Thursday, September 18th, 2014
So we’ve already told everyone that Dad has what is called GBS, I’ll go into a little more details about what this means and what his prognosis is.
All cases of GBS are different, some are more mild and people experience just a numbness and tingling in their hands and feet and others are more severe, like our Dads where everything is affected including the muscles that help him breathe, (this is why he is on a ventilator) This has caused total paralysis. The immune system attacks its own nervous system causing demylenation of the myelin sheith, which is just a fancy way of saying when your brain tells something to move, electrical impulses from your brain travel to that area of your body through the neurons, myelin sheiths are the outside layer. So in a nut shell because his are damaged at this time, when his brain says move, nothing does.
Hope that makes a little since, and if anyone understands this differently, feel free to chime in. I may have explained it a little wrong.
So before they knew what he had, he was having difficulty breathing, one of his lungs collapsed, and he was transferred from the med surg floor to the ICU and placed on a ventilator. He had an oral ventilator for about 1 week then they switched it to a trach, (in the neck) 5 days ago. While he was on the oral ventilator they had him sedated because all the tubes go down his throat, and as you can imagine caused a big gag reflex. Oral Vents also can cause vocal cord damage so they don’t like them that way if it looks like they’ll need the vent for long periods of time. During this time, dad was pretty sedated but would open his eyes when you came in and told him you were there, the day before he got the trach, he was squeezing hands once for yes and twice for no, he would move his arms and legs just a little, so we were happy about that.
After the trach was placed Dad has been pretty unresponsive ever since, when Physical Therapy comes into work with him he can’t do much of what they ask him. He hasn’t even been able to open his eyes much since then, and I mean maybe he’ll open them once a day for about 2 seconds, and that is it, most of him movement is twitching limbs. I myself was worried that maybe he has had some brain damage from the swelling that was on his brain.
Last night out of frustration and lack of knowledge about what is going on I looked into a GBS support group. Which I firmly believe I was guided there by angels above! I commented on what my dad was going through and went to bed really frustrated. The following morning I woke up to 7 people who have had GBS or family members who have, who all told me that complete paralysis was totally normal for them, including eyes and eyelids, most people were in this phase for 2-3 weeks, this was such a relief for me! All said they were totally aware of what was going on, and their family members thought they were in a coma, but they just couldn’t move anything to let them know that they were there.
One thing one women mentioned was how hot she was, she said, “He may be very sensitive to heat. I was and still am. In order to sleep I have to have a fan blowing directly on me. I remember that once I could let people know I was hot and they started the fan along with cool wash clothes on my forehead it was heaven!” Dad has been dripping in sweat the last week or so, we thought he was fevering, so this morning mom went armed to the hospital with a squirt bottle to spray him down, and placed wash clothes on his head. Ya go mom!
The other big thing was pain control, all of them stated how bad the pain was, here’s what someone said about her pain, “One thing to know is that pain management is so very important. I was in excruciating pain and couldn't let anyone know. Please make sure you are advocating constantly for your dad to make sure his pain is managed.” This was such an awakening for me, Dad hasn’t been getting anything for pain since the trach because they didn’t want him more “groggy” and wanted him to “Wake up”, His blood pressure rises during Physical therapy and he grimaces when they move him, What a blessing it is to know, so we can get him the pain medication he has been needing.
Lastly Dads case has been a little different than normal GBS, he has had an elevated WBC ( white blood cell ) count which I guess isn’t normal with GBS, we now think that he has what is called Bickerstaff Brainstem Encephalitis, I am not super familiar with it, but it is really similar to GBS and recovery is similar, (months to years) depending on the case, they are starting Plasma exchanges (plasma cleaning I guess, like dialysis) over the next 5 days, then he will be transferred to a rehab facility in Provo where he's in for the long haul, relearning to do all the things that we take for granted on a daily basis.
Well this is pretty much all, We have had wonderful friends, family and neighbors who have kept us in their prayers, thank you so much, we have felt them!! I Truly feel that your prayers have guided us find what we needed to do to help him! Waking up this morning to all those messages brought tears to my eyes, what an answer to prayers!! Thank you!!