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Wednesday, September 5, 2012

Our Story part 3

Trying times were soon a coming. After that wonderful event that happened in part 2, things didn't just 'get better' right away as I was hoping....and *blushing* expecting them too. No, we would have to walk through  what seemed like 'the valley of the shadow of death'. At the same time my son was experiencing these things, I too, was undergoing some health crises of my own. After the delivery of our precious 4th child, a daughter, I had developed some health issues and old ones started flaring up. I refused to pay too much attention to them. I refused to do anything besides take care of my son and my family. We have a wonderful family doctor. Not only was he there for me and treating me, but he was there for my son as well. We all spoke by phone while in the hospital. Asking him for advice--him seeking out as much information as he could find--always looking for 'the best' in healthcare for our dear boy-speaking to his son who was in neurology rounds at the time. He also encouraged all of us and answered his phone when we needed him. We thank God for him. He narrowed our search down to 3 hospitals to choose from when we decided to seek a second opinion. We took one closer (can you call 280 miles close?) and he was trying to reach them to get Bryce in.

Bryce was soon sent home from the hospital. Still seizing. Still often. We would make trips back and forth to the local Children's hospital. During our time there, they ran so many tests. Injected him with so many medicines both for his seizures and for tests. I was so scared and calling out to God, "Please, this is my fault! Please don't let these medicines hurt him. Please let him be normal.". They began to tell us that every time he seized it was dangerous to his brain. He could have brain damage. To them, the only option was surgery. We had tried a lot of meds and now they were sending in people from the surgery team left and right to talk to us. Social workers, nurse practitioners, assistants, etc. I had so many business cards it was awful. I just wasn't ready for that. I was still praying for God to 'miraculously intervene'. I read the New Testament often-most especially the miracles of Jesus. I knew the Bible said that He was the same yesterday, today and forever. I had hope. I knew surgery had to be the last option and at that point, he seemed 'stable'.

Boy, do things get darker before the daylight. We would soon find out just how dark.

Bryce was still at home.Then, one day we noticed something 'different' about his seizures. Mainly confined to his right arm at this point, with occasional spreading, we noticed that his arm was locked. Bent towards him. He was crying in pain. It was red from all the muscle work and warm to touch. Something was not right.  It wouldn't loosen--it wouldn't stop. I was hesitant to return to the familiar Children's hospital because we were waiting to get into the #2 children's hospital in the nation for neurology and didn't think we had time. I called our family doctor, whose son was in medical school and doing neurology rounds in another local Children's hospital. He sent us right away to the ER there and warned the ER doc and his son ahead of time we were coming. The son was to be notified when we were there so he could tell a certain doctor. As things often do, the bottom fell out. Actively seizing, we were sent to the waiting room for hours. But 'if his seizures get worse we will pull him in right away'. HOW MUCH WORSE CAN HE GET? The seizure won't stop!!
Long story short, due to poor communication by the ER, neurology went home for the day when we finally got pulled back and seen by a Nurse Anesthetist  who was 'training' in ER. All of the usual ER docs were busy. She was very unfriendly and didn't seem concerned. *Disclaimer--I love Nurse Anesthetist's and some of my great friends and the colleagues I had from work taught me far more than I can ever describe. This is not a rant on a particular career or type of doctor. It had to do with the gravity of the situation and the way she acted.  *

Luckily, while I went out to the car, the #2 hospital we were waiting for called me. They had a bed for him!! The problem? It was a week away! I told her the situation with him and the horrible ER care we were receiving and she called the doctor then immediately called me back. Her response? "Bring him as soon as you can--we will make room." Oh! I was so thankful at that moment and ran back into the ER and said "Let's get him out of here!". More time later, we finally had someone grace the door of our ER room. It was a Pediatrician who wanted to admit him to the Pediatric floor. I said "Absolutely not! He is having a seizure, he has a seizure disorder, and he needs to be on the Neurology floor not Pediatrics." Even though I am an RN (ED myself) AND most importantly his mother, she just looked at me blankly and said, "No--he can go to Neuro tomorrow if they want him to. Pediatrics tonight. Neuro has gone home." I was livid and told them we were leaving and he was heading to another hospital. More hours later, the new 'night' shift came on (I was a night shift gal myself so I love those types haha!). She took better care of us in one hour than we had been treated in the previous 5. Never saw a doctor after the initial "So, what seems to be the problem?". Never saw a nurse. The poor Paramedic felt sorry for us and came in several times to check on us. The supervising doctor checked on us twice but he couldn't do or tell us anything. I had to beg for test results--they drew blood but were going to discharge him without telling us anything. If they weren't building onto the hospital behind us and had bullet proof glass, we would have went through the window to get out of there! The arm had let up. A little. It would soon return....

 I was thanking God and so excited for this chance. I was still full of hope.

My 'bubble' would soon burst. The hope would remain though not as bright, the elation would turn to fear and anger. But NEVER did Jesus leave me. As a matter of fact, He became more real to me in the coming months than He ever was (sadly) and more faithful than anyone I had ever known (He didn't sleep-when I cried out in the middle of the night or I couldn't or wouldn't sleep, He didn't leave. He didn't  need to sleep.)

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