Naomi has been struggling these last few months with really bad seizures, that just seem to get worse no matter what medication we try. Also she has been struggling eating as well. Even though she was only allowed three pudding consistency meals a day , she was coughing a lot while eating which is a sign of aspiration. She has had a few close calls with chest congestion, but never pneumonia. I'am thankful everyday for her g-tube, which allows her to get all the fluid she needs and also and her calories and medicine she needs.
We decided that we needed to go back to Le Bonhuer to have her video EEG monitored, and to also have a swallow study. We got admitted on April 22nd. Entering the 7th floor we were immediately greeted by the seizure alarms going off in hallways, for those who have never heard it would think it was a fire alarm. It used to seem scary and sad to me to think that every time it went off some child was having a seizure. But that is why families bring there children there , to have a seizure and to catch it on EEG. It's a horrible thought to want your child to have a seizure, but you want to doctors to catch what has been going on at home. All the nurses and doctors were so sweet and caring it was so bittersweet to see them again. It seemed like yesterday we were here for 17days when Naomi got her Gtube.
Naomi had her swallow study on Monday at 1, she was hungry but when we went to give her the barium she clamped her mouth shut, usually I can get her to eat anything. She did not want it, but finally swallowed a bite, and it went down great. Then with the second bite he had aspirated it and was letting it sit there and not coughing it out , the speech therapist and also the Radiologist who was performing the test did not want to continue any longer. She then talked to us for a long time about our options. She said with Naomi aspirating on thick consistency she should no longer eat by mouth. My heart was broken for baby girl. She loves to eat, and I feel some of the only words I know she understands because she always starts moving her tongue and smacking her lips when I say food or time to eat. I loved feeding my baby, it was one for the joys she had. I hated that it was being taken away from her, but had to keep trusting and know that The Lord has an amazing plan for Naomi. As I could not stop the tears from falling, our speech therapist was so upset and had to walk away, she loves Naomi and has always done her swallow studies and was so hopeful for her, she didn't want to cry. She gave me hope and said that its not over and that we can try again. The rest of the day was hard because she couldn't eat and wanted to so badly. Doug an I took turns eating out in the family room, so that Naomi couldn't smell our food. Sometimes I felt so guilty eating, but knew that she was getting food the healthy way and she was not aspirating.
Naomi was hooked up to EEG that afternoon where they saw lots and lots of the seizures that she was having that evening and the next morning. The next morning we met with the Neurologist, she saw lots of seizure activity, we talked about different med options, which most of them are black box warning for under 2 years. She also talked with us again about the VNS(vagus nerve stimulator), which we talked about prior to coming as an option we may want, and they put Naomi on the books with a Neurosurgeon named Dr. Einhouse, who we also met with. We really liked her and we decided that we would do the VNS surgery, instead of trying all these medications that could cause liver failure. We wanted to try something with with no drug side affects. The chances that it works are different for everyone and it takes time to work.
Naomi's surgery was on Wednesday, our Neurosurgeon wanted to pray with us before surgery, that was such a blessing!! That has never happened before. The surgery was a little under two hours, he came out and told us everything went beautifully and she was in recovery and we could see her soon. She never has come out of anesthesia well, she was so sleepy. She slept most of the afternoon and woke up that evening. Since coming home Naomi's seizures have been the same with a few days worse than others. We are still hopeful for the VNS to start working. We are thankful for everyday and every blessing that The Lord has given us. We know that Naomi is here for a reason, and she has a purpose, we are so blessed The Lord chose us to be Naomi's family. We are so thankful for our support system, our Family, and friends, and our extended family of those we have never met but that stand with us in prayer and that love our sweet baby girl. We love you all! May The Lord continue to bless you all .