Tuesday: Platelets ~ 53, Hematocrit ~ 32, ANC ~ 660
Wednesday: Platelets ~ 57, Hematocrit ~ 30, ANC ~ 806
Thursday: Platelets ~ 65, Hematocrit ~ 29, ANC ~ 1330, Weight ~ 13.4
His ANC is steadily increasing, his platelets are holding and took a slight jump and Hematocrit is dropping, only slowly. His activity level has been pretty low. Kinda hard to start/finish anything when you are peeing every 5 minutes.
Yesterday we received permission to leave the unit. This was a big event. Yesterday we reached the six week point. We were admitted on June 1. I've had a chance to get out now and then. I can't imagine what it must be like for Gregory, who has been cooped up in this room. These four walls. Especially with his age. Developmentally he lives in the moment. Moment to moment.
He must wear sunscreen everyday and they sent some up for him. We got all prepared to go OUTSIDE. Sunhat, camera, portable urinal, portable hand gel, puke basin, sunscreen and IV pole. Since he is on a Morphine drip for the BK pain, he is not able to be disconnected for great deals of time. We have to save his disconnect time for baths. We headed out of the unit and to the elevator. He did not want to sit on the lilly pad (on the bottom of his IV pole), instead he wanted to go in the Hip Hammock. Nice and close to me for this big adventure. Once we navagated the elevator and the bumpy stone flooring, (oh yeah, and the automatic sliding doors and floor mats) he was outside. There is a little water feature with a purple hippo. He hung out with the hippo for a few. We then headed back inside, hit the gift shop and got a Root Beer form Tully's. All this with several stops to pee, too. My long-time friend, Lena, stopped by to see us and found us in the gift shop. There was a book I was looking for, so we headed up to the fifth floor resource room to see if they had it. No luck on what I was looking for, but I did find a few others. Lena sat and read a book to Gregory. She found a bunch of books from the author of "If You Gave A Mouse A Cookie". Gregory loves this book and the one's that Lena found. It was time to go back to the unit. All of the parent services are on the fifth floor. Laundry, showers, resource room, cafeteria. It must have been about 2:00. This is where I started to get a little nervous. The elevator is busy on this floor. Having Gregory in a confined space with many people, even for that short of a time, makes me terribly nervous. It's also a big no-no. We waited until the masses went down. Things seemed to pick up for Gregory, when we got back. Call it coincidence or a breath of change, Gregory has been getting better and better, ever since. The frequency of his need-to-pee has been decreasing. His pain is barely noticible. (remember he is still medicated quite well, too) He started itching not long after our return to the unit and received a dose of Benedryl. It knocked him out for a much needed nap. He slept for a few hours and was so happy, chatty and playful. The frequency continued to decline. He received benedryl only at bed time and with the exception of having to pee when being disturbed (vitals and blood draw) he has slept through the night. *huge sigh* I do not like to hang my hat on a star, but I THINK he is on the mend. Quick like. The challange would be to start backing off on the Morphine. This will certainly be my first discussion with the team. It's the only thing (almost) keeping us in this room. We need to get his belly under contol, too. We only have a few meds that need to be switched to oral and we are supposed to start condensing his feeds. He is currently getting "fed" 50ml/hour for 20 hours. The ideal would be to have him hooked up for a couple hours, a few times/day. Which means bigger feeds. I don't think he is ready. He heaved Tuesday, mid afternoon, before we unhooked him for his four hours. He started to get nauseaus yesterday, right before he was unhooked. I took the liberty of unhooking him myself and we averted any ralphing. This morning he heaved at 3:45am. Not a large one, though. This makes me a lttle nervous. Gut GVH is a real possiblity. I'm calling it "tired tummy". He still has not taken much more than a few bites a day. He has tons of interest in eating, just not the gumption to do it. I knew, heading into this, that this would be our biggest hurdle. Gregory has never been a big eater. Only time will tell how this will shake out. I'm hoping that once we get to the apartment and he gets to have "regular" food, this will change.
I'm also hoping that we will get a "pass", soon. Which is just permission to leave the grounds for a few hours. I'd really like to take him over to the apartment, so he can check it out. I'd also really like to have him unhooked for an extended amount of time. We are still on the Prednisone taper and I found out that it will continue until AUGUST 29. Holy cow! It takes a long time to taper off that stuff.
Today? Shower and laundry. I'm hopeful that his need-to-pee level will allow me to get this done. I also need to put together some kind of alphabet refernce sheet for him. This kid is so ready to start writing. He copies words and wants to learn how to write letters. It's been really fun to have the time to really watch him build these skills. The most amazing this is that it is not coerced. He spontaneously starts a new skill. So cool. Can I do this whole parenthood thing over again? So many things I would do different. The way I spent my time, being the biggest. Also, the things I stressed/obsessed over. Live, learn and do better. Right? Someone please remind me of this in a year, when things are getting a little easier.
In hind sight, we have sailed through this. While it has not been without moments/days of terror and worry, Gregory has conquerred so much. He still has much to overcome, but he is on his way. If I had to pick one word to describe him, I think it would be "grace". He handles everything with such a willing and loving spirit. With joy and fun mixed in. If there is a "best thing" about this experience, it's the time I've spent with him and him alone. Never would have happened, otherwise. Does that mean it was worth it? Never. I would give it all back in a New York Minute if we could go back. I've never said that about anything in my life. I do not believe in regret. This one? Hell, yes. I'd even gift wrap it for you and seal it with a kiss. It doesn't work that way, though. Here we are and here we stay. It's hard to believe that we have only been doing this for nearly five months, now. It's seems like an eternity has pass, but at the same time it feels like a nano-second. Sounds like life, doesn't it.
The sun is coming up and I need coffee. 'til later, gotta jet.