First of all, happy birthday to Josh who is EIGHTEEN today, holy guacamole, and to my dad who is 45 years older than that. :) I love you both so much!!
I was telling my sister in law yesterday that it’s difficult for me to write updates when things aren’t going well. Even if it’s just a bunch of little things that aren’t going well, they all add up to several crummy days in a row and you don’t want to talk about it, and it’s definitely not fun to write it down in a permanent record.
He’s had several bad days in a row, with a couple hours of doing well each evening. The worst was the other night when he started feeling really good, and the doctors told him that one of the main things he needs to do to get out of here is start eating again, and they said sometimes spicy, strong flavored foods taste best at first… So he first tried Fanta and doritos from the vending machine, which went well. He then sent me to the store for taquitos, more doritos, fruit cocktail, ranch dressing, nerd ropes, etc etc. And he ate 5 taquitos, they tasted good. Then, we had a no nonsense nurse that night who stood there waiting to watch him take a certain pill. I was trying to get Ben to take it, saying, “come on, this is the tiniest pill, let’s just get it over with, then she can leave and we can take our time with the other ones.” Sometimes Ben stalls to be silly, and I thought this was one of those times. I kept coaxing him, but then he started crying, harder and harder, until he worked himself up so much that he started coughing and he threw up everything. The nurse was still just standing there with her arms folded, and she said, “do you think he’s going to take that pill?” I said, “well he’s not going to be able to for a while NOW…” it took me hours to get him calmed down, and he finally told me after she left that his stomach was upset. I told him I would never push him to take pills if he’s feeling sick, but he needs to tell me, otherwise I think he’s just being silly or stalling. And he needs to be serious about taking his pills so things can go more smoothly, and we can just have better communication all around. Anyway, I felt horrible for letting the nurse silently push me into pushing my kid like that. Seriously, he sobbed for like 3 hours. I think he was so upset because a) I was upset with him (but I apologized profusely, and so did he) and b) he felt very discouraged that he had thrown up everything in his stomach, and felt like this was a major step in the wrong direction.
(Disclaimer – normally the nurses and PCAs on the BMT floor are very professional, this was a very out-of-the-ordinary night.)
We barely saw the stern nurse after that. They usually need to measure the volume of emesis and everything else that comes out of the boy, so I left it in the bathroom and asked the nurse if she needed to do anything with it (it smelled) and she said the PCA would be in to take care of it. A while later his pump was beeping and I needed to go to the bathroom anyway, so I told the people at the desk (one of which was our PCA) who were sitting around goofing off about our pump, and went on to the bathroom. On the way back past the desk I said to the PCA that the nurse said that you would come in and take care of the vomit… The guy whose job it was to really be sitting there spoke up and said, “Robin went in, she’ll take care of it.” I smiled and said OK and left, thinking yeah right. Robin was just about to leave when I got back to the room and practically begged her to take care of the vomit. She reluctantly snapped some gloves back on and went in and announced that there was a lot of undigested food in there! Then she came back out and put her hands on her hips and said, “did you eat too much, too fast?” I said, “it was his first time eating in a while,” and slid my eyes back to the Harry Potter movie. She said, “Ah! Well that explains it. They almost always throw up the first time. Blah blah blah….” I was mad about so many things by this point, I just gave her little glances and nods and said “Thank you for doing that.” and tried to clearly show I wasn’t interested in discussing vomit with he anymore.
The next morning at rounds, the 20 doctors and nurses and their rolling laptops all stopped to stare at me as I tried to get my brain to work after 3 hours of sleep. They asked me how the night went and I rubbed my eye and squeezed my head trying to remember. I told them that he ate, but threw up – but I didn’t think it was because of nausea, it was because he was upset. And then he couldn’t sleep again, this is the 5th night in a row that he hasn’t been able to sleep. “Well, you just need to keep him up during the day! Work him harder at PT!” said this week’s attending doctor. I looked at him exasperated. “He pushed ME in the wheelchair up to physical therapy yesterday. (Gasps from the audience) He didn’t take a nap at all yesterday. He’s working hard.” The doctors and nurses put their heads together in twos and threes, except for the attending and our main CNP. They both agreed there was nothing more they could do, medicine-wise, and to just keep doing what we’re doing. Sigh. Our main CNP is much more easy going when she is not in front of this particular doctor, I’ve noticed, and definitely more at ease when she’s in our room just by herself with us. She apologized for not warning us in advance about how he probably would vomit after eating the first time. And she was much more understanding and compassionate when not being stared down by 19 colleagues.
The pain team doctors, on the other hand, are always concerned and helpful. They have increased his elavil to help him sleep and would like him to take his pills at 9pm, but he still stalls until 11. My favorite pain doctor is a mother of 3 boys and we sit and talk for long periods of time about all sorts of things. Very sweet lady.
Dressing changes are painful, labs at 4am are super annoying, he just threw up AGAIN in the process of me writing this, and I keep bugging him to let his school teacher, physical therapist and occupational therapist work with him on days that he’s feeling good, which is just awful, isn’t it?
On the plus side, we just finished the last Harry Potter movie yesterday, it was very cool to watch them all back to back like that. He gets unhooked from his pole for several hours every day, and this allows him to go up to physical therapy easier instead of always doing it the room, and also we can walk in the halls on our floor.
They sent out a lab on Monday that is supposed to tell us how much of Ben’s blood and how much of Josh’s blood is in there right now… Since they are so closely matched, it takes 4-5 business days to get the report back. No results yet, and I’m not sure what exactly we are hoping for – I would assume we want to see Ben’s blood because that means he’s making his own cells now (which seems obvious from the numbers, but what do I know?) Maybe we’ll hear back this afternoon, maybe not until next week. Also, his next bone marrow biopsy is on Feb 17th, next Tuesday – to see if we have been successful. Thank you again for all that you do for us. Love you all.
Ben’s current mix of morning pills – Happy Valentines Day!