*SIGH* Here I sit, in the hospital, with Gregory catching a few desperately needed winks. The last few weeks have been very trying. I have felt the need to write, but not the need to share. I feel like a broken record. Tired, lonely, frustrated. Why share what’s already been said. Knowing this was going to be a long haul and living through it are horses of a different color. Then with all the stuff that comes with Christmas, I just didn’t feel like raining on everyone parade, including my own. I also have not felt the need to document the last few weeks. I really do not want to remember some of the stuff that’s been running through my head. I’m spiraling, again and would really like to have a reset button.
We were able to get Gregory’s G Tube placement scheduled for Wednesday, December 23. We showed up to clinic at 8:00am, Gregory received his meds for the morning via IV, we checked into surgery at 11:30 and they took him back around 1:15. They were only able to do a GI scope with biopsies. A colon scope was not ordered or performed. His bone marrow aspirate was not performed, either. When planning this, we failed to take the holiday’s into consideration. The test for his bone marrow aspirate is performed by the clinic in Seattle, (Seattle Cancer Care Alliance). With an aspirate on the 23rd there was not an availibity to run the test due to the holiday schedule. Considering that he really didn’t need the BMA, it’s no big deal. It was a case of, he’s going to be sedated, let’s get one done. There was no indication that one should be done. I was able to join Gregory in recovery around 3:00. They used a different sedation agent, I need to find out which one. They told me and now I cannot remember. It was a heavier sedation and he struggled to come out of it. He had some pretty heavy respiratory issues. He wasn’t getting enough oxygen and was grunting with his breathing. He received an Albuterol treatment and had to wear an oxygen mask, for quite some time. We went up to our room around 4:00 and he had a rough night. He had two doses of Morphine and it just wasn’t keeping his pain under control. His temperature started to go up. His heart rate and oxygen were struggling, too. They changed his pain med to Dilaudid and that seemed to take care of the pain. For the time being. He needed more oxygen, too. Since we were admitted for surgery, we were under the care of the surgeon. When it comes to temperatures rising and Gregory’s incredibly comprimised immune system, an elevated temp is not a good thing. The doc started him on Vanco and Fortaz as a precautionary measure.
This procedure has hit him like a ton of bricks. I wasn’t prepared for him to have such a hard time. He laid flat on his back for nearly three days. Then yesterday his right foot really, REALLY started to hurt him. They think it’s neuropathy related to his tacrolimus level. He takes fluconazol, quite frequently, for oral thrush. He’s been on it for two weeks and it has a tendancy to raise the level of tacrolimus in his blood. The plan is to discontinue his Fluconazol and see how he does. Due to all these antibiotics he’s been on, I’m sure that by next weekend the thrush will be back and we will do it all over again. His blood pressure has also been slowly increasing. We started G tube feeds Thursday night. At 1/2 goal rate. He is still receiving TPN by day. Friday, he ralphed mid day. Last night we ran G Tube feeds again, worked our way up to 50mls/hr and he had another pain episode. Not knowing exaclty where his pain was, we backed off on the rate of his feeds. The long and the short of it, I’m sure we will remain inpatient until at least Monday. Due to his pain in his feet, he is not able to put his weight on his feet. He has not walked around since Wednesday morning. He is sitting up, moving around a bit on his own. I have not been able to cuddle with him, though. Any movement jars his tube and causes him pain. Instead I sit in the reliner as close as I possibly can and just be with him.
This admit has just been really crazy and mental screwy. Then throw Christmas in the middle. It has been nice to be here over Christmas, though. There have only been four of us on the unit. The balance of the hospital traffic has been really slow, too. Which for us means less exposure to anything creeepy crawly. This post is all over the place, not very helpful and full of technical stuff that I haven’t defined. I know there are many folks anxious for an update. I’m just slamming this one out.
Basically: Gregory is OK. He’s recovering. Slowly, very slowly. He’s had some side effects and we are working through them. His heart rate was around 180-190 for quite some time the first 36 hours. His temp made it to 99.9. Which is high for him. His respiratory stuff seems to have resolved. We just need to start getting him to take deeper breaths. His quick, shallow breathing has caused him to have some fluid retention and you can hear it when he coughs. He is having neuropathy and we have a plan of action. He received IViG and IV Albumin, today. We are working on getting his G Tube feeds to goal. The wound looks really good, though. His hematocrit dropped to 31. Not transfusion level (far from it) yet it is going to take some time for him to rebuild it. He’s tired, he’s in pain and just getting through everyday.
Bone marrow transplants are hard. (As is any kind of major medical treatment.) I really hate Childhood Cancer, right now.
Post Surgery. Sleeping it off.