*The following is a journal excerpt from what I wrote yesterday morning...
I have a renewed perspective and many things to be grateful for this morning.
I am grateful that I am at home and not in Salt Lake City.
Instead of being disappointed that Ben stayed home from school today and I can't get everything done that I had planned on, I am grateful that Ben is alive.
Instead of being frustrated at having to run to his side every few minutes to wipe his incessantly runny nose, I am grateful he is no longer in status epilepticus*.
We were in the ER with Ben yesterday for 7 hours. He had started a cluster Saturday afternoon and we were out of his meds. We had tried to renew them that morning but there were no more refills so we had to wait for the doctor to okay it...and of course that doesn't happen on a Saturday :)
He seized all through the night which was no surprise. By morning he had hit 20 seizures. Usually, when we let his clusters go because of lack of meds he winds down around 20. However, he kept going this time. Every hour or so he would have another one. Andy gave him a priesthood blessing and after #24 we decided to take him to the hospital. We sent the other kids to church with the Smiths and headed into town just as everyone else was going the opposite direction to church. On the way there we talked about the possibility of him being done now and there would be no point in going but we felt justified as we were checking him in at the desk and he went into another one. It was good timing because they admitted us right away in spite of the line ahead of us. They got him all hooked up as we explained the situation.
As usual, all the nurses and everyone else commented on what a handsome little guy he is. They gave him some valium and he slept. After a while they told us we could leave when ever we felt comfortable with it. Then he had another seizure and they gave him another dose of valium. Knowing how things go around the ER and hospital, I had made sure I had come well prepared with plenty of reading material. I tried to get my mind off of things while I held his hand and he continued to sleep.
About an hour later he had another one. This time they gave him rectal diastat which is what he is used to.
Church was over so I called the kids at home and then arranged for my dad and mom to go pick them up and take them to their house.
Another seizure and another dose of valium.
Soon after, the NP came in and sat down to talk to us. The doctor on call had gone home but he had been in contact with him and they had decided it would be best to transport Ben to Primary Children's hospital (1.5 hours away).
This is not what we had expected and kind of took us by surprise. We had just thought we would bring him in, they would give him the dose of meds we couldn't provide at home, his cluster would stop and then we could take him home. Who knows why the seizures kept coming but they no longer felt they could do anything for him there. We, a bit reluctantly, agreed to the plan. I called my mom and somewhat broke down as I told her what was going on. The kids were fine with them. It was my brother's birthday and we had been hoping to make it to the celebration that night. I texted him and apologized for our absence and wished him a happy birthday. When I got off the phone Andy suggested we not rush into it and maybe give it some time to see if his cluster was over before we rushed off in the ambulance. We mentioned it to the new doctor on call and he said it was ultimately up to us but they thought it would be wise to expedite the process. Andy left it up to my mother's intuition. It had been 1/2 an hour since seizure #28. The doctor said it would take about 30 minutes to get Ben in the ambulance and since Ben was going 1-1 1/2 hours in between seizures I suggested we wait 1/2 an hour before they started the process. They went ahead and had me sign the forms authorizing transport but agreed to wait.
What happened next I can only describe as a miracle. Ben had been awake a few minutes at a time throughout the whole ordeal but even when his eyes were open he was still really out of it. After I signed the papers, he really started to wake up. He was looking around and even started saying "Maimee" in a pathetic little voice. Andy was very excited but I didn't dare get my hopes up yet. However, he continued to progress and within a few minutes he was sitting up in my lap having bits of water dropped into his mouth from a straw and eating little crumbs of crackers.
I called my parents' house and my dad answered. I quickly explained what was happening and that we probably wouldn't have to go any more. We both became emotional as he explained the prayers that had been offered on Ben's behalf since we had called them.
I told him we were hoping to leave within an hour or two barring any more seizures and that we would keep in touch.
Andy went out and talked to the doctors about not transporting. They were happy that Ben was doing so much better but still felt like it was kind of risky not to go to Salt Lake. They supported us though and started working on reversing the request to transport.
As we were waiting to be discharged I returned from the restroom to find a member or our bishopric and his son there visiting with Andy. Dressed up in white shirts and ties, it meant a lot that they would come all the way up to check on us.
We, of course, had had to inform some people at church that we wouldn't be there to take care of our callings and so word got around. During our long hours in the ER we received many texts and calls from friends and neighbors offering to help in anyway and letting us know they were praying for us. What a blessing to have so many people surrounding us with love and concern.
We made it out to my parents' home in time to wish my brother a happy birthday and say hello to my grandparents before they went home.
Bapa fed Ben his sunday dinner like he always does and we rejoiced in the miracle that had occurred.
I would be lying if I said that "the worst" didn't cross my mind that evening when they told us they wanted to transport Ben. Was this it? Would this time be the last time? I often feel like I have to entertain those kinds of painful thoughts at such times so my heart will be prepared for a tragedy should it happen, all the while praying inside that it won't.
I read on a blog this morning about a woman that sings "You are My Sunshine" to her son with disabilities and cries at the last line..."Please don't take my sunshine away." I have done the very same with Ben. I know the possibility that Ben will be taken from us is always there and so times like these are appreciated as they remind me of the precious gift that he is.
So yes, as Ben sits here sneezing away and I sit here in my jammies, unexercised and unshowered, I thank my Father in Heaven that we are here, at home, sneezing, wiping...and breathing.
*The doctors categorized Ben's condition as status epilepticus even though it wasn't one prolonged seizure and the seizures weren't as close as 5 minutes apart. They said that because he was not recovering from his post ictal state in between each seizure they were calling it status.