Monday, March 2, 2009

Follow up

We got a new receptionist at work so bear with me today because it may take awhile to get through this update. She is a sweet little timid thing, and I feel for her because she seems a little slow learning how to answer the phones .... which won't work around here. I am afraid she may cry before the end of the day.

So I may repeat myself a little from prior posts after the hospital, but I was so tired that I barely remember what I wrote. So Friday night we dropped Emily off with her father, and headed to the hospital. When we walked in we were so impressed with the way everything looked, and how everyone treated us. Once they got us checked in they showed us to the room where Jude would be staying. There was a crib for Jude, a hospital bed for me, and a fold out bed for Mike. The nurse came in, and introduced herself as Robbie and began taking all our information. She told us how beautiful she thought Jude was, and was very helpful in making us feel comfortable. Once they got all our vital information they sent in the tech to hook up Jude's eeg leads.
Image and video hosting by TinyPic
Jude normally sits very quietly when he is being hooked up to the machine, but he did get a tiny bit antsy nearing the end of this hook up. While they were applying his leads I started feeling really sickly. Looking back I wonder if it was the smell of the glue that made me so blah. If you are wondering, we can move Jude around with all that equipment attached to his head. We just have to keep him close to the pack where the leads are attached . Here is his daddy feeding him during his eeg:
Image and video hosting by TinyPic

After the nurses came in and out we got to bed a little after eleven. Jude had a few seizures throughout the night that were violent. I think I had mentioned to you that this was disturbing to the nurses, and techs. Dr Riela stated that they had called him rather upset, and this is understandable. It could be a liability issue for the nurses if anything happens to Jude. We assured them that this was an everyday issue that we deal with, and we won't ever be used to it, but we do deal with it. We tried to tell them not to worry, and put their minds at ease.

The next morning the Dr came in to tell us he got enough information from that night, and that we could go home. Prior to going home though we had to discuss everything he had found out. So the Dr led us back to a room where we observed the eeg, the video monitoring, and the MRI from cooks. The doctor stated that the flat brain wave lines he had seem on the prior eeg had decreased some, and that was most likely due to the decrease in the phenobarbitol. He then would take us through each seizure, and he explained everything in a way we truly understood. He would show us where the seizure would start on the right side, and how it slowly built up until Jude would yelp, and start jerking. So we now know the seizures are originating from the right side of the brain. Why? because we also now know the right side was severely damaged. He took us frame by frame through the MRI and with a lot of patience listened to our questions. He pointed out where the schizencephaly was. Jude has a cleft (which is the schiz) on the right side of his brain, and he just barely has one of the left. We had NO idea before that the bilateral shizencephaly was almost NOT bilateral. Also, he agreed with the neurosurgeon at cooks, and not the neurologist regarding the polymicrogyra, and said it's not there. He also pointed out the corpus callosum...remember we were told there wasn't one? He said it's small but it's there, and pointed to where we could see it clearly. We had always wondered how it could disappear when they measured it in the in utero MRI. The doctor then said that, "The real problem here is that Jude has a lot of missing white matter". In other words, Jude has cortical thinning which was the original diagnosis a long time ago. He said the area that is affected will cause mobility problems in Jude, and that he will have Cerebral Palsy. Mike, and I explained to him that we felt Jude was already showing sign of CP, and had mentioned this to Cooks before. Cooks told us it was to early to diagnosis CP, but our new doctor agreed. He agreed that Jude will never be normal, and will have a hard time walking. Although, he also said that babies have a lot more brain cells then adults do, and they can find new communication routes in their brain. They cannot establish new paths, but new ways to communicate. He said it will be up to Jude on what Jude can do. I asked him about the stroke in utero. He said he couldn't see the old blood anymore, but what probably happened is a stroke or bleed in the Choroid plexus which is where our brain cells are stored. I remembered hearing the choroid plexus from the in utero MRI. The dr explained that a lot of babies have this happen, but the difference is most overcome the issue. In Jude's situation his cells just went the wrong way because of the bleed thus causing the "migrational" issue the other dr referred to.

So the doctor then pulled a form out showing the medications he would use in Jude's circumstance. He did say that these seizures are without a doubt infantile spasms. He said the pheno was probably doing something, but it's not the right medication. He said he uses one of four meds, vitamin B6, Depakote, Prednisone, or ACTH. He then broke them down like this;
Vitamin B6 - least evasive form of action, but only has a 25% success rate
Depakote - This could work, but it can have serious liver complications, which is a bit scary with the liver problems in my family.
Predisone - We all know what this is, a steroid. It has side effects and Jude will swell up.
ACTH - The million dollar drug as they say. It's $24,000 a vial and Jude would need a vial a day. The doctor was nice, and honest with this one. He said " This is a very expensive drug with a high mortality rate. If Jude were normal I would say let's take the chance to get these seizures stopped asap to let him develop normally, but the reality is Jude isn't normal." In other words, why take the chance of Jude dying due to a seizure drug on top of everything else. I understand what he is saying, and I respect him for being so honest.
So we chose to leave Jude on the topamax right now and start weaning that down, and we have added the Vitamin B6. After 30 days the pheno and topamax will be out of his system, and if the vitamin B6 hasn't done anything we will try Depakote.

So we then went back to our room, and they removed Jude's head gear. I then sat down to feed little Jude:
Image and video hosting by TinyPic
Image and video hosting by TinyPic
On our way out Jude started to seize so we waited in the hospital room until he was done. The nurse Hannah came in to talk to us while he was seizing. We told her Jude's story, and she even got the website address to this blog. She said she normally works in the pediatric wing so the epilepsy monitoring in infants is new for her. She was very nice, and said she would keep us in her prayers.

So we then made it home, and Jude and I collapsed into the bed for almost three hours. We were all pretty wiped out the rest of the weekend, and didn't do much. Jude's seizures greatly increased in number yesterday, and last night. I put a call into the doctor today. I also noticed his cheeks are frequently becoming bright red, and he has a small rash. I am afraid he is having a side effect of the topamax which is overheating. I will update later once I hear from the doctor.

Home at last:
Image and video hosting by TinyPic

Thank you sharing in my novel.


Denise said...

Miracles can happen in so many ways ... keep trusting your heart and have faith! Our prayers are always with you. Thanks for the update!

~The~Wacky~Whittons~ said...

Oh goodness. I am just hoping that everything works out! I can not believe $24k a vial!! That is CRAZY! Is it made of gold??

Kim said...

I didn't make it through this post without tears in my eyes. I am at a loss for words. Stay strong and enjoy every day as you are already doing!

Holly Mackerel said...

Is that ACTH that medicine made from bald eagle foreskins? Baby seal testicles? Duckling beaks? Sweet Mary, the drug companies should be crucified for producing anything that costs that much.

Bronx Cataldo's said...

The price of ACTH went through the roof some time last year and it is usually the first defense that they use for IS. I am surprised they didn't mention Vigabatrin(Sabril).With his diagnoses of IS you should be able to get an increase of PT,OT and get him evulated for speech and see about getting a vision therapist.
Hugs from the Cats in the Bronx