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!