This post if for everyone who has called, concerned and offering help. I have been way too busy to call anyone back. So here is what has happened...
Friday May 22nd: A cyst burst and Bruce started bleeding. This is a common occurance with his PKD. He had one-sided kidney pain on Sat the 23rd. He spent friday, sat, sun, and monday in bed most of the time with nausea and vomiting on and off. On Tuesday He went to Dr. Russo's office (nephrologist & the kidney institute with Mrs. Claus his dialysis nurse). They thought he was getting dehydrated from the dialysis because his blood pressure had dropped. They had him stop blood pressure and diuretic medicine for a day or so and he seemed better. They sent him to a Urologist on Thursday. He was feeling bad that day and was back to throwing up. The Urologist looked and saw that there was blood squirting from the kidney into the urethra and gave him a prescription to stop the bleeding because for some reason he wasn't clotting. I ran to 3 pharmacies when he got home from dr. at 6pm. No one carried the medicine, so it was ordered for next day - Friday the 29th.
We had a Disney trip planned with my parents for that day. We had free tickets so Bruce chose to stay home and we left at 9am. He went to Dr. Russo again that day. Mrs. Claus checked his hemoglobin because she thought he was maybe bleeding too much. They couldn't get the result back that day though. She said he should go to hospital because she was worried. He decided to wait to tell me this at 6pm when we are on our way to Downtown Disney. Tom Mizwa a long time friend and business associate drove to get his medicine and brought it to the house. Bruce said he wanted to give it a try before going to hospital. I was worried so kept calling him. At 9pm I told him he needed to go to ER, so he called Tom to take him. Roy came over and cared for Luna and made sure Bruce was ok until Tom got there. Tom and his wife Robin stayed with Bruce until about 1am getting him settled and Tom came back and stayed with Bruce in ICU. I was on phone all night and did not sleep at all. Bruce told me to stay there and not ruin it for kids so I tried to do so, but the whole time we were in Magic Kingdom i was on phone trying to help Tom because the hospital was clueless about his type of dialysis. Roy had to help out with Luna and getting dialysis machine from our house to hospital. Thank God for Tom and Roy:)
We found out that his hemoglobin was around a "5". He is normally a "12". A "5" means you should be dead. If he would have gone to sleep like he was planning on doing, he would have gone into a coma. He got up to let Luna out and fell over... so thank God for Luna :)
Tom was stuck dealing with everything because Bruce was completely out of it and drugged heavily, so I needed to come back but driving home for 3 hours at night was bad idea since i had no sleep and had taken migraine medicine all day. I also did not want to freak out the children so I was trying to at least be there with them for awhile so they didn't think something terrible happened. I tried to get a rental car brought to me but that was not working beacuse it was late in day, a Magic Kingdom employee drove me in a Disney van back to my hotel and my friend Daniel drove all the way from Tampa to pick me up and take me home. That was a 4 hour drive for him and then he drove back home for 2.5 more hrs. Thank god for Daniel :)
Bruce's dad drove all day long from Nashville and got there around midnight I think- things start to get blurry about that time. His mom flew into town on monday. At first they thought they were doing surgery to take out kidney on monday. Sunday morning they said they decided that he was in no condition to deal with that massive surgery at this time and wanted him to get better and schedule it later.
We have spent since Sunday trying to get him better. His hemoglobin has stayed in the 8 range so the bleeding stopped. He moved out of ICU on Monday evening. His parents stayed with him until last night, I have been able to be there mostly during day but tomorrow that is going to stop because I have to get back to work, I have to take care of kids and I think he is well enough to be alone. Basically someone has to ask for something a couple of times or it never happens. Even if the Dr. orders it, they don't do it unless we remind them and it's always hours after it was supposed to happen. Bruce is alert enough now to do that himself as long as he is not feeling the nausea.
His dialysis has not been good, so toxins are built up. He is very weak and throws up at least once a day. It's a day by day thing right now. The earliest he could come home would be Friday and that is if he really improves tomorrow. He will stay there until they can get him stable. I took Beck to see him today which helped both of them.
I am truly thankful to everyone who has offered to help and said prayers for him.
I will try to keep this updated now that i can breathe....
2 years ago