Thursday, October 16, 2008
Friday, September 19, 2008
Toronto at Sick Kids. We chose not to have the bone marrow transplant done in Ottawa......and I'm really glad we did.
Thursday, September 4, 2008
Mr. T continues to do very well. His counts are coming up all the time. It is very difficult keeping him in his room. He contstantly wants to go to the kitchen to eat or to get snacks. I have asked the doctors to rethink their decision....as I can't control the level of cleanliness in the house as there are too many families staying here......while I CAN control the amount of visitors to my house. They will let me know next Monday if we can leave to go home and come back once a week for his blood work. It may be twice a week when there are other clinics to attend. It will be really great to finally get home.
Monday, September 1, 2008
Sunday, August 31, 2008
I don't believe this!!!! On Friday, when Dr. R came to visit us...she mentionned vaguely about '100 days after transplant' we need to be in-hospital. I replied..."WHAT DID YOU SAY?? Don't even go there!"....and with that she said....'Well, tomorrow Dr. B will be on and she's in charge of transplants so she is the one to ask.'
We came here to Cheo because we were told that it was wise to make sure that Mr. T got a clean bill of health....and what was another week?? maybe only 2 or 3 days...and we were fine with that. We were told if Mr. T did not need platelets or blood products...and his counts were good....we could go HOME and come to clinic twice a week.
We had plans!! Mr. T wrote on MSN...(I'll be home in 3 days). We were looking forward to going home....and everyone was looking forward to us coming home! Hubby and Uncle have been very busy in the past 3 weeks. They removed all the carpeting from my house and put in hardwood floors...better to control the dust & germs. They painted all the upstairs and freshened up the house. They worked non-stop in preparation of our coming home.
My granddaughter is so happy that finally we'll be home. She tells me everyday how much she misses us. It's been a very difficult 5 months for her.
But the flippin' plan has changed.....
When Dr. B walked in...I said.."I'm glad to see you....as YOU are going to tell us what DAY we'll be going home this week."
Then the fun began.......first she told us...that NO...she wasn't in charge...It was Dr. R that was in charge....and we both looked at her and said......"DON'T EVEN GO THERE - Dr. R said YOU are in charge. It's very confusing if the doctors don't know who's in charge.
Yes..I was upset...very upset and I let them know that I didn't appreciate being told at this late stage of the game that we would have to stay an additional 2 months. They believe that Mr. T is high-risk for infections....and seeing that we live 1- 1/2 hrs away......if he should get a fever...it would really soar before we could get here and Mr. T would end up in ICU or worse.
I understand their concern.......I understand there is a chance of this happening....I understand that Mr. T's health takes priority........BUT WHY THE HELL DIDN'T ANYBODY TELL US BEFORE THIS???
Why did they pick NOW to tell us? If they would have told me this last month...I would have prepared mentally & emotionally for it.........and so would Mr. T.
Mr. T was so excited that when his Uncle drove us here from Toronto...he told his uncle to bring home all his play systems and games...as we would be following shortly. He sent everything home in anticipation of the big day. Even when we got here...the staff asked how long we would be here...and we replied...oh, just a few days for a check-up and we're on our way. Nobody told us different. We were led to believe that if Mr. T was not attached to any pole....we were on our way. Everyone encouraged our thinking and beliefs. Even the interlink nurse said she would make sure to get in touch with the tutor for this week.
Well....to say I LOST IT........is putting it mildly! I let the staff know that there was a 'complete lack of communication' here.......nobody was on the same page.......hell...they weren't even reading the same book. There is no excuse for this! On top of that....'to be passing the buck' and not taking ownership...blaming each other....not knowing who was in charge.....is too much!
Then one of the Dr's said..."I don't like it when you raise your voice at me....so keep it down!"
Whoa......I told him....'Too damn bad what you don't like....we don't like being told one thing...and now that's changed. I am damn upset and I won't apologize for it. When I get angry or upset...I get louder...and that's fine too. I'm allowed to be angry...I'm allowed to be upset....and if it bothers him......too damn bad! I'm not in a popularity contest here!
We were led to believe if everything went well......and it did.....and if Mr. T did not need platelets or blood products...that we'd go home and come twice a week for check-ups. Nobody told us different....up till this week....when it finally occurred to them...that I live 1- 1/2 hrs away.
At this late stage of the game....we should have known what was expected of us....everybody knew our plans and nobody said a thing.....not till we asked what day we were going home!
As it stands now....we plan to be in-hospital for another week. Then we will stay at Ronald Mcdonald house for 2 months and just come here twice a week for check-ups. Mr. T is not happy about this. He was told that he would have to stay in the room at RMH...no socializing...he would have to eat in the room as well. We would get his Uncle to bring up his game systems and games and television set. He'd rather stay in the hospital...and have people come in and out of the room...and go to the playroom...but thats not feasible. They need the bed here. For Mr. T...this would be like going from a jail cell to solitary....and I'm very upset for him. He had plans to go fishing and getting his hunting licence. All this will have to wait.
Friday....Mr. T had an x-ray done...they noticed a small spot on his right lung....so today we went for another x-ray. We don't know the results yet.
T's counts continue upward....his appetite is back...he's eating and drinking well...and for this I'm truly grateful.