Since the last post, I've been doing some heavy duty thinking. I was very, very patient with how the whole tube debocle went. And clearly, I used up all my patience on waiting on that. Because now, I am out of patience.
As you know, he got his tube in at 3 but didn't start eating until 9:30pm. Why? Because they forgot to write the orders for food, it just said "Fluids". The next problem? He started retching and desatting.
Finally got the OK to start feeds.
Next problem? About 10:30, I went to change Manny's diaper and it was wet on the outside. His bed was soaked. Why? The nurse had not put his milk into his tube correctly and it was laying in his lap. Seriously?
Next problem? When he is on feeds, he is suppose to have erythromycin (it helps the motility in the stomach). He started feeds but he didn't get that OR his Prilosec (for GERD). 2 more "over sights".
Next problem? He had a rash/infection starting on his gtube area (I told them) and they were to write the order for some bactriban so it doesn't turn into cellulitis. I reminded them 3 times. FINALLY at 11pm it showed up. (Only took 8 hours. sheesh)
So now the issue is next steps. They really should not release a baby to go home with the kind of symptoms he's having ... his retching causes respiratory distress. But I have a feeling that they will just overlook that and discharge him tomorrow. Which is fine ... because I'm leaving tomorrow one way or another. I have lost almost all confidence in this team today. I don't know if the doctors got the messages of what was going on or not. I have a feeling the nurses didn't relay the messages. (Just a guess as his doctors are usually right on top of things.) I think everyone was soooo relieved to get that stupid tube in that they lost sight of the patient.
I love the nurses up on the 8th floor. Somehow down here, we're not a priority to the nurses. We're in the oncology wing and there are very sick little kids around here. So I guess a kid with desats and respiratory distress who hasn't eaten in 5 days is way down on the totem poll. (Or maybe I'm just in a bad mood.)
I have no clue why this has been soooo botched but it's quite bad.
(Written after I got home and had some time to reflect and synthesize.)
Tuesday night I got so upset that if I'd had a car, I would have left in the middle of the night. I was THAT upset. One time during that night, the nurse came in with water (flush) bottles. (For those who don't know, you have to Flush tubes with water every so often ... need syringes and water.) I reminded her that she never brought the syringes and said she's get them. 2 hours later she came back (without syringes) and started writing on the bottles. She said that JCO was coming by in the morning and they wanted to make sure everything was perfect. What about the syringes. Oh yeah. (By the way, I'm STILL Waiting for those syringes.) So basically, patient care was non existent.
She said we'd likely be discharged the next day since he was tolerating feeds. I was like, "I am for sure going home tomorrow since the doctors don't seem concerned about the retching." She was like, "Yeah". (She thought I meant that THEY weren't concerned so *I* shouldn't be concerned. But really, I was like ... I'm OUTTA HERE BECAUSE they are not concerned.") She was a few fries short of a happy meal though so it was all lost on her.
I was ticked. But decided to channel it all in writing a letter to my pediatrician. I left out ALL the emotions and only put in fact after fact. The end was a plea of what to do next. That gave me enough focus to finally let it go and go to bed.
The next morning, I packed my stuff and waited. By the morning, I'd had time to process and realize: What is it EXACTLY that I'm fighting for.
1) What to do when he is retching?
- Is it causing permanent heart/lung damage?
- When should I bring him to the ER?
- how do I know when it's him not tolerating the feeds versus the regular retching?
- anything that can be done about it?
Eventually, Dr. Cartaya got there. It was the PERFECT doctor for me. He asked if I was ready to go home. I pointed to my already packed bags but that I had a concern. I asked him those questions above and got answers. (And by the way, he WASN'T notified of the retching!! Next time, I call him myself!) We discussed all sorts of things (maybe I can include those in another post). But basically, there's likely not a lot we can do during these episodes, probably need BIPAP to support him. And no one knows about the second tube. (ugh)
He left and I felt a peace. In the night, I'd already written the pediatrician. I'd already written the specialist doctor with Manny's condition. I'd already written the muscuar dystrophy clinic for recommendations of doctors. etc. So I had a plan in works.
He came in a few minutes later and said, "Change of Plans ... you have to stay another week." To which I replied, "I will be needing one of those AMA forms to fill out." (Meaning I will be leaving Against Medical Advice.) He laughed! He was just teasing of course and was only in to ask if I needed refills on meds.
He hugged me and patted Manny on the head. And we were discharged. The nurse came in and took out the IV.
There were more debacles ... like his feeds are supposed to be continuous. I told the nurse that his food was almost gone. I had no formula in the room. He never came back. An HOUR later, he came in and I reminded him of the missing formula and he went to hunt again. He never did come back with formula until I was walking out the door.
Kaley and I had bags in hand and were walking out the door when the GI's Physician Assistant came in. She apologized she didn't get here before we were discharged but said Cartaya told her we still had concerns. I told her about the retching and desatting ... her eyes got HUGE and she was clearly upset that we'd be discharged in that condition. I was in shock too ... but also ready to get out of there. I told her the story and to put her brain around it. I'll go back next week for a follow up and maybe they'll have a plan together by then.
Soooo glad this hospital visit is over. And remind me, don't ever do a hospital stay when JCO is in town! Run for the hills.