Eli’s First Two Weeks at Home

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The last two weeks since returning home from Texas have been weird. The first week home Eli did very well. I saw a clear difference in his behaviors and his happiness. He was able to manage his emotions better, and although he still had a few difficulties overall he was able to quickly calm down when frustrated or angry. He also seemed happier than I’ve seen him in months. There were a few things I noticed that worried me but I know I am hyper aware and hoped that my concerns were just simple paranoia. I noticed some staring episodes that he has not had in the past and began worrying they were absenceseizures. And he had a handful of unprompted laughters but they were very different than his laughing (gelastic) seizures from before the surgery. Most of unprompted laughter came just before he fell asleep too- just like the gelastics. Then, this past Monday night, he had a partial complex seizure at 10pm. It lasted about 5 minutes, way longer than any other seizure that he has had in the past. He was rushed by ambulance to the emergency room. That evening he had things that we were assuming were seizures but the hospital staff were not convinced. He would stare a the ceiling kinda weirdly for about 15 seconds, then would like come out of it and immediately start crying for about 10 seconds and then would go back to looking weirdly at the ceiling. This happened over and over again for like 15 minutes. He would not respond to anything we said. Cartoons were on the TV all night and he wanted nothing to do with it- and that is not normal. It is hard when the doctors don’t understand your child’s diagnosis. That night in the ER we had to explain to several doctors what HH was. One doctor asked what kind of seizures Eli had before the surgery. I said gelastics and she said “I’m not familiar with those.” Again a reminder how rare this is. We were admitted and the next morning noticed that Eli could not spit any words out. He would say um, um, um, like 20 times and would point at things but could not say any words. This was really scary. And it was unknown why this was happening. He had an EEG that showed brain slowing. That evening he had a fairly normal MRI. Over that day I was able to speak to his doctors in Texas and his neurologist in Baltimore. The Texas team assured me that it was just the process of healing from this major surgery and everything regarding these brain functions deep in the brain is not entirely known yet and they were still optimistic that the seizures would just die off over the next few months. They also told me the surgery injured part of the brain they did not want to heat with the laser but if there were going to be complications from this they would have seen it immediately- by Eli not being able to use much of his left side of his body. Wednesday morning right when Eli woke up we asked him how he was feeling. He said “Smashed up.” Both Jeff and I stated that we felt that way too and Eli said “Hey, we match!” and that we had that “in common.” We were so happy to hear him not only be able to talk, but also have a higher level of processing. It had been over 24 hours where he said very few words even though he tried to say things. We left the hospital Wednesday night and he seemed back to normal. They upped his medications. He has had a few difficult days with his behaviors. He is having these manic-like behaviors. Constantly running around, throwing toys, punching people, making noises, unable to settle. Eli had a great morning yesterday as we were “treasure hunting” at yard sales. We were so sad to miss his last day of school/teacher appreciation picnic on Wednesday. We really wanted to see everyone one last time and thank them so much for all their support over the last few months. On Friday it was so nice that his teachers came to visit him at home. He loved showing them around our messy house! We have been so fortunate having family stay at our home to help out these last two weeks. My in-laws helped out the first week and were able to spend some nice time with Eli. My sister was awesome as Eli’s behaviors started to deteriorate. It was great to have her retrieve clean underwear and toothbrushes while were at the hospital! She used her vacation time to help us out and went back home feeling exhausted! My parents are coming this week, and my sister in-law next weekend. I am lucky to have people willing to travel so far to help us out! I was also able to speak to another parent who was so helpful in sharing her experiences with her son who had to have the ablation surgery twice. She reassured me and put things in perspective. I joked that she needed to be hired by Texas Children’s Hospital because the way she explained things to me was so helpful, informative, easy to understand, and calming! So, we will continue to wait and see how things go. We will provide opportunities for him to use his energy in more positive ways and will continue to hug and love on him even during his most challenging times. We will stick close to monitor for any more seizures. We will try to remember that this is a process and that he is still healing from major brain surgery which can take months to heal.

2013-06-10 Eli(1) (Custom)