Being on a paralytic as well as all of the medications, I was truly unaware of everything going on around me. I'm told that it is a very good thing that I don't remember. Towards the end of week 4, I began to move back into the conscious world though I was still in a drug induced world as well. The memories I have of this time are extreme and disturbing but we will get to that later.
At the very end of the week, we were hit with another curveball. I developed ADEM which is Acute Disseminated Enchephamylitis. Basically being the over achiever that I am, my body (by mistake) attacked the white matter of my brain while fighting the ARDS. I guess there are times when eing a perfectionist can get you into trouble!
Sun, 25 Oct 2009 19:32:57 -0500
They’re weaning Heather’s O2 pressure (PEEP) down along with the sedative. When I walked in this morning, her PEEP was at 8 and her blood oxygen level was at 99% which is absolutely amazing. Her fever is gone and they plan on trying to see if she can breathe by herself tomorrow if they can get the PEEP to 5. (it was at 6 when I left tonight) If she can breathe ok, they’ll remove the vent. If not, they’ll do a tracheotomy and add a trach tube, which will be much more comfortable for her. She’s still weak muscularly due to the steroids and the paralytic but she’s able to recognize us when we’re there.
Mike
Mon, 26 Oct 2009 17:56:46 -0500
Due to the paralytic drugs combined with the steroids the doctors had to give Heather to save her life, she’s still unable to move as much as the doctors would like. Her O2 levels are near normal breathing (40% O2 and a PEEP of 5) but they feel it’d be better to give her a tracheotomy rather than just pulling the breathing tube out at this point. This is pretty normal for patients who’ve been on a vent for this long. They’ll do the procedure tomorrow at 11:00am. She’ll have to have it in for at least a week…so we expect her to be in ICU for at least another week. She can have visitors, so any of you who’d like to visit and sit with her, please send me an email and we can arrange a time.
Thanks,
Mike
Tue, 27 Oct 2009 21:51:53 -0500
Heather’s Tracheostomy went well today. I left around 3:00pm but she looked much more comfortable as compared to when she had the tube down her throat. She was still coming off the anesthesia so she’s wasn’t as lucid as I would have hoped. I’ll be there in the morning to see how she’s doing but from what I can tell, it’ll make a world of difference to getting her off the vent. The doctor mentioned he expects her to be off the vent in a week.
Fri, 30 Oct 2009 06:01:40 -0500
Sorry it’s been a couple of days since I sent updates. Between work, spending time at the hospital and trying to sleep…I’ve been pretty busy.
Yesterday was an awesome day. Heather seemed to suddenly “wake up”! When I walked in, I thought I’d hear a doctor to tell me she’d had some sort of brain injury as a result of saving her life and that she’d not ever be the same. When I walked in, there wasn’t a nurse right at her bedside so I just walked in. She was looking straight at me. I asked her to blink her eyes a few times if she understood me. I told her I loved her and blew her a kiss. She blew one back! The nurse came by and said that they’d been working on range of motion and that she’d gotten Heather to stick out her tongue if she were in pain and that she’d been able to weakly squeeze both hands. Brandy came by and spent the afternoon with her. She and the nurse took care of her skin and put her hair in pigtails. The Neurologists came by a little later and ordered an MRI which they did last night. (No results yet) Hopefully all will be well but yesterday was a major improvement. You can’t imagine how it feels to kiss your wife after 3 weeks of missing her!
Mike
Sat, 31 Oct 2009 06:26:36 -0500
Heather is more and more alert but still has trouble moving her fingers and toes. The doctors did an MRI yesterday and explained that she has Acute Disseminated Encephalomyelitis, which I’ll not try to explain in detail here. Please visit this page for more information: http://www.ninds.nih.gov/disorders/acute_encephalomyelitis/acute_encephalomyelitis.htm
They’ll start intravenous immunoglobulin therapy today for four days in hopes it will arrest the disease. She’s in great spirits and could use visitors. I also could use help during the week for anyone who can sit with her while I work. This can be a couple of hours, but it’s been almost 4 weeks now and I have to get back to work in order to make sure we keep a house over our head. If you’d like to visit or help out, please email me and we’ll arrange times.
Thanks,
Mike
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