Howdy, hippie chicks and groovy folks! These last few days have been, what you might call, challenging. I think we are finding our stride. This BK Virus sucks pond water. In a big way.
Sunday July 12: Platelets ~ 54, Hematocrit ~ 35, ANC ~ 492, Weight ~ 13.3
Monday July 12: Platelets ~ 55, Hematocrit ~ 36, ANC ~ 963, Weight ~ 13.2
Did you see Monday’s ANC? Wow. We need two consecutive days of an ANC of 500 or greater to be considered engrafted. Soon, I would think. It will continue to jump around like this, for some time.
Sunday: Fried Shrimp and Fried Clams. Painful peeing. Visit from Papa. Painful peeing. Balloons made of Gloves. Painful peeing. Monty Python and the Holy Grail. Painful Peeing. Discovering how great the fresh fruit platter is. Painful peeing. Trying to sleep. Painful peeing. Strangely intense nightime groin itch. Painful peeing.
See a trend? I kid you not, this kid pees every 3 minutes. Occasionally less frequently, but by and large, every three minutes. The medications for releiving his symptoms do not work 100%. He just has to suffer through it. Thankfully he is not peeing visible blood or blood clots. It does not seem to be progressing. We just have to wait it out.
Other than BK, he is fantastic. We switched his Tacrolimis to oral (nG Tube). It was a continuous 24 hour med. We are now at three times a day dosage. This medication is checked to determine the level of medication in his body to insure theraputic levels. Nothing more, nothing less. Now that he is on oral, a level will be taken Wednesday and his dosage could change. We have a nurse tonight that is pretty rockin’. We got busy and changed Gregory’s IV pole over to a single pole. We now has Two Large medication infusers, One Small medication infuser, a Kangaroo Pump for his nG feeds and a double line “regular” IV pump. The pole is much lighter and we now have what’s called a Lilly Pad on the bottom. They are these really cute platforms that sit on the bottom of the pole and allow the kids to sit on the bottom of the pole for walks around the unit. It’s pretty stinkin’ cute. Pictures to follow. I forgot my camera when we took it for a test ride, tonight.
For posterity, his current meds:
Normal Saline (24 hours/day at 10ml/hour)
Normal Saline with Magnesium (24 hours/day at 10ml/hr)
Morphine (24 hours/day)
Peptamen Jr (nG Feed formula 50ml/hour 20 hours/day)
Pantroprzole (to limit stomach acids)
Hydralazine (PRN for High Blood Pressure)
Prednisone (currently on a taper)
I think this is all of them. I may have missed one or two. When his ANC hit 675 the other day they discontinued the meropenem. Which was his antibiotic. It make me a little nervous not having an antibiotic on board. TMI ahead: He has not been regularly having bowel movements. Today he had two BIG ones. Very firm. The second one caused him a good amount of pain. He is still wearing diapers, thankfully. There was blood on the diaper. I think he may have torn something. Not a good area to have an open wound. I will certainly talk with the team about this, tomorrow. I know that he will go back on the oral Bactrim at discharge. Speaking of discharge…….. he has had weekly chest x-ray’s since admit. They have all been clear. The team decided today that we will discontinue chest x-rays, unless he presents with respiratory symptoms. We will have one at discharge. Yay!! Less radiation exposure. A bonus.
This entry couldn’t be more random. This morning at 3:45am, Gregory decided if he couldn’t void his bladder, he was going to void his stomach. He heaved out 100cc’s of formula. We are not quite sure why. His nG feed was immediately decreased and was gradually brought back up to speed throughout the day. He hasn’t had any stomach issues since. *crossed fingers*
Today was filled with lots of chatting and learning to be at peace with peeing every 3-6 minutes. Not joking. We will be chatting along and his little sqeaky voice exlaims, “Potty!” Which is my cue to help him to a standing position, pull down his drawers, ready the hand held urinal and prepare to receive his meager offerings. So incredibly meager. One teaspon at time. On top of it all, he has this incredibly intense groin itch that occurs only at night. He will dig, dig, dig in his sleep. The nursing staff has been incredibly excellent about helping me to step out for a few minutes, every few hours. There are volunteers on staff for this, but they are not allowed to help the kids go potty. Which means the nursing staff has to do it, if I’m not around. I know that this is probably their job, but come on! They would get NOTHING done. They have to glove up everytime they help him to pee. Talk about time consuming. This would be so much easier on both of us, if Gregory would not be so stubborn and use his diaper/pull ups. He is bound and determined NOT to use them. I totallyl give him kudos for this, but come on kid. Can we get a break? I am still playing with his nightime med schedule. We have been dealing with this since Thursday and nightime is truly the worst. In order to fall asleep he needs a morphine bolus and a dose of benedryl. He has been recieving another round of both, some time in the early AM. He doesn’t sleep for more than 45 min to an hour at a time. This is only ONE block of sleep time. The rest of the time he is still exclaiming “Potty!” in his sleep and we do the routine, with Gregory pratically sleep peeing. He and I have been having constant dialogue about using his diapers. I’m trying to get him to be OK with using them. *shrug* At least a girl can try.
He did get to participate in a very small group Physical Therapy activity, today. They did some kids Yoga that was so awesome. I love the imagery. I’d like to continue it with him when we get to the apartment. The PT gave me some recommendations. They also got to play with balls and a parachute. Gregory was animated, full of glee and giggly. It was awesomeness to watch.
The goal for the next few weeks is to get all his meds to oral. Which can all be placed through his nG tube. His counts continue to come in. He is making a few platelets. He tried to fever today!!! I watch him like a hawk and can tell when his temp is starting to rise. Once he shakes this virus and can get off the Morphine, provided nothing else comes up, we will be able to blow this popsicle stand and get our sassy selves over to the apartment.
Over the weekend I talked to the nursing staff about getting in touch with the naturopath on staff. While I KNOW that there is no natural cure for Gregory I KNOW that we can reduce is risk of secondary cancer via knowledge. Limiting and/or avoiding certain things and adding others. I picked up How to Prevent and Treat Cancer with Natural Medicine. It’s really good. I would recommend it to everyone. Knowledge is power. I guess the naturopath does a lot of work with the Oncology unit, but does very little with the BMT kids. The team was a little shocked that I asked to see him. They wanted to know why and I gave some lame response about nutrition and avoiding secondary cancer. The attending alluded that the nutritionist could help out with that and I responded with even more tripping over my sleep deprived tongue. The thing is this: The team has to make a referral to the naturopath in order for me to see him. Either my stunning charm or their humor in my request (“We’ll prove to her that she’s nuts!”) granted me a referral. It’s my understanding this guy is very busy. I should have requested it at the beginning, but my mind was on other things. Hopefully we will be able to see him before we leave.
Yesterday I received some very sobering news. The kid that was next to us when we were admitted (Lonnie, 21, 2nd relapse for AML, first BMT) died on June 29. We still have the tiger that his mom gave Gregory. I’d like to sign Lonnie and Gregory’s names to it, along with their transplant dates, and pass it on to another family, with the hopes that he remains the units BMT mascot.
Well. It’s time for me to start thinking about getting some shut eye. Things I need to remember: Peace, Joy and Stamina.
’til later, gotta jet.