I think I need a vacation!

I got Hunter into the pain clinic on Tuesday. The news is that there is nothing that can do for him right now. Dr. Mooney is setting up a care meeting with the other docotrs and then will go forward with the epidural. So for the next 3 weeks or longer, there is nothing we can do for Hunter's pain. Needless to say I am super thrilled about this! I do feel bad for Dr. Mooney though. He is trying so hard to figure out what to do for him and I think he is almost as frustrated as I am that there is nothing he can do. Hunter had his EEG today and it was a flaming disaster in that he will have to be sedated for any future EEG's. He was hitting, spitting, kicking and yelling die the whole time they were trying to get him hooked up. The tech was great and worked as fast as he could while a doctor and I were talking to him and holding him. We have a cardio appointment later today to try to figure out why his heart rate is half what it was before his last seizure. Genetics and eye doctor are next week, so we are very busy!

So on other news, I am flying out tonight to go home for 3 days. My dad is in the hospital and not doing real well. His heart is not working very well and his lungs are not doing well. I am excited to go home and be with them, but I am really really nervous to be leaving the kids at home. Rob is going to stay home tomorrow with Hunter and Karen one of our caregivers will be here on Saturday. Everything is going to be fine, I am just being a nervous mom again! I better get off and pack. I am a pro at procratinating!

He's Eating!

So with all the pain issues we have been having, the most exciting news was almost not mentioned! Hunter his eating and drinking on his own! He still has the tube in his nose just in case the nutritionist says to leave it. Today he even took his morning meds orally and not through the tube! He just woke up last week and decided it was time I guess! He needed hsi props for this one though, it has been a huge thing for him to have the feeding tube. We have been trying to avoid one for so long, but with this last seizure there was no choice in the matter he had to have it. I am hoping that tomorrow when everyone gets back from the long weekend we will get the okay to take it out and the last reminder of the big one in November will be gone!

Hunter News

Hunter is having a bit of a rough time. Last Wednesday I am 99% sure he had a small seizure. That is not so bad. It is in the fact that he is on seizure meds so for him to have another one is not so good, but at least it was not a big 95 tonic colonic seizure that lands us in the PICU for a week! Well ever since his last big seizure in November, his feet have been borderline on being bad. Well after this last one on Wedensday, they are BAD! When we got to the ER (the neurologist wanted to see him, but we were told to go home before they even got there), his left foot turned black. It would go in waves of color change between the black and bright red, but it stayed really really cold while his right foot was HOT and bright red. The ER docotr dismissed it becasue this has been an on going issue (the color change) since June. Well on Friday I took him back to his pediatrician. Not only was it time for our 2 week check up (yes we go every 2 weeks. The kid is odd so a doctor seeing him every 2 weeks keeps worry away from everyone. It is a long story so that is all I need to give now!). The other reason though is that he had been spending most of his days in a ball and screaming in pain from his feet. We had all kinds of nasty color changes on both feet, and lots of screaming so I needed someone to see him that had a brain! Okay ER doctors have brains, they see a lot of kids and Hunter is weird, but being dismissed and told that he had toricolis when he had a seizure makes me mad! His pediatrican agreed that this is not good having him in a ball and that he was in a lot of pain. He told me to call the pain clinic and try to get him seen. We didn't have great options. Come in and sit unitl Tuesday or stay home and deal with it.
The head of the pain clinic is a wonderful lady and she agreed that it is not a great choice. We can keep him at home and deal with it or sit in a hospital were is is not going to be comfortable anyway. So we are waiting until Tuesday when we have an appointment with out doctor. Our pain clinic doctor has already tried everything he can to help him with this issue and nothing has worked for very long. We are at the point now were they need to do an epidural to see what that can tell them. It will give him (hopefully) relief from the pain, but also it will tell them were the pain is coming from as far as is it the sympathetic or parasympathetic nervous system that is causign this (I think that is what he said any way!). So that might be what we have to do at this point to help him. He is not sleeping for more that 2 hours at a time even at night and when he tries to walk, it makes the pain and color worse.
I know that this is nothing compared to what some other mom's are going through, but it is still frustrating that I can't do anything for him right now. I will keep updating when we know more.

WE'RE HERE!

My 1st post on my 1st blog!
Were to start? Well today started out really well. We got great news from Hunter's endocrine Doctor. We don't need him anymore! He was being seen for short stature but he has gone from less then 3rd percentile to the 25th -50th! So he is normal, well sort of! So how does Hunter decide to celebrate? We get home and he throws up! He is slowly getting a higher and higher fever so I have been checking it every 30 minutes and we have stayed home letting him sleep. He took a 4 hour nap. I am just hoping that he does not repeat the pattern of having a really bad seizure like he did the last time he was acting like this. Nothing else new for today, which at the moment is a very good thing!