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Tuesday, October 23, 2012

Our story part 4

While we were at the other hospital, I received a call from the well known Children's Hospital we were awaiting to get in for a second opinion. Once they heard the seriousness of the situation we were facing, they bumped up our time to come in. We were hopeful.......
Sometime later, we set off. My husband, myself, my son and my mom. Making an 8 hour drive. Bryce was drowsy and 'out of it' from all the medicines coursing through his body and weak from the repeated seizure activity. Rather, the constant seizure activity. We pulled up to the hospital and had to call for a wheelchair. My strong boy was tired. And weak. These seizures left the right side of his body almost paralyzed. They actually did paralyze his right hand and arm up to his elbow, the rest was just so weak. I was so tired, yet hopeful. Hopeful that they could find some treatment, anything but brain surgery. This hospital was highly ranked in the US News and World Report's list of best children's hospitals for Neurology and Neurosurgery.
Fast forward. We got him settled in. We thought we were to see the main doctor--the reason we came. Rather we were told we would see an associate through the weekend. Someone not familiar with him. Someone who had her own 'plan' of how to treat him. I was not happy. More meds were started. More lethargy as my child slept away most of the day and night.
Monday came. The doctor finally came. He didn't want to run too many more tests and instead 'wait' for the other hospital to send the ones they did. I was under the impression they had their own tests to run-different tests--wasn't that why we came? He did mention a few--some sounded pretty dangerous, almost as bad as the surgery itself. I was disappointed. More meds started. We weren't as close to the nurses and staff as we were at the other hospital and I felt alone. Except one sweet nurse and one EEG tech we are forever grateful for. Each day brought the news "We are still waiting for his test results from the other hospital." Still seizing. More meds started. IV and oral. He went from sleeping all the time to suddenly being unable to do ANYTHING for himself. He didn't eat much. We had to help him use the bathroom. We had to give him bed baths. We had to turn him every two hours and apply cream because his skin was getting compromised. As a nurse, I knew if we didn't do something, he would develop bed sores and maybe atrophy. I tried to do exercises with his limbs. I asked for specific creams.
My husband and I kept 'shifts' with him. He did the nights, I did the days. (We both worked night shift at our jobs). I spent much time in the room crying out to God and begging Him for healing. Begging Him to guide us. Bryce was getting worse. Was I being stubborn? I questioned myself AND my supposed nursing knowledge greatly during this time.
When they seen we were getting upset, they finally decided to order some tests. The other hospital had yet to send any. So, we went for another MRI and a few other tests. By this time, the list of 'bad' meds he was on was astounding. They were trying their best to get him medically under control. I understand. But I am a mama first. And I didn't like what I saw. I went to the bathroom and called his other neurologist from the original hospital. I was scared. I didn't like what I saw. I wanted to come back 'home'. He said not only would they accept Bryce back, but they would hire a plane to meet us at the airport and fly us into their home airport. The hospital we were at couldn't get a helicopter out for a few days and they would have to stop and refuel before arriving at the other hospital. I couldn't take that chance. And I couldn't afford the private plane the home hospital offered-I knew insurance wouldn't cover that. Since I was a nurse, our home hospital said to release him to me for the drive back. I had been dealing with him through it all and they felt it was ok for me to bring him in.
We told them about it and the social workers were not happy. They didn't want to release him. They hadn't been able to get ahold of the neurologist and wanted to know how I did and what 'connection' I had. (The home hospital is a world wide known hospital too). I told them I had the neurologist's personal cell phone number and I would have him call them. A couple hours later, they came in with release paperwork and said they still didn't know how I did that-the neurologist told them about the offer of a plane to come get him. Well, honestly, I don't either. All I know is the 'home' hospital has always showed love for my family and Bryce. And I was praying often for the right decision. That is the only answer I can give anyone.
When we finally arrived at the home was a sight. We were admitted by some interns and resident. One of our favorite nurses came in and made everything stop. She was calling his neurologist right away. She was deeply disturbed by what she saw. She said, "This isn't Bryce. What happened to him?". He was on so many meds that he couldn't function on his own. AT ALL. We did everything for him. And I mean everything.............

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