I cherish my kids' youth, my sleep, and my 20 minutes of television before I fall asleep each night. :-)
Thursday, April 21, 2011
Adrian has had several really good days. He is slowly gaining weight - about 2 lbs so far, which is ~10% of the way towards where he needs to go. His heart rate is responding positively - several nights in the mid-40's. When we got here his nighttime rate was 28-29. He'd probably be 4 or 5 lbs up, but we lost about 8 days in the middle of all of it to dr. rotations and therefore didn't get the feeding tube in when they should have. Let's save that story for the lawsuit. Or possibly later on in this update.
So now we are looking at the transition to the Eating Disorder Unit/team. This coming week, he will keep using his feeding tube, and start thinking about going on partial food/partial tube mid-week. At the moment, we are thinking he is going to move over to the EDU around the same time. I am trying to let him get his mind around the EDU as it is a very different environment from what he's come to know and love here in the main hospital. I believe psychiatrists call this Stockholm syndrome :-)
I think Monday - Friday of this week will be very hard for him. But, he is in better condition to handle it than he was 8 or 18 days ago. My goals for the week are to make sure he doesn't get pushed over to the EDU before he is ready. I also need to find out exactly who's 'choice' going to or leaving the EDU is. We were pretty surprised to find out that even though WE asked for him to be admitted to the hospital three weeks ago, once admitted, it was no longer up to us how long he stayed or whether we could take him home at all. Sobering. I do not want to get him admitted to the EDU if it is not up to us to decide when he can leave. In the best of circumstances, we would almost completely base that on what his team was recommending. But this has not been the best of circumstances. There are issues of trust between us and his team and him. I need to know that we have the power back. I don't think I can check him in if that isn't the case. It won't be easy to find a comparable alternative. And I won't check him in against his will. He surprised me today by saying he thinks he wants to do it. The surprise was just that I didn't expect him to get there so quickly. He has an amazingly good intuitive sense of what is right for him, so maybe that is kicking in. So, I'm going to keep doing the homework and pray for the right thing to happen, and for Ozzie and I to know that it is right.
What I am trusting is his own process and his body. The nutrition through the tube has done amazing things for him. It will be such a challenge to replicate what he's getting when he goes back to doing it himself. My true preference would be to let him keep getting it at night, in conjunction with what he does eat during the day. And, that could happen. I'd be happier if he could gain maybe 50% of his weight with the help of the tube. Though I suspect he will opt to ditch it asap once he tries eating again.
The other sobering thing is my concern about him and the other kids in the EDU. He's 12. A very young 12. I'm not so keen on him hanging with a bunch of 16 year old girls who are on their 4th time around in treatment. Not that there's anything wrong with that....but it's too much like prison - he'll end up learning all the tricks of the trade and move on to become a true anorexia nervosa patient. Right now, I consider him a 'medically-induced anorexic'. He wants to eat. He wants to gain back his weight. He doesn't want his stomach to hurt. It has hurt so much less while on the tube. He doesn't want to get fat, but he seems to understand the difference between healthy weight and overweight. So I will talk to part of his team tomorrow about that -- about what age group he will hang with based on what kids are in there now.
We have come a long way --- the difference in him is remarkable, tangible and heartening. The staff has gone from thinking he is a psychotic, violent flight risk to thinking he is the sweetest kid they've ever known, with occasional spikieness. If he can get even partly through this program, he'll get help that he really needs with anxiety management, stuck thoughts and his fear of stomach pain/constipation. The thing that got us into this whole mess in the first place. Which, I'm not going into any of that here. That is a further indictment of Children's Hospital and also me, as I was doing too good of a job at being the 'good MOC*' to the authoritative dr. *MOC is the notation for 'mother of child' that they use in the chart notes. "MOC is freaking out that they changed the Miralax dosage time"!!
Things I will not miss from staying in the hospital for three weeks:
-Emptying out 'hats' of pee. There is a pervasive odor in the room that does not take a break.
-Having another person in my room 24 hours a day straight, taking notes on every effing thing anybody does or says. I haven't had an unobserved conversation with my son for 17 days.
-Dire lack of sleep.
-Coordinating a wheelchair and a tube pole that is hooked to Adrian's nose around to go out for a
'walk' with him. I haven't earned my license for it yet, and the accidents are traumatic.
-Dealing with everyone else's needs and personality quirks. You really get to know a lot of the staff, especially when you have what they call a 'one-on-one' assigned to you. A one-on-one is a Mental Health Counselor who just stays in your room for their 12 hour shift, writing every 15 minutes into the chart on the computer. One of the ways you can qualify for this is when your son, the patient assigned to bedrest, decides he has to leave the 8th floor and find the nearest drum kit. It turns out this is forbidden. Defcon1. (Although I comically kept calling it Defcon5 the entire first week. Thanks to my geek friends for gently correcting me.)
Some of the 1:1's have been wonderful with Adrian. One or two of them are far too controlling, interruptive and have a need to be just a little too helpful. It drives Adrian crazy. I distract those types by making them talk about themselves. Moohoohaha. But the fun ones make life here better.
-More interruptions during the night than having a newborn.
