Well, we're in Omaha again. Last night as I was feeding Matthew before bedtime, he had a 5 minute long seizure. Really startled me. His lips had even turned blue for 30-45 seconds. As I was trying to decide which hospital to take him to and was visiting with the pediatrician on the phone, he had another one, not lasting quite as long though. So we quickly packed up and were off to St. Elizabeth's hospital. I noticed he a small one while we were on the way and then when I was trying to check him in, he started another one. The triage nurse just grabbed the infant carrier and wisked him off to room 1. Now room 1 will not mean much to many of you, but as a nurse at this hospital, I know that room 1 is reserved for the EMERGENT cases. All most all "code blues" that are called are in room1. That probably scared me more than anything. I think though, in retrospect, they just keep that room open for emergencies and he qualified. They proceded to check him in, weigh him, measure him, take blood and vitals. He had two more seizures during that time. Then the doc saw him and wanted an IV and a CT scan. Even though I was POSITIVE it wasn't his shunt, they have to rule that out. His fontenelle was not raised, he didn't have a fever, nothing!
Matthew is also a hard IV stick. The nurse tried once, even though I told them he's a hard stick. One of my favorite NICU nurses came down and tried with no avail. Finally, they called the anestesiologist and he got it after 2 pokes. Then off to CT. The CT was normal for him. His ventricles are still enlarged, but not bad for him. They then contacted his neurologist and ordered a large dose of phenobarbitol. The neurologist suggested sending him up to Children's but the ER doctor thought I'd be comfortable taking him home after the IV dose since I was a nurse. Well, he guessed wrong. I am SO glad I'm a nurse and have lots of knowledge to help care for him; but sometimes I just want to be a knowledgable MOMMY. The last time he recieved a phenobarbitol bolus, he had a episode where didn't want to breathe and dropped his temperature. I really didn't want to do that at home; only to call 911 and return to the hospital WITHOUT IV access that we had worked SO hard to get. He said that if I wasn't a nurse he wouldn't have thought about NOT sending me. Well, I said, in this case, don't treat me like a nurse, treat me like a mom. He immediately set up a transfer to childrens.
Today he has seen his neurologist, his neurosurgeon, the hospitalist and the resident. They have given him a couple more loading doses of phenobarbitol and he seems to be better seizure-wise. He is very tired though. There has only been one other time we have possibly seen seizure activity. They will be keeping us tonight again. We will have an EEG in the morning and Dr. Wright's(neuorologist) partner Dr. Oliver will see us. We will go from there. I'm hoping to get a bit of sleep as I was up almost 30hours straight yesterday/today without any rest. I was able to sleep some this morning/afternoon after Steve came.
I just want to say a quick, but heartfelt thank you to all who have called us, are praying for us or have emailed or left comments on the blog for us. Know that you are being instuments of the Lord as you are keeping my spirits up. We really are doing okay with this. We want to get this figured out for Matthew, though and get him on the road to developing and recovering.