Before Mattie got sick, we used to spend our sunday nights getting ready for the upcoming school week. Not anymore! Last night perfectly illustrated how our life has changed. Before Mattie went to bed yesterday, we accomplished several things together. Such as a dressing change (which takes us about an hour to do), flushing of his lines, and also starting the administration of IV fluids. Mattie went to bed at 1am, and it was a feat to get him into bed by that time. Somehow he comes alive and wired as the night progresses.
Mattie and I had a slow morning. We then packed up and came to the hospital. It amazes me that even though we spend more time in the hospital than at home, it boggles my mind that we have to go through a formal registration process each time we come to the hospital. You would think they could streamline the registration process for those of us who are repeat and frequent customers. The person who registered us today was a sight to watch. She had no idea what she was doing, and instead of getting impatient, I just sat back, and watched the chaos unfold. Finally we headed upstairs. My parents helped us move in, which is a major event, of carting boxes and bags! As Mattie entered the floor he was immediately greeted by doctors and nurses. It is like being on the TV series, Cheers! Where everybody knows your name!
As we settled into Mattie's room, Mattie was greeted by Lesley and Whitney, and then Linda. Mattie was motivated to get to the childlife playroom. But the hospital had some sort of film crew and actors in the childlife playroom and the family room, filming the rooms and what was available in there. You have to wonder what the hospital administration was thinking? Why tie up the playroom for so long on a week day, when the children should have access to the room? Why not use the room on the weekend, when the room is off limits to patients? Later in the afternoon, I went into the family room to use the microwave. It was there that I ran into the film crew, who was trying to film a woman doing laundry. I don't know about you, but I don't select a hospital based on its laundry facilities! Maybe I am missing something regarding this promotional video of the hospital! I was just watching this unfolding in amazement, and I wanted to stop the photo shoot and say, "are you kidding me?!"
When I tracked Mattie down later in the afternoon, I found him in the childlife playroom with Linda. Linda received 700 new toys today, which were literally piled floor to ceiling in the room. Mattie decided to sit on the floor and help Linda sort the toys. See the photo of this below. Mattie was ALL business. Of course, you know Mattie couldn't come out of this sorting process without a gift for himself. He came back loaded with all sorts of things.
As of 9pm, Mattie started the infusion of Methotrexate. It took him about 5 hours today for his urine level to become more basic, above a PH of 7. So we shall see what the night holds for us. But one thing is for sure, the buzz around here is that Mattie is having surgery on monday. Linda and I talked about ways to prepare Mattie for surgery on monday. We even discussed setting up a mock surgery, which Mattie can perform on a doll. I had a nice conversation with Dr. Shad today as well. Dr. Shad is the director of the pediatric oncology program. I told her what some of my concerns were, such as pain management, and not knowing what to expect during the recovery process. I explained to her that if I don't know what to expect, I can't possibly help Mattie. She understood what I was saying, and is working on getting me answers, as well as sending up the pain management team at GT to talk with us. I want to thank all my e-mail osteosarcoma survivor buddies for clueing me into the questions about pain management. As next week draws closer, I wonder how on earth you explain to a six year old what is about to happen to him? I can't even grasp this myself. There is something so permanent about surgery. It leaves scars which further serves as a constant reminder that cancer is ever present in our family's life.We had a lovely visit from Susan S. tonight. Thank you Susan for the wonderful dinner. Mattie ate almost all the pasta you brought. He is very much looking forward to doing the triceratops dig tomorrow. You know how much he loves this! Thanks for the puzzle, halloween book, as well as the book for me.
On the electronic front, thank you Kim, Susan, Karen, and Brian Boru for the wonderful e-cards, and Coach Dave for the lovely supportive e-mail. Special thanks Brian Boru (by the way, Brian is a CAT) for the great gifts (stickers, hidden pictures book, dinosaur coloring book, and flexible puzzle). We also want to thank Rev. Rosemary at SSSAS for your lovely note and for letting us know that St. Paul's is saying prayers for Mattie. Next week will be a very challenging and stressful week for all of us. Please continue to keep us in your thoughts and prayers.
1 comment:
Hi!
I'm so glad that things are going fairly smoothly with Mattie's HDMTX. I was thinking about you guys and Mattie's fear of scans a little today. It is going to bee a serious pain in the you know what if Mattie has to be sedated for every scan from here on out. Emma has to have scans every 3 months even now. I remember a couple of times when she needed to be scanned in an emergency when it would have been neither safe or practical to sedate her before hand.
I was wondering if maybe the child life staff could help with the scan issue. A good place to start would be with a CT scan. These take only a few seconds and are totally painless. They also are the scan Mattie is mostly likely to have to have in an emergency situation that has not been planned beforehand. Emma has had to have emergency CT scans on several occasions. I wonder if the staff could arrange for Mattie to visit the CT room when he was feeling well and wasn't going to be scanned that day and knew it- just for a few minutes so that he could see the control room, maybe watch one of you get strapped in to the machine and have a fake "scan". Maybe even push a button or two, meet the techs, etc.., and then leave. You could then with no pressure give him the option of doing his next CT awake without being sedated. Literally it takes just a few seconds to do. If he still wanted to be sedated, so be it but at least you tried.
If he successfully did a CT scan without sedation, you might be able to try the same thing with a bone scan. This takes longer but uses a similar appearing machinea nd does not hurt. In Emma's hospital, she could watch a video while being scanned. This was great because I used it as an incentive. I bought her a knew video just for the scan and she got to watch it for the first time during the scan. It really worked for us. Emma never had to be sedated for CT or Bone scans-just MRI's and pretty much everyone is sedated for those.
Just some thoughts--
Lauren
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