Need a Smile

So I learned my lesson. Never assume that everything is getting better. Last week Oliver was super happy and even laughed a few times. John and I were marveling at how we had finally reached a new "normal" way of life. Last Monday we headed up north to my grandparents to finally celebrate Christmas. Oliver woke up in the middle of the night the first night we were there. He was frantic, throwing up, and just a mess. I don't know that I have ever seen him in so much pain. We decided to come back to the cities just in case this did not pass. The last thing we were about to do was take Oliver to some podunk hospital and try to explain what he has to them. This is why we stay close to Children's. We got home and Wednesday AM he was still miserable and was starting to do little staring spells. Called our doc and she said get into the hospital ASAP. Got to the ER and they figured he was dehydrated but other than that, special kids are hard to figure out (his tummy x-ray was normal). We were told we could go home after we made sure he tolerated food in his tube. I was lying next to Oliver and he did the staring thing right as the doctor came in. I said, "Quick!! Look at this." She said, "You are staying." Oliver was having seizures about every 45 minutes for who knows how long before we got to the hospital. They lasted for about 2-3 minutes each. He slept for about 36 hours straight, seizures make you tired. So again Saturday we were about to leave. Oliver was still not feeling well, but nobody could figure it out. Finally our neurologist came, he had been out of town so we were seeing a few different neuro docs. Our doctor knows Oliver and told us we were staying until we figured this out. So, throughout the course of our hospital stay Oliver had the following tests. 2 tummy x-rays, ultrasound of abdomen, 1 chest x-ray, EEG, EKG(his blood pressure dropped so low at one point we had 4 docs and a few nurses in our room in just a few seconds), blood and urine tests, CT scan of his pelvis, abdomen, and chest, and brain MRI. Whew.. did I mention it took 9 tries to get an IV started? Two anesthesiologists tried, finally using ultrasound to get it started. From this, we learned his brain is the same, it has not grown at all meaning his brain is so underdeveloped and not gonna change, but it has not gotten worse. Abdomen looks fine, he has some lung issues. We are not 100% but it most likely is from when Oliver was seizing and throwing up, he sucked a bunch of fluid in his lungs. It is not pneumonia yet, but we are treating it because they are worried it is headed there (the doc called it pneumonitis). Because Oliver's seizures make him aspirate, which he is already prone to do, we cannot feed him with a bottle, only through the tube. In a few days we will repeat the swallow study to see if he will be able to feed with a bottle again. We will repeat the chest X-ray in 2 weeks to see if his lung issues has resolved. Oliver did have another seizure last night. We are now playing the tricky game of figuring out the right dose of meds. He will have random seizures now and then and he has a 40% chance of developing the type of seizures where he would go into convulsions. This would be bad for Oliver because they apparently are very difficult to treat in kids like him. I got the feeling that it is just a matter of time. So that was the last five days. Oliver went from taking three meds to now being on seven. Two are only for a few weeks the rest are forever. I am physically and emotionally killed. Oliver has not smiled in almost a week and I need that again so badly. He just seems so sad and miserable and it is breaking me to see him this way. It is times like this when I feel so guilty.
We were getting his medications today at the pharmacy and I told Adina that we need to give it to Oliver so he does not have anymore seizures. She said, "Ummmmmm, mommy I looove Cheesers!!" Thank God for moments like that.
Now a busy week of follow up appointment and moving downstairs to our three bedroom apartment.
Nite all...