Words from Jill:
This is our 5th Tuesday in the hospital!! Our 29th day. Amazing! While part of me feels like it was yesterday, a lot of me feels like this has been forever!
Last night was a rough one for Matthew. He hasn't been sleeping very much. One of the medication's side effects is insomnia. At 2am, he finally quieted and slept. His O2 stat's dropped to the low 80's. As the nurses came in, I opened his eyelids, and his pupils were pinpoint. When it is dark (like when your eyes are closed) your pupils should be bigger and should react to light. His were so small, they only were able to react a little bit. That scared the nurse, and she tried to wake Matthew up. He was virtually unresponsive. He would only flinch when you rubbed your knuckles across his chest. He didn't even wake up. He was this way for 30 minutes. They called the doctor and he didn't want to load him, but just watch him. It was scary, because while he wasn't looking like he was having a seizure, they thought he was having a seizure. At around 25 minutes, I heard his breathing deepen, and I turned the light on, and said "Hi, Matthew!!", and he opened his eyes and smiled at me! Unbelievable! Scary for me, and the nurses, too! He did this two more times through out the night, so it wasn't a very restful night.
This morning the doctor, nurses and dietitian made a last minute decision that they wanted Matthew a little more healthy than where he is right now before they start the diet. While I was disappointed, I understood. They just want Matthew to succeed. We still did all the teaching today, and I learned a ton! I have a lot of information to process; but we are ready to go when Matthew shows us he is ready.
This afternoon, Dr. F decided it was best to hook Matthew back up to EEG for a bit to see if we can catch these 'episodes' where Matthew was unresponsive. Right on cue, as soon as the leads were hooked up, he did it. FOR 35 MINUTES. We had 4 nurses, the floor manager and the PA in the room. Everyone was bustling around his little crib, trying to wake him up. They called the doctor and he watched the EEG. He said, get this.....it WASN'T a seizure!! He thinks he is getting so little sleep, that when he is asleep he just goes into a very deep sleep, and since he still has some residual pneumonia that that is why his sats drop a little bit. I was so thankful. I was wondering how I was going to know if he is having a seizure in the middle of the night when I'm asleep. So GLAD for so many reasons!! So good deal, we just have to get this pneumonia under control a bit more and then we are go for takeoff (of the keto diet!)
Seizure wise he is having only "simple partial seizures" now. Simple means he is still alert and partial meaning one-sided. Dr. Frost doesn't want to increase his medications for these. He is the most coherent we've seen him. It's nice to see a bit of my baby coming back. Tonight I think I can say, that we may be on the upswing of things. Praise Jesus!!
Please pray for Thomas' family tonight. I've told you about them in the past, we met his family in the PICU. He went to sleep in Jesus this afternoon. Pray for this grieving family. Also, I just found out that a classmate of mine from highschool (PVA...I went there my junior year) lost his wife today from a sudden heart problem. I also went to school with her, and she has three small children. Pray for this sweet family too! There are so many hurting!!