We are still here at COH. Ryan will be here until Saturday evening or Sunday morning. They are being extra cautious with him. His doctor also felt it was best since I just had my ankle surgery last Thursday, and with Ryan in the hospital, a lot of stuff is done by the nurses and hospital staff (like giving him medication, prepping meals, etc). Another good thing about him being here is that his neuropsychologist has been able to work closely with him and also directly observe him during schooltime.
So today Ryan needed a blood transfusion (it's still being transfused as I type). This is the first blood transfusion he has needed since his transplant. His hemoglobin value is a little low, at 8.1, and because of the infection, his doctor doesn't want him running on a low tank of fuel, per se. She thinks that his hemoglobin dropped because of the blood infection. She said that it's not uncommon for that to happen. However, she also ordered an engraftment analysis to see what his engraftment looks like, in order to make sure that everything is okay. Code words for making sure that he is not relapsing.
So here we are again, on the roller coaster ride. Kinda sucks because I thought we were D O N E with blood transfusions and "other stuff." Pediatric cancer is the "gift" that keeps on giving. A lifetime of worry, no matter how positive your outlook on life is. Again, these feelings of worry are highly amplified after relapse and transplant. "Thinking positive" is easier said than done. I think I'm doing a good job, but would like to politely ask for no written or verbal reminders about thinking positively, because I know that's what I should be doing, but again, it's so much easier said than done. Most likely, and hopefully, yes, his hemoglobin is low due to the blood infection, but again, this is the gift that keeps on giving because forevermore, we will worry anytime anything is out of sync. I hate living in a suspended state of not really knowing what is really going on, but my hands are tied. I guess I just have to keep relearning this lesson about living in the moment until I get it down pat.
His doctor said that she put a "rush order" on the engraftment analysis, but it will still take around a week for the results to come back. Without the rush, it would be more like two weeks. She said that we will most likely be discharged and back home by the time that we have the results.
Today, his neuropsychologist observed him during school. He's been having MAJOR tantrums (I'm talking serious Damien Omen II style) over school, even worse than the ones he sometimes has at home, and so the nueropsychologist (Dr. Jeanelle) is now involved with trying to help us out with behavior modification techniques. We know he is just really pissed about being in the hospital again, but a lot of his anger is directed towards not wanting to do school. So, today, Dr. Jeanelle observed him and after his school session she said that she thinks that a lot of the resistance is due to his inability to focus and/or poor impluse control. That may or may not be due to all the chemotherapy he's had. It IS a side effect of chemotherapy, particularly in little kids who are treated with it before the age of 5. She also thinks that his inability to focus doesn't allow them to be able to adequately gauge what he is capable of doing because she thinks he is quite capable, but the struggle is over being able to focus and maintain his focus. His teacher is now using a chart everyday, and he's able to earn five stickers during his school session. It has definitely helped a bit. Today, he behaved really quite well during school, but I think it was because Dr. Jeanelle was there in the room and he really admires her a lot and wanted to show off for her. lol... We'll see how school works out tomorrow without Dr. Jeanelle in the room with him.
After school, we went for a quick walk down to the Bistro (he wanted peanuts and pop tarts and I needed some coffee!), and then he had a short group session with the play therapist, Toni. We also had a chance to briefly see his buddy, Sophie, and her mom. She is also an inpatient right now, but they aren't able to play together because she is still in isolation. :(
Following play therapy, we were in the room relaxing when he started acting up and being surly again. His favorite thing to do right now when he's really pissed off at me because I'm not doing exactly what he wants is to tell me in his scariest voice (which makes me actually struggle to not laugh or smile and simultaneously strangle him, lol), "MOMMY! I TOLD YOU TO ____________ RIGHT NOW!!! Do it right NOW or I am going to spank your butt! ONE! TWO! THREE!!!" and then he actually tries hitting me! So I've been taking away his toys, his blankets and pillows and leaving him alone in the room until he calms down (I can observe him through the window), so he's not really alone. Yesterday he also earned some spankings, which were not particularly effective. I find that taking things away and leaving the room works best, because when I stay in the room and ignore him, it makes him more angry and he starts yelling even louder. So that's what we've been dealing with this past week with him in the hospital. I know he really doesn't want to be here, but it is what it is and he has to learn better coping skills and to behave whether he is sick or not.
I left the room earlier this evening during one of his fits, and he promptly stopped shouting and fell asleep. When I stepped out of the room, the nurses were smiling in disbelief over his shouting and asked me if he was okay. I think that the Benadryl they gave him prior to his transfusion made him really tired and cranky. He's been asleep for a while, and right now I'm enjoying the quiet, but something tells me that this is the calm before the storm because he's not going to want to go to bed until after midnight now.
Well, that's it for today's update. I'll try to take some pics of him to post tomorrow. I want to thank my Aunt Debbie for coming by last night, Ro, Steph, Summer, Leigh and the kids for stopping by the other day after the Camp Ronald McDonald Walk for Kids, and would like also thank Hester for the nice visit this morning (it was soooo nice to finally see you now that you're back!).
Thanks for stopping by.
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