Another ER Trip

Before we left the hospital, Bryce was put on a fast track to see a Primary Children’s Neurologist. This meant that the first neurologist to get a cancelation, we were offered the appointment. The next day we received a call and our appointment was two weeks away. During those two weeks we continued working with the local NICU doctor. He was ABSOLUTELY AMAZING! He called us every few days just to make sure we were okay. He also gave us his number, just in case.

He was such a happy boy after we started medication

Four days after being discharged, Bryce started having breakthrough seizures. I called the doctor, and his phenobarbital was increased. It stopped his seizures again, but only for a few days. By the time we met with a neurologist, we had increased the phenobarbital two more times which put Bryce at the max amount he could have without it being toxic. Despite such a high dose of medication, he continued to have uncontrollable seizures.

Finally the day of our appointment arrived. We left home at 6 am and started our four hour trip to the Salt Lake area. That day we discovered what a TERRIBLE traveler Bryce is. We planned to stop once to feed him, giving us an hour to do so (eating was still a struggle). The first half of the trip was fine, Bryce stayed asleep. I wish it was the same for the second half, but of course things never go quick or smooth for us (must be Heavenly Father’s way of teaching us patience). When we stopped to feed him, he fought it. He wanted absolutely NOTHING to do with his bottle. We fought him for an hour trying to get enough milk in him (in the end, we were only able to get 2 ounces). We were out of time. We were worried that he got so little, but he wanted nothing to do with eating so we hit the road, hoping he would fall asleep. HA! Of course he didn’t. In fact, he became very frustrated to be in his car seat (he thought we were torturing him). We ended up having to stop every 20 to 30 minutes to calm him down. He would start crying, then progress to screaming. We learned very quickly that if we didn’t stop, take him out of his seat and calm him down soon enough he would make himself puke (for a baby who didn’t eat a lot, this was a big deal). It was HORRIBLE!

I’m not sure how we did it, but we made it to our appointment on time. The neurologist came back and we relayed Bryce’s history. Then we asked a bunch of questions, hoping he would help us understand why Bryce’s seizures were constantly returning and what to expect for his future (this was all so new to us and we needed help making sense of things). Unfortunately, the neurologist was NO. HELP. AT. ALL. We were NOT impressed! By the end of the appointment he told us we needed to take Bryce to the ER at Primary Children’s, but didn’t explain why (honestly, I think he could sense our frustration with him and just wanted us gone).

Although we didn’t understand why he wanted us to take Bryce to the ER, we decided to go just in case something serious was going on. By the time we arrived, there was a team waiting for us.  For the second time in a month, I held my sweet boy down while an IV was jabbed into his little hand (it still breaks my heart to see him fight and hear him cry every time a needle is stuck in him). While in the ER, we met a different neurologist. She actually listened to us, answered as many questions as she could, and was so helpful. She informed us that, because Bryce was on the max dose of phenobarbital and still having seizures it was time to add another anticonvulsant. We agreed and shortly after he was put on Keppra (like phenobarbital it did stop his seizures, but inevitably they returned after a few days). Since we started a second medication, it was decided we should stay the night so Bryce could be monitored.

Snoozing away after being sedated

The next morning a group of doctors came in to talk with us. They felt another lumbar puncture was necessary. All the emotions I felt during his first flooded over me! I knew I NEVER wanted him to go through another. I also knew these doctors only wanted to help my son as best they could. With heavy hearts, we agreed to the procedure. Luckily this time Bryce was old enough (by a few days) to be sedated. I was able to stay close to him, but it was still hard. I watched as three nurses pinned my sweet boy down while the doctor stuck the needle into his back. As soon as Bryce felt the needle he quit breathing! I listened as the monitors wailed, and cried as I watched two of the nurses put an oxygen mask on him, trying to get him to breathe. Without realizing it, I held my breath while anxiously waiting for my baby to start breathing again. It felt like forever before he finally took a breath (I know I was a little light headed from lack of oxygen). It was terrifying!

Later that afternoon, his test results were in. Again, they came back normal (big shocker, right?). Because everything looked good we could go home as long as he could keep his food down after having been sedated. He slept for five hours after the procedure, then finally woke up. We gave him a few ounces of Pedialyte. Thankfully he kept it down! Next we gave him some breastmilk, and again he was able to keep it down. It was time to go home!