Well what a week ! It was a huge roller coaster of emotions that is for sure. We went into the hospital on Monday and it wasn't a great start to the week. Soon as we got there nobody seemed to know where to send us or what was going on. It was very frustrating as we sat just waiting for almost an hour to find out where we were going. Finally we get up to his room and start to settle in, then we went downstairs to get the EEG wires hooked up to Quinn's head. Then back upstairs to our room and we had to wait to get Quinn hooked up to the EEG equipment. Once hooked up he was confined to his bed for a day an half. We had to sleep the night with all the lights on in the bedroom because this EEG was monitored by video. Nothing like being watched for a day and half haha.. made sure to do no nose picking or wedgie picking. Quinn cried most of the night because the wires were digging into his head and hurting. So I got about 2 hours sleep combined over 2 days so I was feeling quite drained. Quinn kept asking for pizza and pizza and I had to keep explaining there was no pizza coming. He instead had to drink with a straw this gross Ketocal shake, just the smell was enough to make me gag ! The poor boy managed to get 3 shakes down that day. Tues came around and blood work started at 630am, they took 7 tubes that morning. His first *meal* also arrived with was a cold rubbery half egg hard boiled, spoon of marg, spoon of mayo, some liquid whipping cream and a couple little carrots. He ate the egg and started eating a carrot and the throwing up began and the refusing of meds. I couldn't blame the poor boy , his food was disgusting an they can't prepare it different at the hospital because they are very limited with what they can do. So he didn't eat anything all day, we finally got him to drink a bit of shake that night which stayed down. Then Wednesday he starting throwing everything up again and refusing meds and food. So we had to go the tube route.... this was horrifying. Poor boy ! BUT he is such a brave little man and rarely cries. He just did a lot of whimpering and kicking while they had to pin him and put the tube down. He also had to have his blood sugar tested every 2 hours since Tues., so his poor fingers were quite beat up. Wednesday they did more blood work and took 3 tubes this time. We met with the genetics team on Tues evening and gave them all the details they wanted. So it will be about a month before we hear from them again. Our ped neuro told me on Tues he thinks it looks like progressive myoclonic epilepsy which isn't good news but I am not thinking about that right now since I live hour by hour and day by day. Because if I think of the future and what may happen I lose it ! More testing will be done and he also is considering doing a skin biopsy on Quinn an he would need to be sedated again for that. Wednesday a specialist in eyes came to look behind Quinn's eyes to see if there was damage done from the seizures or if this is a concern. The good news is for now Quinn's eye sight is perfect and healthy ! On Wednesday we also go moved out of the private room into a shared room with a 10 year old boy with Cystic Fibrosis. Quinn also got moved into a closed off crib so he wouldn't fall out and hit his head on the concrete with a seizure. This made it easier for me because I could actually leave for 5 mins to go pee or get a nurse to come check something out.
Will continue in another post...
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