Today we are going home. This morning we walked over to Cheo...and we talked to the doctor. She doesn't think we should go home.....not till we reach 100 days after transplant. It didn't matter what I said...she feels very strongly that we should stay close to the hospital. She told us a story of another child who lived 2 hours from the hospital....and got an infection after her bone marrow transplant.....and died. She lived too far from the hospital.....so the doctor couldn't and wouldn't give her permission for us to leave. The doctor does agree that hospitals are crawling with germs...it's not safe there for my grandson.......so she wants us to stay at Ronald Mcdonald House. I understand the doctor's fears. We live 1 1/2 hrs away from the hospital.....so yes....she has a real concern....but the other options are not acceptable. Her words scared me.......but what I read in the papers scared me a lot more. If the doctor's intentions were to scare me.......it worked. I'm deathly afraid of what could happen.....and every day I walk on eggshells......I would put Martha Stewart to shame.....the way I clean and scour every day...and make everyone wash their hands for 3 minutes a gazillion times a day....but I'm doing what I feel is best for my grandson.
I told the doctor I have kept my grandson safe from all harm since he was 2 years old......and I don't intend to stop now. His safety takes precedence over everything. I have no control over visitors at Ronald Mcdonald House......which they have a lot of......groups of people touring the house.....cleaners....teams of volunteers who cook for families.....and right now the house is under renovation...so there is drywall and insulation issues as well. Unless I had a self-contained apartment with cooking facilities, tv and cable....I would be endangering him there....and that's not possible. The hospital has no funds for this and neither do I.
Finally..... the doctor let us go home.....after I signed a waiver.
I'm going by my gut......I feel that I could keep my grandson safer at home....there are no visitors to my house.....my grandson can go from the livingroom to the dining room and to the kitchen....he can sit on the deck and enjoy the view, he can ride his bike every day......he can enjoy his movies from the privacy of his bedroom......I can control the cleanliness........but I can't do that at Ronald Mcdonald House. And of course...there is a shortage of beds at the hospital....so that's not an option.
This past summer......3 teenagers died at the General Hospital here in Ottawa......after their bone marrow transplant. One of 13, 15 & 16. I knew the girl of 16.....and my heart breaks for the mother and the pain she is going through. These 3 kids caught a virus at the hospital after their transplant.......and their immune system wasn't able to fight it. The 3 teenagers that died were all in their early teen's.....and they died in July and August of this year....while we were in
Toronto at Sick Kids. We chose not to have the bone marrow transplant done in Ottawa......and I'm really glad we did.
Toronto at Sick Kids. We chose not to have the bone marrow transplant done in Ottawa......and I'm really glad we did.
I'm hoping that I can keep my grandson safer. I can't control the environment at the hospital and neither at Ronald Mcdonald house.....but I can control the cleanliness of my home.......and make sure no visitors come to our house till they decide he is safe enough to go to school. For the next 6 months he will be tutored at home.
I also believe that my grandson's mental and emotional health are just as important as his physical health......and if he is happy at home.......he will heal much faster from his ordeal. Let's hope that I'm right.
6 comments:
Wishing him the best of health and recovery! We know you can do it, sending out prayers!
Hang in there! Your logic makes a lot of sense to me. I'm so glad that you two are going to go home. Hospitals are a horrible place to be sick. :\
Get some rest, the two of you surely need it.
lindamry
I can fully understand where you are coming from about how you can control how clean your house is over Ronald McDonald house. Our thoughts and prayers are still with you every day until Tayton is completely well. May you have a safe trip home and may Tayton feel so much better once he gets there.
Home is the place to be. You made the decision from your head and your instincts, there is no fault to be found.
May your laughter be joyous, your hands never too tired to clean, your eyes open to the steady improvements, your ears open to their needs, and your heart filled with being home with both grandchildren.
I'm happy for you all. I've been wondering where you have been since you didn't blog for a long time. I think you are right about the cleanliness thing. Last winter in Florida, the Emergency Room doctor didn't want to look at my carotid incision, because of the number of germs in the ER. He was afraid that if he opened it, I would contract some really bad germs in a very vital spot. If I was vulnerable, just think how dangerous RMH would be for Tayten. Take care and get better soon, Young Warrior.
I hope all is going well. Haven't heard a peep since going home. You are in my thoughts and prayers, as always.
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