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August 13, 2011…Claire was having seizures through the night and this was nothing new. We had given Claire several doses of rescue medicine, as instructed by our neurologist, and Claire began having some difficulty breathing. I had actually gone back to bed and I had a nagging feeling I needed to get up. Just as I was getting out of bed I heard Jake yell to me to call 911. I got on the phone and walked into Claire’s room to find Jake giving our sweet girl mouth to mouth. Claire was not breathing and had begun to turn blue. The paramedics arrived and whisked Claire to the Salem Hospital ER. I got Tristan up and we went down to the ER and my parents met us there as well. When I got to the ER I went to see my girl and she was intubated and they were in the process of getting IV access. On the way to the ER, the paramedic had actually given Claire and IO (drilled into her bone) to administer some medication and start fluids. When Claire was stabilized we had the PANDA team come from Doernbecher’s and transport Claire to the ICU.
Claire was intubated for 2 or 3 days…I honestly don’t remember now. Claire was kept heavily sedated to keep her seizures at bay and to keep her from pulling out her own breathing tube. For not having a lot of dexterity in her hands you would be amazed what our little Claire Bear is capable of. After a couple of days we weaned off the sedation meds and began to allow Claire to wake up. Claire was successfully extubated and was breathing on her own as if nothing had happened. The attending neurologist during that visit asked us if we would be interested in having a Vagal Nerve Stimulator (VNS for short) implanted in Claire. We said yes, and had been wanting one for some time but were told when Claire was a baby she was too small. Dr. Pinter said he would put in for a consultation with the neurosurgeon and get back to us the next day…20 minutes later he came back and said the neurosurgeon had a slot for 2 days later. Amidst our stress and anxiety God threw that door wide open…there was no doubt this was the right decision for us to make.
Claire had her VNS placed by one of the best pediatric neurosurgeons around. Dr. Selden has been recruited by bigger and better hospitals but has chosen to stay at Doernbecher’s and for this we praise God. Claire was in great hands…her operation went smoothly and we were discharged a few days later.
Claire ended up back at the hospital with in a few days…turns out she had a terrible bladder infections. After having her VNS for a couple of weeks, the swelling never went down around the generator in Claire’s chest…to our dismay and disappointment we had to have the VNS removed…do 6 weeks of antibiotics and then have it put back in.
That pretty much sums up the month of August. Tristan was an absolute doll…at 4 months old he was easy to please and loved flirting with the nurses. I would walk him around in the baby carrier until he would fall asleep and we spent hours at Claire’s bedside playing, singing, rocking, and of course…praying.
