What Doesn’t This "MONSTER" Do?

August 6, 2006 at 12:36 am

This is the question I asked myself all day yesterday.

Hello Family! This is the first time I have had a chance to let you know what is going on with Billy.
Life- flight got him to the other Hospital with no problem.
The nurses there, went right to work getting him cleaned up and had me wait until they did. They got him stablized and let him rest for the rest of the day while they rewrote alot of things on his chart. Medications and such and making sure he was comfortable. The rest of the day was spent just making sure he was comfortable and informed.
Day two I met his nurse who is a young man that has been very well educated in GBS. Billy is his fifth patient. He is very informative and on top of everything concerning Billy. He even told me about a book that was a part of his class when they were studying and learning about GBS, ( The Patient In Number 10 ) I am looking for that book. He explains everything from procedures to medications that are given to Billy and why. I also met with the Neuropherisis Doctor who had consulted with Billys Neurologist and let me know that Billy did not need to wait one more day for his treatment of Plasmapherisis. The treatment began that afternoon and I got to watch some of the procedure. Billys nurse stayed right with us and noticed that PVC’s were coming up on the monitor. So he immediatedly did a blood draw to be tested for electrolytes in case they needed to give Billy an IV of Potassium and Magnesium. He explained to me his concerns and how it could even damage the heart. Billy having a weak side to his heart gave even more reason for concern. Anyways his test turned out alright, and he excepted the treatment well. I stayed overnight to make sure he was alright. His stats did go down once after they turned him but they came back up. They were having trouble with his lungs again and thought there might be a mucous plug. His nurse said that they would just have to be a little more diligent in the suctioning. Eventually it would clear.
Day three, was a very emotional day for me. Billy was having trouble moving his head and being alert at any one time. Also there was some concern that there might be blood clots shooting into his lungs from his legs, so they did an ultrasound. Later, I explained to his nurse my concerns of Billy being over medicated. Then his nurse explained to me how far this “Monster” had to go before reversing. And how at this point they wanted him to be as pain free as possible. I was numb. His Neurologist had never explained, what I call the Romeo Symptom. If you have read Shakespears story of Romeo and Juliet then you remember the death scene. All I could picture was Billy, crying for help and trying to get someone to hear him, and not even be able to talk with his eyes. I wanted to scream, throw something, beg God to please give me some kind of strength to reach in and take this Monster out of Billy. I held it all in. I went to the Chapel, they were busy. Then I did the only thing I could think of, I stood at Billys bedside and prayed.
Of course by the end of the day I was totaled. When our daughter and grandchildren came to visit I had to explain to them what to expect and my emotions toppled over. I just could not hold back anymore. I broke completely down. Our daughter, God Bless her heart, tried to comfort me. Then she went in to visit her daddy and tried not to cry. She then decided to take a few personal matters into her own hands. She alerted the nurses as to some of the upsets concerning Billys family and one of his sons. Then she told me that I was to focus on Billy and stay on top of these Doctors. She would handle all phone calls from here on in and if the family had any questions they could contact her. And today she proceeded to let his family know that this was how it needed to be.
Day four, Billy has been off his sedative since 1:00 a.m. this morning. The test to see if there is any change has shown there hasn’t been. Billy’s vent tube has been in for 13 days. The Ears, Nose, and Throat Doctor has explained the dangers of this. And has explained why and how a triech needs to be done on a day that he is not going through treatment. Which will be in the morning at 8:00 a.m. And although it sounds cruel, I explained to Billy what needed to be done. I keep nothing from him and I would rather him hear it from me.
I have also brought to the nurses attention the fact that his Neurologist went on vacation without letting any of the other Doctors know that I want communication. So I, with the nurses help, have called for a consultation with everyone involved in Billys care.
Today, I am calmer. Maybe crying and breaking down is what you need to do to help make you stronger for the life you are fighting for. Your focus does need to stay on that one person.
So when I ask myself, What Doesn’t This “Monster” Do? I also ask myself what it does do?
Not only does it destroy, it terrifies you, puts you on an emotional rollercoaster, educates you, tests your strength, your love for life, your faith in God and the one you love.
We all grew up with the teachings that attacking any one or anything from behind was the cowards way. But with this, how do you attack something head on that holds the fate and the face of the one you truly love and care about? You can only attack it from behind and hold onto your faith.
For now………………..God Bless All Of You………………Piper