Updates

Sorry for the lack of postings. It has been interesting around here.
So in Hunter news, the care meeting with the doctors happened. They came up with a game plan and an idea of what they want to happen. Now they need to have another meeting to make sure it is going to happen and figure out when it will happen. This next meeting is suppose to happen this coming Tuesday the 24th of March. I will find out after the meeting what is going to happen. The major possible set back is that Hunter now has viral pneumonia, so that could delay when we get Hunter in.
So there is the plan, but I didn't explain the why or what they are doing. Hunter has been having major pain and swelling issues in his hands and feet for years. The worst happened last May/June when his feet started turning a very nasty blue/black color. After his last very big seizure in November they have been consistently a blueberry color when he walks around and they are very painful. His hands have also joined in with the color change now. So what the pain doctor wants to do is stop ALL pain meds 2 days before we come to the hospital. Then admit Hunter to the inpatient psyche unit for 2 days. He wants to have cameras in Hunter's room so he is watched at all times. He also wants Hunter to have OT/PT and school while there in the hospital. On day 3 we will head to the OR and they will place an epidural. While he is sedated they will also get spinal fluid, place a PIC line, get blood, urine, do dental work, get a detailed MRI of his spine, do a nerve conduction study, and possibly do another skin biopsy. When he wakes up we will move to the surgical floor and they will then put the epidural meds in him. At that point the idea is to go strongest to weakest in the meds department but giving each med a full day to see the full effects.When they have used the last of the meds, they will take out the epidural and PIC line and we will go home. They will collect the information and we will all meet again to discuss the results and come up with a care plan. So with any luck we will actually be able to have a summer vacation this year! Last year was side lined with not knowing what was happening with poor Hunter.
So on other Hunter news, we had his wheelchair eval the other day. The process has been started now on getting Hunter his very own chair that will be all decked out for what Hunter needs! It is really cool to! We will be able to go hiking with out the chair getting stuck, or go to the beach with out it being to hard to push! I think Andrew will like walking next to it a little better than the old one we have. The new one sits up higher, has bigger wheels and is just more sturdy over all. We even got to ask for it to match Hunter's blue helmet and Andrew's blue service dog vest!

Well that is the biggest news. We have all been sick the last week so this last week has been lost for me. It has given me a chance to process the passing of my grandma though, so that is good. She passed away a few weeks ago from uterine cancer. She was in so much pain that we were all relived that she in no longer in pain, but the selfish side of wanting her still to be here to touch and hug and talk to is what is hard to deal with. She was such an amazing women. My mom was the youngest of all her kids, so when I was born, my grandma was the first person to hold me. She even chased the doctors down the hall when they tried to take me away (there was going to be an adoption but then there wasn't). I can just imagine her all of her 5'2" running down the hall yelling at the doctors to get back here with that baby! She taught me so much and loved all of us so much. She is truly missed. I know though that she is watching over Hunter along side my grandpa now. Another guarding angel never hurts!
I will try to do better on the posting. I am a very very bad mommy! Sorry! Please pray that Hunter's lungs will hurry up and heal. While his chest x-rays are not the worst x-rays in the world, it was one of the worst that he has had. He has been hanging in there like the trooper he is, but he is very tired and very cranky! This would translate into mom needing a nap more than usual!

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!