brycebelt.net Blog

Day 29 Interim Maintenance

May 28, 2008 on 4:46 pm | In Uncategorized | No Comments

When we got to clinic everything seemed to be going well. I annoyed the doctor asking a million questions and Bryce told me to stop talking.. LOL The doctor got a good chuckle out of that one. But I did find out that his treatment plan for next phase will not be changing. He is scheduled to begin that one on June 24th. He started back on the dexamethosone (steroids) today for 5 days also.

So we head to the back where they access his port to give him his vincristine and I ask Bryce do you want me to sit with you or are you going to do it by yourself. He opts to do it by himself, hops in the chair and calmly waits. She sticks him and he SCREAMS. He has not screamed like that EVER when he is being accessed. She tries to flush the line and it doesn’t flush. I am freaking out and am saying what’s going on this isn’t like him to scream. She removes it and does it again. He SCREAMS again and again the line is not flushing!! I am nauseaus at this point and thinking that there is something wrong with his port and my heart is breaking because he is in pain. She finally calls someone over and she said you are on the side of it. The woman she called over removes it and puts it in again, he screams again but the line does flush. So I guess she was just sticking a 3/4 inch needle into his chest, which really upsets me. He goes through enough and tolerates everything unbelievably well. He shouldn’t been in pain needlessly. You can feel his port easily, it sticks out far. It seems like it would be hard to miss!! Okay so he gets his vincristine (chemo) and then over to the hospital for his LP with Methotrexate (more chemo). As we were leaving he says the nurses are nice and waving by to everyone and is happy as can be. I think maybe I was more upset than he was. At least I hope, he has to be accessed A LOT over the next few months and I hope he is ok with it still.

Okay so we get over to the 7th floor and register for OMO. They say its full and that we are going over to the other side. The other side is 7 west which is where he stayed when he was first diagnosed. So we were familiar with the area and even though we were in the back the rooms were still pretty roomy. They had him a crib set up and he always uses a bed but we made it fun and he acted like he was an animal at the zoo. He also took the gown they had on the bed and was dropping it out and would “reel” it back in like he was fishing.

They come in and put him to sleep and start the procedure. When he’s “asleep” he’s eyes are still open, his eyes usually bounce around but he’s still and calm. They are doing the procedure and a tear runs down his face. That has never happened before, I wipe the tear from his face and talk to him. Then he lifts his head and another tear runs down his face. Breaks my heart and I HOPE that he didn’t feel anything, but I think he may have felt it. They give an amnesiac so he won’t remember it if he did, but still. I guess after the port access, it was just a lot for one day.

After his procedure he is to lay flat on his back for at least 30 minutes, preferably an hour. It was 25-30 minutes and he said he needed to potty. I didn’t put a pull up on him this time, as he has never needed it so far. The recovery nurse hits the call button to ask for a urinal and we wait a few minutes but nobody responds. We are back in the old rooms so were not even sure they are working. He is still complaining he needs to go and I had a pull up with me so I go ahead and change him out just in case he can’t wait. He continues to complain and really needs to go so after a lot of convincing that it is okay to go in his pull up he finally goes. I clean him up and put his other clothes back on. Several minutes later they respond to the call light and ask if everything is ok. I said yeah we are now. It had to be at least 10 minutes!! But I guess they were super busy, the board when we came through looked pretty full.

All day everyone was saying he was the best patient ever, and the nurse who came in to de-access his port asked if he liked superman. Bryce said yes and she said I think I’m going to call you superman. I thought that was cute because I call him my superman too. That’s why I did his myspace page in superman.

So we are finally done for the day and Bryce is asleep within minutes of getting in the van. I stopped at McDonald’s close to our house and he woke up hungry. We got home around 2:00. Wasn’t one of our better days but he’s home, he’s okay, and that day is behind us now.

At the clinic

My little monkey in the zoo

Laying flat after his procedure