Happy with Hershey

Well, this weekend didn't go as we had planned. On Thursday Raymond was feeling less then par. He ended up having several seizures, one of which his physical therapist witnessed. I took Raymond to Hershey Medical Center's Emergency Room. (Our local hospitals are not equipped to handle Raymond's medical conditions.) He was admitted and the doctors were struggling to find out what was going on with his little body. Raymond's oxygen level was very low and he had to be put on 3 liters of oxygen and his saturation level was only around 80%. For those who aren't familiar with that jargon, it's not good.

The neurologist ordered an EEG and was hopeful he could catch one of these seizure episodes. The EEG was horrible. Raymond was so upset when the nurses were putting the probes on his head. I held his arms and body down while they tried to work as fast as they could. It took almost an hour to get all the probes on and then they were slipping off as the test was running. The reading was not good enough to see any unusual activity. Another EEG was ordered on Saturday and it went about the same. We were getting a little frustrated because none of the nurses or doctors had seen the seizures. Raymond would have one and we would push the call button but by the time they were able to get to his room it would be over. Finally I pulled out my camera and set it to record to see if we could film one. We did! I showed the neurologist the video and he was very happy we were able to catch it.

He initially thought Raymond might have Epilepsy because of the frequency of the seizures. Once examining the video (with 7 medical students) he realized that these were not epileptic seizures. The seizures that Raymond is having are very uncommon in children. The neurologist explained to me that they are normally seen in older adults. The pattern in which Raymond is having the seizures is also very unusual. Dr. A. said that there is exceptions to every rule and Raymond is definitely one of them. Hasn't he always been!

Then we discussed medicine. I HATE that Raymond has to be on long-term medicine (I would hate it for any of our children) but I know he needs it. I just don't like the idea of being dependent on something. This will make Raymond's quality of life better and that's what is so important. Hopefully down the road he will outgrow the seizures and we will be able to wean him off the medication. Finding a medication was also a trick. The first medication that was suggested required frequent blood tests because it tends to effect the liver. However, that means it will also effect his white blood count. Because of the leukemia, we can't have anything that will effect the white blood count. Raymond's neurologist would never be sure if the white count was being effected by the medicine or the leukemia. Two other medications were out because of his heart condition, one because of the lung disease and yet another because it only came in a chewable tablet. So after filtering through those 5, Dr. A. suggested Keppra. It's an anti-seizure medication that is normally given to teens and adults. It is however safe for babies and young children in small doses. The side effect of Keppra, in a child's Raymond age, is severe irritability. Dr. A. said the medication takes about 3 days to take effect and that by the end of the week if Raymond is experiencing the side effects he will act like a totally different child. Raymond has been a little more irritable but he has four teeth coming in. Since he's not irritable all the time I'm going to assume that it's from his poor little sore mouth and not the medicine. I'll be keeping a very close eye on it however. I asked the neurologist if he will find out why Raymond is having seizures. Dr. A. told me that I don't want him to find out. I was intrigued. Why? He stated that if he does an MRI and can physically point to something in Raymond's brain causing the seizures, then that means one of to things. Either that Raymond will have seizures the rest of his life or that he would need brain surgery. Neither of which we want. The best case scenario it that we never find out why. Then the "reason" for the seizures will be a miss-firing of the brain. In other words, Raymond's brain is sending his body mixed signals, which is causing these episodes. This is something he could possibly outgrow. The doctor does want an MRI done but in order to do so Raymond needs to be sedated. With his current unstable oxygen level, that would not a safe procedure. As soon as we get his oxygen saturation more consistent, then we can go forth with the MRI. The current thought process behind Raymond's oxygen troubles is that the seizures are putting strain on his already weak heart. The extra strain on the heart is putting extra strain on his fragile lungs. What a tough guy!

Raymond was in the hospital 5 days and was very happy to come home. He really wanted to roll all over the place at the hospital and was stuck in a little metal crib. Now at home, we have an entire other set of worrisome issues. Since Raymond is rolling all over the place, he keeps getting himself all wrapped up in the oxygen tube. (For those who might not know, Raymond was on continuous oxygen for the first 14 months of his life.) We have to watch him like hawks because it wraps around his neck tightly and very quickly. We also worry about him at night. He doesn't move much at night but enough that he gets very tangled. Raymond does have a monitor to check his heart rate and oxygen level which will alarm if the tubing would cut off his oxygen supply. Even so, I would still like to avoid that!

I bought a small magnetic dry erase board for on the refrigerator to keep track of the times I am giving Raymond his medication. He is currently on four medications all of which have to be given in specific increments of time. I was afraid I would forget what time I gave him which medicine. The dry erase board has been very helpful. I've also started to make a list on it of supplies I need to order for him.

The reason the post is titled "Happy with Hershey" is that we are trying to transition all of Raymond's medical care from St. Christopher's to Hershey Medical Center. We really like Raymond's doctor's at St. Chris but the rest of the staff leaves much to be desired. Actually, they leave a whole lot to be desired! We were very happy with all the staff and doctor's we met at Hershey. I think we will be keeping Dr. Halligan (oncology) at St. Chris. He has been with Raymond since he was four days old and has always been such a comfort to us.

Isabella and I stayed at the Ronald McDonald House in Hershey. It was the first time I had even been at this RMH. Construction was just finished on an addition to the house an it was very nice. Isabella loved the fact that it had a Hershey Chocolate World theme. The bedspread had Hershey Kisses on it which was a sure highlight for her. Isabella also LOVED that when we went outside it smelled like chocolate. She kept saying, "Mommy, it smells so good here!"

With all these new revelations, Raymond is doing so well! He really is in much better spirits and goes on with his day as usual. He's spending a lot of time on his hands and knees so hopefully he'll start to crawl soon. The second he does we need to put up the gates! He's so fast now just rolling that I can't imagine how he will zoom around here once he realizes that crawling is a much faster means of transportation...and walking...that makes me break a sweat just thinking about it! We have awhile to go before that will happen though. It will no doubt take place the same time his baby sister walks. Raymond will go one way and she will go the other. Maybe I should learn to roller blade in the mean time?

Until Next Time!

Lots of Love,

Erica