anything impossible to do. He was mad at this point. Nothing to do.. and miserable. Just needed to make one more day. Since site 2 blew in the middle of the night and it took almost 2 hours to get a new IV in place.. and the infusion had run late and the next started after the new IV was in place.. We hardly slept the time we were there.

Glad to leave and go home Friday.

But, as I had scheduled a 5k for Saturday months before we knew he was going in… there was no sleeping in..

When Monday rolled around, My brain was still in vacation mode. Mainly because it never had sleep. One day was not enough to let it reset.

This was quite possible the only week I really needed my brain too 🙂

Both kids starting college, at different local colleges and needing to figure out who, what, when and where.. But Mommy brain was on vacation. If anyone know how to Jump start the brain to get it back on track to handle the everyday.. I sure could use it. I need my everyday brain working again. I sure hope that everyone else’s Back to school isn’t as adventurous as ours.

This entry was posted in chronic illness, CVS, Cyclic Vomiting Syndrome, hospital, invisible illness, MIgraines and tagged , , , . Bookmark the permalink.

1 Response to Back to everyday

  1. Hi…I’m a CVS mommy. We have done DHE as well after suffering for three weeks trying to treat a migraine that wouldn’t stop at home. I feel your frustration as a parent. Good luck. We are inpatient right now. I started my blog today while in the ER … kneedeepinlove … Hope your child is feeling better. Mine has been home from school and very sick since Thanksgiving. Looking forward to spring when she usually starts feeling better. Again, good luck!

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