We both slept as well as you can in the hospital, I had a hard time falling asleep..but I always do. The tech came in to put in Tony's PIK line, this goes into his arm and a small tube goes through his arm and ends right at the top of his heart. They get blood samples from this and give him fluids, meds, IL-2 etc through it. It has 2 ends so he can get 2 things at once. WELL they put it in and left. Then the Xray team has to come and do a chest xray to make sure it is in the correct position, it wasn't. The tech came back and pulled it out some. Did another xray. NOPE not yet...the nurse pulled it some more, they have a certain amount now measured. Another x ray..FINALLY. THIS is why they bring him in on Sunday so they can get everything done, blood work, etc then concentrate on the pik..because if that isn't in and x rayed by 1:30 he does not get his IL-2 at 2:30, he would have to wait until 10:30. He got his first dose of IL-2 and very gradually started to feel bad, just really bad. He was very anxious and fidgety. Very anxious...he just couldn't sit still and was getting cold. I've been here through all of this, and I have never seen him so strange. He was nauseous, and just sick. I sat on his bed, put my hand on his back and just prayed and prayed. I sent a text asking everyone to pray at once..we need some attention here!! lol Then I had the nurse bring him some Demerol...that always seems to help the rigors, and sick anxious feel. They were giving him 50 MG and the last time he needed more after 2 hrs and they said no. Then I talked them into giving him 25. So we made a deal against IL-2 protocol. Can they try to give him half at first and see if it works because he was having breakthrough rigors after 2 hrs. Then give him the other half if he needs it again. Well it worked tonight. Half a dose helped...alot. Now of course he isn't urinating because IL-2 stops some organs from working properly, and his creatinine is too high. They are trying to get everything under control, it is a big balance game...but he is for sure getting his second dose tonight at 10:30..yaaaaay!
The MICU manager came to apologize about some issues from last week, she is going to talk to her nurses and make it a point to get us a room with a shower when we move down there tomorrow or Wednesday. She is going to discuss how "WE" need to not feel unwelcome when we get down there and IL-2 is different then anything they have ever seen. Tony is NOT an invalid and should not be treated like one. I am not leaving Tony and they need to accept that too. I'm not a burden but a very big help to Tony and the nurses. The pharmacy boss and the tech that messed up last week also visited our room today to apologize about the delay in getting the IL-2 last Friday. She informed her tech how important and stat that IL-2 needs to be made and it must never be late.
Then we had several nurses stop by just to see how we both were doing and to say hello. Finally everyone here seems to want to make the IL-2 process "flow" the way it should. The next cancer patient might have a better,more comfortable time here. I hope so. Jessica was Tony's nurse today...she is our favorite!! She offered to bring me food, or milkshake or whatever I wanted...she is our buddy!
I didn't even want to leave the room today Tony felt so bad, so I ate his hospital food for lunch and dinner and was here when Tony needed me. WOW I think I covered/uncovered/covered/uncovered him NO less than 225 times today!! no joke!
I keep saying to him, "whatever you need baby, that's why I'm here...it's ALL about you"
I keep saying to myself.."this too shall pass, stay strong and keep smiling"
I know God answered some prayers today...keep them going please??? I'm going to watch the rest of the game and visit with Tony for a few and wait for his next dose. Thank You Jesus for giving me strength today...and for prayers answered. Amen
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