-Seeing my son screaming, restrained, being carried from the bathroom to the bed and going out of his mind with fear. A few times.
-The teaching hospital thing. Look, I've worked at universities my entire career. I am a firm believer in higher ed. And, if your kid is having a life-threatening crisis, you might consider avoiding the teaching hospital. Organization and communication isn't the strong suit. And I do believe they have good intentions, it is just tough to implement such things in a multi-level, 'no one's in charge'-type bureaucracy. Pretty much everyone here is 29. Yes, I guess I've reached that age when the adults are so much younger than me that I don't recognize them as adults. And, there is nothing wrong with being 29, but you have limited experience as a dr. at that age. Tradeoffs. In this particular case, I can't help but wonder what would have happened elsewhere. Yes, Avista, I'm looking at you.
Things I am so thankful for after staying here for three weeks:
-Dr. Dan Reirden. Not wanting to be a drama queen, but I believe he just about saved Adrian's life 8 days ago. He told us on day 2 or 3 that the kid needed to be on a feeding tube. We believed him. Adrian got there himself a few days later. But 'Dr. Dan' had rotated off and someone else was 'in charge'. I would ask about the tube and was told, "oh, let's give it a few days". They talked Adrian himself out of going on the tube. I'm not over it yet. Dr. Reirden came back 8 or 9 days later. That rather fateful Saturday morning, I was temporarily kicked out of the room while they were trying to calm Adrian down and gently remove him from the upper right hand corner of the window, I came to the realization that I had to demand they get him on a tube and give him some medication to reduce his malnourished-brain-induced-traumatic-reaction to every single thing. The kid could not think. They should have gotten a penalty flag every single day since about 9 days earlier for unnecessary trauma. I went back down to the room, just in time to see good old Dr. Reirden walking toward me from the other hallway. I'd been up for 4 hours, he'd been back on for 2 and we'd both come to the same conclusion. He started explaining what he wanted to do. He actually told me that Adrian had *lost more weight* since he'd been at the hospital. I listened, he said 'what do you think?' I said 'dude, you had me at hello 9 days ago.' He was the lucky one to explain to Adrian that they had kind of screwed up and boy, he did a fantastic job talking Adrian back into the idea of it. He also prescribed an extremely low dose of a better medication to help with his over-the-top anxiety. And for a week, he was in charge. Adrian really liked him.
24 hours later, things were different. No outbursts. More sleep. 48 hours later, he already looked just a little tiny bit more like I'd remembered him last fall. A week later, he is acting something more like his old self. We don't have the laughter back yet. He will laugh politely, but not the joyous and contagious sound we had come to love. I hope someday to hear that again. So, thank you, Dan Reirden. Oliver Platt will play you in the movie. One of the benefits to being the author of the book is that I am going to make a deal to also be the casting director.
-I'm very thankful for so much of the staff we ended up with. We had some nurses and 1:1's that have been just golden. They were able to see past the freaked out boy and get a glimpse of who he is underneath. Which paid off really well for them, as he is also grateful and does things like burn them CD's and bring them lollipops. It took us a little while to find our peeps, but we did find them.
-What a learning experience for Adrian. He's going to be wiser at 13 than I was at 40.
-The dogs that visit
-My friend Paul, his family, my husband ozzie and his family, and everyone near and far who has offered support. I'm a bit sensitive about Adrian's situation and who I tell the story to. I don't think everyone has the capacity to get it, and I'm lucky that there are people close to me who do.
-The tootsie pops in the gift shop (Adrian negotiated with Dr. Reirden that he could have one tootsie pop a day while on the tube f/t).
-Our first resident, Dr. Jasper. He took the time to develop a real relationship with Adrian, and Adrian trusted him. We lost him to 'rotation of service' a few days ago :-) (To be played by Chris Elliot in the movie.)
-Dr. Kaplan, who, although I didn't agree with his avoidance of the tube, I liked his weary style. "I've been doing this for a loong time", he said several times in one day. He told me, and I'm paraphrasing here, 'oh, you know, it's a teaching hospital and everyone thinks they know everything and they need to be seen and so sometimes the right decision doesn't quite.....just call me if anyone tries to mess with you.' Casting: Latter-day Bill Murray.
-Shandra, the favorite nurse. She gave us her number to call her on her days off if 'anyone tried to mess with us'.
-Baba Ganoush, the 1:1 sometimes known as Erin, who is the best Yahtzee-playing, Scrabble-wrangling playmate a12 yr old boy and his mom could ever want. I adore her. I think we've spent 5 12-hour daytime shifts with her. She and her mellow-yellow ways will stick with me for a long time. Named after some nicknames in "Wedding Crashers". Can't figure out the casting yet. If I could get a young Ellen DeGeneres with a blond, corkscrewy wig, maybe.
-Matt the CA who doubles as a 1:1 on the weekends. He gave me the real gen-er-al hos-pi-tale scoop, and helped me understand why it felt like we were in hell. I'm thinking Rainn Wilson will play him, though it could be Bobby Moynihan from SNL.
-Harold Ramis, Bill Murray, Danny Rubin (screenwriter) for the film "Groundhog Day". I couldn't have done this without you. The film gave me a framework for my life here and inspired me to get it right.