Thursday, October 02, 2008

Abe's home!

Thank ya'll so very much for your prayers. Abe's surgery went great. The last email I sent out wasn't proofed by Mike so I had some errors. Sorry! I typed it quickly just to get the news out. Dr. Broecker was pleased with how things went. The testicle was where he thought it was. He was able to bring it down easily. He said that it looked good.

After I sent the last email things got worse. We are still not sure why Abe had a tough time with this sedation. It could be the stress of the seizures the past two weeks. Just not sure. They were finally able to get him off the breathing tube. He stayed on oxygen until yesterday morning because each time we took him off his sats would drop.

Once the caudal block (similar to an epidural) wore off his seizures got really bad. Very hard, long and no break in between. We were trying to figure out why and thought maybe it was the pain. They gave him moriphin which helped with his pain but the seizures continued. I suggested ativan but I am just the mom. They had to try to get in touch with someone to approve that because the doctor on the floor wasn't sure if that was ok. Finally after getting in touch neuro they said ok. Then it was writing the order, getting the med from pharmacy and getting it administered. By this time it was midnight. Abe & I both were exhausted. Thankfully the ativan worked and he was able to get some temporary relief from the seizures.

Mo (my new angel) came by to get the paper work started for the vigabatrin. Abe's monitor went wild and he started having a seizure. So Mo got to see what I have been telling her about. It lasted way too long in Mo's opinion which I have been saying for the past two weeks. It lasted 30 minutes and he was out. We started on the paper work and within 10 minutes he was awake having another bad seizure. This one lasted 30 minutes too. Mo got them to give him more ativan which helped.

Good news is as soon as we got home we got a phone call from the pharmacy in Canada and they were shipping his vigabatrin. For those that don't know it's not FDA approved so we have to go through a bunch of mess to be able to buy it from some where out of the country. The pharmacy in Canada is where some of Michala's Aicardi sisters get theirs. Hopefully we will have it soon and it will work. Michala was in a study program for it 10 years ago and it worked wonderful for her.

Other than being exhausted we are all glad to be home and together again. We will go back in a couple of weeks to have his incisions checked. Thanks so much for your prayers!

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