This sounds good Barb! I am so glad Ryan is improving! and an added bonus Chuck is being a good dad! and not a bad ex lol Hope Ryguy improves more and more every day, we are still praying and thinking of you guys xx
Be Happy for this Moment, This Moment is your Life
Ryan is coming home! I got a text from Chuck around noon - telling me they wanted to send him home. Ummm - I had just got off the phone with the hospital - they were hoping to keep in in ICU another day or 2 then to the ward till he was ready. So I called again. Seems the drs thought he would be better coming home because of all the viruses going around on the ward. Whoa - no services in place. The ICU staff did not feel he was ready. Neither did I. So I talked to the dr and he gave me till noon tommorrow. So - a bit shocking but ok. I guess this is ok. It will be scary for me - that's for sure.
So he is off all oxygen and breathing fine. No seizures. No vomitting. Colour good. pulse good. Still very sleepy and weak.
No idea why this all happened. One theory I have is that the pharmacy ran out of his pills and substituted a generic brand - that is a fact. The other is - flu shot. He had just had his flu shot when the seizures started up again.
But no one knows. i want to talk to the neurologist about this. But no drs are saying much. Figures. Dump it all on me.
The nursing agency is scrambling to get help back in place and we made need some extra support. Or else I'll be sleeping in his room with one eye open all night.
Hmmmmm....both are definite possibilities, Barb. Generics sometimes aren't absorbed as well (differences in fillers and the like) so you might end up with a lower level of the meds in the blood (plus counterfeit drugs are a problem occasionally). Were they able to measure his blood levels of his meds when he came in? Were they low?
Flu shot is another possibility - while adverse effects are rare, any vaccine can have a low rate of reaction - usually accompanied by fever. If he didn't have any fever, it's also possible for the flu shot to ramp up immunity in general - including any autoimmune antibodies? Have they ever thought that autoimmunity could be an issue?
(Also - FWIW for others out there - people with celiac disease who are sensitive to gluten, may have problems when switched to a drug that contains gluten in the filler).
He did have low tegretol levels and that was the drug that was substituted. As for the flu shot - he did come in with a slight fever so it is another possibility. Truth is - they haven't discussed how it happened so much as how to treat it. I really want to spend some time discussing how to prevent anything like this happening again. Thanks for the info!
Could be the combination of the two, then - the low tegretol levels from the generic, then a mild flu shot reaction lowered his seizure threshold. Either one alone might have been okay, but the two together - double whammy.
I left a similar note at our Pharmacy last week. I am livid about it...
But I'm also relieved to see Ryan becoming himself once more. Morphine and Versad had really wiped him out.
I'm feeling very emotional. Almost everything is making me close to tears today. I guess I had held it together so long - now it is close to the surface.
Today I arrived at hospital and told every doctor, nurse and coordinator that I wanted one more day. That Ryan hasn't even gotten out of bed in 2 weeks. I want Physio done on him. So they went for it (but made me promise NO MORE EXTENSIONS!). Ok ok...
Ryan was awake. Grabbing my arms. Trying to pull himself up. Feisty. Spirited. Determined. Stubborn. Expressive - that's my guy!
I remember 26 years ago when he lay in ICU for weeks on end and I prayed for a miracle. Sometimes out loud. And the doctors told me that miracles DO happen. But that they usually don't happen overnight. And I reminded myself of this over the past 14 days as I agonized day and night. What if he never got better? How would I ever cope??? But the little miracles started happening. One teensy baby step at a time.
This was a horrible event for me. I embrace bringing him home tomorrow. I will then be ready to leave the safety of the ICU. Today there were no sedatives, IV or central lines, no airways, no needles, no alarms, no monitors. Everyone was smiling at me. Everyone is happy for me. And I just want to give thanks to God over and over again.
And thanks to each of you for your words of comfort and support.
