Alright! I’m just going to crank this out. Let me preface this, though. Let it be know to all here “present”…….. I am grateful for Gregory’s life. I realize that he is alive. I realize that he is still here for me to hug and love. I have nothing but love and respect for the families that I have met who’s children have died. The fact that Gregory is still living does not diminish how difficult this is. Saying that everything is OK, simply because he is living, feels like disrepect to me. Disrespectful to his struggles, our families challenges and what we have been/are going thorugh. With that being said:
We are back in the hospital. We were discharged last Monday, went back to the water retreat and things started to get worse. He was yakking daily, not able to keep meds down. By Thursday he was yakking six times a day or more. I called the doc on Friday. He asked me to hold his G tube feeds and see what happened, call him in the morning. He wasn’t keeping meds down. Even with tube feeds being held. He was/is yakking on simply TPN feeds, though. Which goes through the IV. It bypasses the gut, yet I believe it stimulates the gut, too. Somehow. Saturday morning he started yakking after I talked to doc. He had asked that I give him a call that evening to let him know how the day went. It didn’t go too well. By 6:30 that night we were packed and on the road, headed to the ER.
Can you imagine what it is like to walk into an Emergency Department, 7:00 at night, on a Saturday, in the middle of winter, with a child who has recently had a bone marrow transplant and has ZERO immune system? No matter how quickly they get us back, it’s not quick enough. The got us back to the pediatric area and we had to wait in that area. No one approached us. After about three minutes (I was crawling out of my skin!) I approached the staff and started to explain our situation. “Hi. My son is a bone marrow transplant patient and………” I didn’t even finish a sentence. “We were just talking about you guys. Is this Gregory? You need to be in that room, right there.” THANK YOU!!!! They were ready for him and were sooooooooo good about being extra cautious with every piece of equipment they used and everything. It was awesome. After his assesment, blood draw, urine sample, exam, verbal history……… several hours later we headed up to the Peds Oncology Unit. After we got settled, bathed and hooked up to his IV pole, we finally hit the hay at 2:30am.
Gregory is currently not taking ANYTHING by mouth and only one med by G Tube. Everything else is going IV. We are giving his belly a much needed rest. We are ruling out every possible scenario one by one. He is not showing ANY sign of a viral/bacterial infection. Meaning he has no fever. Monday the surgeon ruled out whether or not the G Tube was placed incorrectly and causing problems. Monday we finally were able to obtain a poo sample. We need one to test for any gut bug. He hasn’t had one since Friday (a poo) so I was very happy to get one at 8:15 Monday night. I think we consult his GI doc next. Except……… I’ve been thinking about this like crazy. I think he has Pancreatitis. I’m going to talk to doc about it Tuesday morning. You would think that it has already been ruled out, except it’s rare in children. Yet the symptoms fit like a glove. *shrug* It’s worth exploring.
Gregory feels like absolute dog doo and is exhausted. When he has a nausea, pain, yak attack he is getting Zofran and Dilaudid. We are doing a complicated dance with his IV meds, too. I have to admit, I’m quite miffed about it. The problem is his Tacrolimus. The pharmacy here wants the tacrolimus in a glass bottle, with special tubing and infused in a lumen all by itself. Which only leaves one lumen for all his other meds and his 24 hour TPN. Which means that we have to unhook his TPN in order to administer his meds. Wait, his ampicillin is compatible with TPN, so that can be infused at the same time. (Whoopie. It’s a 15 minute infusion.) There is a possibility they are using a different brand of drug and it has different guidelines. Possibly. Except this is crazy. In order to unhook the TPN they have to decrease the rate before they unhook it. Which means…… never mind. This is entirely too complicated to put into words, right now. In Seattle Gregory had nine lines runing into his two lumens. Three of them were 24 hour infusions. TPN, Morphine & Tacrolimus. They never had to unhook them in order to administer the freight train of meds he had. Why is this a big deal to me? Every single time we access his line, it puts him at risk for infection. Right now they are accessing his line A LOT. I don’t like it. Especially if it can be avoided. How far do I push this? I’m not sure, yet. I don’t want to be labeled as “that” parent, but I think I should. For Gregory’s health and my peace of mind. Don’t know if I will, though.
I’ve had several conversations, lately, that I have looked back on and thought “Where did all that come from and none of it made any sense.” I am so immersed in the micro-cosm that is Gregory’s care and health that I cannot think of anything else. My brain is just mush. If I say something really weird and stupid to you, please don’t take it too seriously and give me a chance to redeem myself. I’m stuck in this spot where I can’t even see hope, joy or light. Not just for us, but for everyone. I’m negative and down right grumpy. I’ve also been pretty stubborn. I’m not feeling guilty about it, it’s just what’s happening right now and I’m ready for this Long Play to quit being a Super Long Play. It’s not going to happen, but I can dream.
I have simple dreams. I want to be able to tickle Gregory. Without worrying about pulling out his central line or g tube. I want him to come running at me from across the yard and jump into my arms for a big squeeze. I want to see him walk for more than two steps. I want to see him eat. I want to see him rough housing with his siblings. I want to see him glow. Gregory used to glow. Not so much, these days. We were talking about roasting marshmallows and making s’mores. He remembers making them at the water retreat. From the summer of ’08. We talked about making them again, this summer. I mentioned that he might be able to swim this summer. He immediately exclaimed “No! [as he put his hand over his belly] I have tubes! I can’t swim!” I told him he can swim with the G Tube, but maybe he will get to have his central line taken out and he can swim, then. I was going to ask him what else he would like to do this summer, but I was afraid to get his hopes up and not have them happen. I certainly did not expect to be where we are at now, at this stage of the game. I remember September. September was soooooo good. September was perfect.
When doc was here on Sunday we discussed what could possibly be going on with Gregory. His conclusion was heartbreaking, especially due to the way he said it. “He’s suffering the effects of his treatment.”
I hate Childhood Cancer.