I'm not sure how to even begin to write about all the emotions and activities surrounding the brain surgery of my little boy. Looking back on it, I shut off a lot of the fear and other scary thoughts while it was happening and just tried to stay focused on one step at a time, getting done what needed to be done. I really did have faith that God would bring him through, and I had confidence in the skills of the doctors.
The doctors really didn't behave as if it was such a risky surgery that he may die-- they only shared minimal risks, and for them, this was "just another day at the office." They assured us that having the surgery before his seizures got more frequent or resistant to medication was really the best route, especially since he is so young and his brain can re-wire itself to function perfectly normal. They told us that each seizure could increase the epileptic "messages" in his brain to make more of the brain have to be removed. So I never doubted we were making the right decision to have surgery now. But that didn't make it easier to send my little baby off into the hands of strangers.
The day before surgery, Grandma & Grandpa came up to stay with the older kids. We all got matching purple (the color for epilepsy awareness) shirts for Team Jacob. We had a little fun together as a family before the big event. The big kids were aware what was going on with Jacob, and I think they understood it was serious, but I'm not sure they completely understood the risks or dangers. The faith of a child is amazing-- they trust that their parents make the best decisions for them and as long as some sense of normalcy remains in their lives, they have no fears of death or sickness. They know their little brother is special and they were able to see the miracle of prayer.
We left the day before surgery and stayed at a home built near the hospital that is free to parents of children undergoing procedures at the hospital. It was a huge blessing to us. We were able to relax and spend the night in a real bed with hot showers and even free food rather than have to get up at 4am to drive the hour and a half drive to the hospital. David's House was just one of the little answers to prayer we saw through the week. While Brett stayed at the hospital with Jacob the first night, I went and stayed back at the house. It was much better than sleeping in a hospital chair. Then we alternated the second night, so at least one of us could get a good night's sleep.
Besides the home-cooked meal they also provided for dinner one night, and the great snacks we were able to take to the hospital for the day, David's House also has an amazing playroom, so when Grandma & Grandpa brought the big kids to visit, we were able to take them to the House to play, which was even better than the park to the kids! They loved it and it made the hospital stay so much more comfortable.
So Wednesday morning we got up bright & early to get Jacob to the hospital. The prep didn't really seem to take long at all and Jacob was in a really good mood, even in spite of not being able to eat. They didn't put in any i.v.'s or anything until he was asleep. He played in the waiting room while we filled out papers and talked to the various doctors and nurses. They were all great with him and really prepared us for the day. I was able to walk with him back to the operating room and hold him while they put the anesthesia mask on him. It was a little scary as I put on my sterile gown and walked him into the huge, white room with a tiny little bed in the center. (Thankfully I'd been through it with Abi's surgery so I wasn't as intimidated.) He only fought it a few seconds before he was under and they put him on the table.
Then came the wait. They told us the surgery would be five hours. The actual surgery, though, didn't start till about 10:00 by the time they put him through the MRI and did all the prep work. So we were in the waiting room from about 8am until about 3pm. Thankfully, we were able to snag some comfortable recliners. We got headphones for our IPads, so after I read a little, I watched TV on that, we went to get lunch, walked around the hospital some, and I even went back to David's House a little while to catch a nap. The funny part of that is I caught a shuttle to get there, and the shuttle didn't come back at the time I was ready to leave, so I almost missed getting back to the hospital in time to catch the doctor as he was coming out to talk to us.
So the surgery went well. None of the "worst-case scenarios" like loss of blood or an infection happened and they were able to get out all of what they did determine was most likely a low-grade tumor. (They have to send it to the lab and haven't yet gotten results, but that is the doctor's best guess, is that its a tumor.) When the tumor was out, there was no more seizure activity and more than likely it will not come back and he will remain seizure-free for the rest of his life!
He was fighting & raring to go as soon as he woke up so they called us back to the PICU to hold him. He whined and cried off and on for a few hours but I was able to hold him, hooked up to all the i.v.'s and machines. He slept a good while, and didn't really want to do much as the anesthesia wore off. The first night Brett stayed with him and he said Jacob slept fairly well, in spite of being awakened by nurses every hour or so.
The day after surgery he didn't really want to eat anything we offered him, until lunch when I ordered him some chicken nuggets and mac & cheese. He started to eat and immediately afterward, he got back some of his energy and spunk. He really just wanted something hot and good-- not the bland crackers & Cheerios we'd been offering! He was still pretty tired but managed to play a little and watched some TV and drank a whole lot of juice.
I stayed with him at the hospital the second night, and they only woke him every three hours, so both of us actually slept fairly well under the circumstances. On Day 3 in the hospital, Mom & Dad brought the kids to visit. They hung out in the hospital room, saw Jacob acting like his normal self, eating and laughing. Their visit actually perked him up-- he had been asking for Abi and Leah and Andrew all morning and was really excited to see them. He started getting sassy and mad at any doctor or nurse that came near him. He was getting tired of being poked & prodded and was acting like a typical 19 month old boy, throwing his toys and refusing medicine.
And then they told us we were free to go home. Brett & I were both anxious, seeing as how they had prepared us to stay 5 or 6 days, but the doctors assured us they wouldn't let us go if they didn't think he was ready. He was eating, he was happy and there were no complications. He only had a little swelling in his right eye, but they assured us that would go away soon. We really weren't eager to get home so soon to have to go back to our normal care for 4 active kids, but we also didn't really want to spend another night in the hospital if we didn't have to. So we took Jacob with us back to David's House. We had lunch with Mom & Dad and all the kids, played in the playroom and then they left. We took a nap and enjoyed a quiet night in the House with just Jacob, and went home the next day.
Today, over one week later, life has returned to normal. He was still a little sleepier for a few days, although he wanted to run around outside and do everything he used to do, but he got tired out quickly without realizing it. (I think they may have put in a little extra energy and even a few extra words in his vocabulary when they opened his brain.) Now he is just as spunky and sassy as before and the only way you can really tell he had surgery is the 2 inch square incision above his left ear, and a few other scars from i.v.'s. He bounced back to normal faster than anyone imagined and is living proof that prayer works.
Through the entire ordeal, we felt all the people praying for Jacob and for us, and we truly believe it worked. When we posted about his surgery on Facebook, dozens of people shared the post and entire churches, entire groups of people were praying, all over the country. Every time I thought about it, I was overwhelmed with the amount of love. So many people showed their support and showed that we are really cared about. And because of all that love and support Jacob is going to be a 100% normal little boy who went through something no kid should have to go through but made it out on the other side as a walking, talking miracle of God.
