melancholy day bordering on awful

Ricky 4-14-09
Originally uploaded by Beckerbuns

I managed to get to bed at a reasonable time last night. Then at 1:30 in the morning I got a call from Ricky. He had thrown up all over himself. The nurse got on the phone and told me that he'd been having the Go-Lytely through the NG-tube since 6pm and had just thrown up all over. I talked to him and told him things would be okay. He sounded a little scared and sad. :(

Got another call at about 4:20am. This time, it was the nurse. Ricky had had a coughing fit and was having trouble breathing. He was panicking and she needed me to talk him down (he had asked for me). He was wheezing and gasping and sounded AWFUL. I know that coughing and throwing up disturbs the NG tube. I asked the nurse if she'd called respiratory and she said she'd paged the doctor to come listen to Ricky's lungs, and had cranked up his oxygen. I talked to him again and calmed him down and told him I'd see him in a few hours.

After Andrew went to my mom's and Misty was at day care, I drove up to the hospital and got there at about 9:30am. Ricky was asleep. My timing was perfect because right after I got there, a hospital gastroenterologist walked in to talk to me about Ricky's condition. I learned that he had actually thrown up THREE times, and pooped once, although it wasn't very much. The pulmonologist arrived at that time too, and said that a KUB (abdominal x-ray) was going to be taken. The gastroenterologist said that Ricky was plugged up below the transverse colon (which I knew from yesterday's procedure). I told her that I had called Ricky's gastro doc (down here in San Jose) to let her know what was going on and he agreed that was a good idea. At that point I was still waiting for her to call me back.

Right after the docs left, the portable x-ray machine arrived and the lady took Ricky's x-ray.

While that was being done I went out to the nurses' station to chat with the charge nurse, who I knew from previous stays. The pulmonologist was out there and for the first time I heard the "S" word... Surgery. I struck it from my mind and didn't think about it for a long time, but basically what he said was that if none of these interventions worked, we would be looking at surgery. *shudder* He also mentioned that he was very concerned because Ricky's vomit had been filled with green bile. Sorry to be graphic here, but... That was what was in it on Saturday too and it is NOT a good sign.

I went back to Ricky's room. Things were quiet for a while and then the nurse brought in an enema. The x-ray results had apparently come back and this is what the doc wanted done. I never did find out what the x-ray showed but Ricky also pooped while I was there, yay. Still, it wasn't a lot.

Ricky's gastro doc from San Jose called me back and I filled her in on all that had happened. Almost everything she suggested, had been tried. Her final suggestion was simple stool softener, Dulcolax. She said she'd call the hospital gastro team and talk to them about it. I really wish I had called her sooner but it sounds like the docs at the hospital did the same stuff she would have. She has privileges there and was actually there over the weekend seeing another patient. She is going to come see him in the next day or two. She also said that the fact that he does not tolerate Go-Lytely is a "bad sign".

The resident psychiatrist also came to visit and we went over what had been going on. She promised to pass everything on to Dr. J, her colleague, Ricky's psychiatrist.

He slept all morning (probably because he had been up most of the night before? not sure) and around lunchtime the nurse reminded me about the enema. I told her I would wake him up soon to give it to him.

It ended up taking an hour and a half to get Ricky awake and convinced that he needed to have the enema. I had to take his Nintendo DSi away. But finally he let me do it. As has been our routine, he laid down on a blanket and his pillow on the bathroom floor and I did the enema. Then he went back to sleep. I had to leave to go get Misty, and Ricky ended up sleeping there for another hour and a half before he got on the toilet and pooped, but not a lot. I found this out later from the nurse. She said he'd gone right back to bed.

So I got the other kids, visited with my mom and grandma for a bit, and then drove back up to the hospital (with Misty and Andrew). When we got there, Ricky was sleeping. I took the picture you see here at this time. His oxygen saturation monitor probe was malfunctioning, but once the nurse replaced it, he was satting in the high 80s to low 90s. He had been on 6 liters of oxygen since I think Saturday? (minimum with a mask is 6L) and I cranked him up to 8, and then 10, before his oxygen level looked adequate. That was scary. The nurse and the RT this afternoon both said that he was diminished in his left lung. He has been unable to do the therapy vest since all of this started because of his distended belly and the pain it would cause.

After I had left earlier in the day, he had been started on a new medication, Reglan. I had, and still have, my reservations about this med because of the CNS side effects it can cause and the fact that you're not supposed to take it if you have a history of seizures (which Ricky does) or a bowel blockage (which he doesn't strictly have, but might as well have, IMHO). I am trying to let go and trust the doctors. They know about all of Ricky's issues and still want to try this medication. Obviously they wouldn't do it unless it was necessary. We are running out of options.

He had also been started on Go-Lytely in the afternoon, at a very low flow rate so as not to cause the major vomiting of the night before.

Ricky basically lay there and slept most of the evening while we were visiting. He refused his apple juice with Miralax, and only took his meds with broth because I coaxed him to do it. At one point I put on the Simpsons movie DVD for Andrew to watch and Ricky actually woke up and watched the last 45 minutes or so of it. Misty and Andrew went walking around the floor with a child life specialist, and I took that opportunity to get Ricky out of bed to give him his evening enema. He didn't protest at all. In the morning, he'd gotten out of bed quite easily; this evening he had a very hard time of it and was walking like an old man again. :( He got on the toilet only 10 minutes after the enema and pooped just a little bit, and got right back into bed and slept again.

We left at 10pm. I felt (and feel) so brokenhearted. My boy is not himself. His belly is distended, his innie belly button poking out like a pregnant woman's. He shuffles around like a little old man. He can't eat (doctor's orders) not that he would want to even if he could, I think. He is on oxygen because his digestive system is squeezing his diaphragm up into his lungs. He even has to have oxygen from a portable tank when he goes to the bathroom. His lips are angry looking and chapped and he won't let me put Carmex on them. Maybe I will sneaks some on sometime when he is asleep? There is, or was, a large amount of stool in there. There might be some getting out around it, but it's probably not enough. He will certainly require some other intervention this week. It could be an endoscopy, or another gastrografin enema (with scan?), or something more drastic.

I hate things being so out of control. I hate not knowing what the outcome is going to be. I want to make him better. I want to take it away from him and give it to myself.

I want this to be over. I want my boy home with me and healthy, back in school. That reminds me, his annual IEP was scheduled for tomorrow and his teacher has canceled it. There weren't any surprises in store anyway; we'll just meet next month. That's one less thing on my plate.

Guess that is it for now... Goodnight and thank you all for keeping Ricky in your thoughts.