Let's see, umm... well uh, now that I think of it there hasn't been all that much wonderful to report.
In the "general" news category, Zach has still had some issues. When he went a couple of weeks ago to be fitted for his brace, they removed his cast and discovered some really nasty skin ulcers on his back. They were in a spot that there was no way for us to see, so we have no idea how long they had been developing. Janine took Zach to Dr. Joffe who checked out the ulcers, and decided that they weren't too serious (they looked serious to me, but I'm a little less experienced than he is), and had us apply a disinfecting solution to them 3 times a day. (We're still doing this actually) He put Zach in a new cast with a hole in the back where the sores are so they can heal. Once that is done, he can be put in the brace. We're looking forward to that.
Zach has still been having seizure-like episodes. However, they aren't seizures - the 24 hour EEG he had after having a major not seizure that required us to call 911, and for him and his mother to spend a night in a complete hell hole says so.
The details: Last Tuesday Zach was scheduled to go to Broward General Hospital for a 24 hour EEG. This isn't our regular hospital, but it is where our neurologist is on staff. Monday night after dinner, Zach started having one of his episodes. It started out as they usually do, but progressed until it was pretty severe. At one point his breathing started to get all strange, so we thought it was a good idea to call the paramedics. By the time they arrived, he had almost returned to normal, but because he (like all Hunters boys) has a restricted airway - the paramedics thought it best that he be brought to the emergency room as a precaution. Now considering that he was due to be in Broward General in the morning anyway, we asked if he could be taken there. Unfortunately, the ambulance wasn't allowed to transport that far, and had to take us to Memorial West.
Now, West is part of the Memorial system - which is the hospital group where Most of Zach's other doctors are on staff, where he gets his infusions etc. We like the Memorial system. West isn't as good in our opinion as Regional - but at least all of Zach's records are available and his doctor's have access to him. We hoped that since he was there that we could get the 24hr EEG done, and avoid going to Broward General. Yea - no.
The on-call neuro (who saw Zach when he was in ICU when he was first diagnosed with "seizures") didn't want to admit him because he was being followed by another doctor, and he didn't know his history. Janine called Dr. Benke to see if he could help, but despite his efforts, none of the staff neurologists would admit Zach. (Dr. Benke was less than thrilled by all accounts.)
After the ER doctors consulted with Dr. Epstein (our regular neurologist), it was decided to have Zach transported to Broward General via ambulance. He and Janine got into the room there at about 3:00 AM Tuesday morning.
After taking the other boys to school, I headed over to the hospital. Let's just say Broward General's idea of a children's hospital is nothing like Memorial's idea. Not even close. I could not have been less impressed.
The room was tiny - there wasn't even really room for the two of us to sit down. We had the joy of there being another patient in the room with Zach. That itself was fine, except for the fact that this particular patient was having some pretty severe psychotic issues. Being the parent of a medically involved child, I have sympathy for other parents in a similar situation. This child would go from moments of normal behavior to screaming fits with some really "colorful" language. He would randomly throw objects or keep hitting the nurse call button. Lovely. He really should have been in an isolation room. Not just for the safety and peace of his roommates, but to give the poor kid some privacy and dignity. I wouldn't want my kid to be some kind of public spectacle like this kid was.
Did I also mention that I didn't see the nurse wash her hands when entering or leaving the room? Good thing there isn't some highly contagious form of the flu going around.
The nurse also got on my nerves by trying to tell me how to give Zach a dose of Trileptal. She brought the dose in an oral syringe and couldn't understand why I needed a spoon to give it to him... Her: "It's easier if you just give it to him in the syringe."
Me: "We can do it your way and he'll spit it out, or we can do it the same way we do it twice a day - every day of his life, and he'll take it without any problem. Which do you want me to try?"
Note to medical professionals - You may be highly intelligent, have attended the best medical schools in the country, graduated with highest honors, and have more "medical" knowledge than I. However, when it comes to my child I am a goddamned genius. Please don't make me prove you wrong.
Okay, off the soapbox.
Anyway, Zach spent the day and night hooked up to the EEG. He didn't have any major episodes - probably because he had one the previous night. He had a small one with dinner, but after looking at the recordings Dr. Epstein doesn't feel they are "seizures" - well at least not in the sense he originally thought. He has decided to take Zach of the Trileptal and have him try Topomax instead. It deals with a different type of seizures in a different way, and may be more effective than the Trileptal was. Since we started weaning Zach off of the Trileptal he has been more alert and happier, so at least we have that to cheer about.
In other news, Josh got his braces off - which he is quite thrilled with. He has to wear a retainer at night, but other than that his teeth are good to go.
Our baseball season ended last weekend with a loss in the first round of the playoffs. Given the fact that we lost our first 11 games before going undefeated the last month, this would go down as "a long season". Josh played really well though, so it's all good I guess.
We took a quick weekend vacation to Orlando so Janine could attend a workshop to get ready to take the state school administrators exam. She went to the workshop on Saturday and the men went to Seaworld. Janine joined us in a return to Seaworld on Sunday, and we all had a pretty good time.
The next weekend Janine took the exam. She doesn't have the results yet, but I am sure that she did fine. She is scheduled to graduate with her master's degree next month. (A few months early) Once she graduates and has her passing grade on the exam, she will be ready to work as an administrator. Well - get paid as an administrator at least. She's been doing a lot of administrative work for years, now it's time to actually have that job title.
Well, I guess that's all that's going on for now. Catch you later.
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