Mike had been doing well all last week. Nathan left Friday for a 2 weeks vacation so of course I got nervous. Mike usually always winds up sick when Nathan goes away. On Saturday, Mike had about 6 or 7 "shaking incidents". I was concerned that they were "S's", but I had never seen any other kind than the grand mal, so I wasn't sure. Sunday he did well all day and Monday he was OK until he got up from his nap around 4pm. Courtney called me at work to tell me what was happening (heavy breathing). I left work and got home. Mike's face was beat red and he was burning up. His tempt was 101.4. I called his doctor and he told me to wait it out. By 8:30 Mike seemed to be having problems breathing, so I called the ambulette.
By the time we left for the hospital, it had occured to me that Mike had not had a BM in 5 days. At the ER they said that that can sometimes cause a fever. He was admitted again because of the fever and the fact that he had just had pneumonia. He had another "shaking episode" in the ER.
Once again I was exhausted from not sleeping for another night. We got to the hospital at 9:30 p.m. and I did not go home to shower and change until 10:30 a.m. the following morning. I was able to do that only because my mom and Walter came to sit with Mike and try to answer any doctor's questions. Another all nighter.......My brain was fried.
With yet more help from our friend Jean in Patient Relations, Mike was moved back to the room he had just left last week. It's a private room and allows me to have someone with Mike all the time. The issue with this hospitalization is that Nathan is away, so I had to be at the hospital all day. I left the house at 8:30 in the morning and got home at 8:45 tonight. Even if Nathan was around, I couldn't have had him go up the hospital because I can no longer afford to pay him. The last hospitalization cost me approx. $2,500 out of pocket, and that did me in (I write about this only to stress the fact of how this disease affects so many aspects of our life - especially the financial aspect. This kind of hardship is all too common).
Because I had mentioned the shaking incidents to Mike's neurologist, he ordered a 24 hour EEG. Mike was prepped and set up with a 24 hour video monitor. About one hour after the hook up, the respiratory person came in to give Mike his treatment (a nebulizer t help losen the phlegm). As soon as he started moving him, Mike had another incident. Both the resp. person and the nurse were in the room and they said it was most likely a "S". Twenty minutes later, he had another. Three hours later, yet another.
I really HATED leaving Mike tonight. Even though everyone says that people don't feel the "S", I feel bad that if he has one during the night, I will not be there to comfort him. The aide that works nights told me that Mike had 2 episodes like that last night. She wasn't sure what it was either.
So now the question is - what is causing these? The infection? The medication? The affect of the antibiotic on the anti-S medication? Is Mike dehydrated? Tired? Is this the disease taking over that area of the brain? I have no idea. His 24 hours of testing will end tomorrow afternoon and then the results will have to be reviewed. Friday is the 4th of July (looks like no BBQ for us this year) so I'm sure nothing will get done over the long weekend.
They also gave Mike an enema and he went to the bathroom. His white blood count was back to normal as was his fever.
As ALWAYS, what makes this so darn difficult is the fact that Mike can't speak. I am grasping for any signs of discomfort to explain something that may be going on. I had a meltdown in the hospital room this morning and the nurse came walking in. I didn't care, I am tired. I just want to know what's causing these S's and to know that Mike isn't in any pain.