Wednesday: Manny is doing pretty well with respiratory this time. He still has cold symptoms but is managing to keep it (mostly) out of his lungs. Therefore, he is stable and doing well. He's feeling pretty good.
We're doing the choo choo every 4 hours around the clock so that's keeping his lungs open and preventing further atelectasis or pneumonia. He's doing well enough that I think we can go home soon.
I asked the Pulmo if we could consider trialing him on just what we have at home to know if I can keep him safe and breathing at home. This is the stand in doctor since our regular pulmos are at a CF conference across the state until Monday. He doesn't like to make changes. So looks like I'll have to ask Doc this question instead.
He could probably go home tonight but it's not a great idea to push Manny right now. I was even brainstorming with the nurse that we could PROBABLY handle him if we were discharged. And on cue, he coughed and choked. As if to say, "Do I have a vote in this?" LOL So the nurse and I decided that one more day would certainly make more sense. I think the docs will be on board with whatever I feel comfortable with.
Meanwhile, on Tuesday, the GI decided to start trialing Manny on feeds in his Gtube. That's right! He hasn't had anything in there really since October 13 of last year. Nervously, we started 5 cc's an hour for 6 hours of half strength formula. Holding our breath, I watched him like a hawk for signs of distress. He had NONE. Wow! That's awesome.
Now for a reality check ... 5 cc's is like a teaspoon. So that is like 1 1/2 tablespoons of liquid over 6 hours. It's a looooong way to go. But it's hopeful progress.
Wednesday we decided to trail him on 10 cc's an hour for 10 hours at 3/4 strength. Sure. Why not? Afterall, what if it works!?? We would have the ability to get some alternate nutrition in him. We could lessen the trouble on his liver from TPN complications. etc. etc. So it's certainly worth the try!
6 hours in, it all went horribly wrong. The retching was very severe again. He lost his breath. Desatted. He was aspirating. Bad scene. I immediately stopped the experiment. (I had it put in the orders that we can stop if he doesn't tolerate.) The nurse gave him a dosage of Robinul to dry up the secretions that were causing him trouble. He eventually got ahead of it. And we pulled the plug on the experiment for the day.
Ironically, at the SAME MOMENT he was doing this retching, we finally got the report from Boston. That's right! It has finally arrived. We have been trying to get there since MAY! And we got results on October 10.
I poured through the results and was in a bit of shock by the results. (Drumroll)
Basically normal results. They recommend starting to trial him on feeds.
So imagine my conflicted feelings as those two events (receiving the "all clear to feed him" fax as he was retching beyond control). Now what?!?!
As I write this blog today - Thursday, 10/11/12 (cool date, huh), my brain is starting to process it a bit. I have really teased out the report and found a few explanations of what might be going on.
1) There was some small bowel inflammation. Strange since nothing had really been in it for about a year.
2) Gastric accommodation disorder. This one also doesn't seem to make a lot of sense. He was previously diagnosed with severe gastroparesis (less than 1 % left in a emptying study when 50 should leave). But this diagnosis says he might feel "full" too soon and then retch. This doesn't make sense because the retching is happening when he was being fed in the small bowel BEYOND the stomach.
3) Visceral Hypersensitivity. This is the only finding that makes any sense. It's in the small bowel where he has too much sensitivity to things being there and it triggers the severe reactions. There is very little that can be done for it. There are meds we can try but basically it's something that triggers a brain reaction to say, "PROBLEM.. REACT."
As I type this at 1pm, I'm still waiting for the GI to come in. She will have received the same report as well as the documentation of the failed experiment. Interested to see what she recommends on how to proceed.
2:00 Manny's breathing sounds weird. From what I can tell, the top part of his lungs sounds all junky and congested. The bottom part of the lungs isn't moving air (or not much) called "Diminished lung sounds." I called in the nurse and she heard the same thing. Not sure why he's suddenly a bit worse. He had a breathing treatment at 12 and sounded basically clear. They did an extra breathing treatment to see if we can get ahead of it and stop this in the bud.
3:00 GI here. We talked about the discrepancy between the "Normalish" study and the inability to tolerate the feeds. How can the tests and the clinical picture be so different.
We agreed to try anyway. Press ahead with feeds since the benefits are potentially so worth it.
The plan ... Get another GJ placed so we can feed into the J and vent the G (Like we used to do a year ago). She is going to try a formula that is very low in fat and is elemental to see if he can tolerate that. We will restart with VERY VERY low and slow rates/volume. We can start the tests here and continue at home once discharged. But we agreed nothing else will be trialed in his G for now.
She will evaluate the meds that he might need.
She will talk with the Doctor who did the Manometry testing in Boston to see his ideas about why the test would be normal but the clinical picture not normal and how to proceed.
Feeling cautiously optimistic about this plan! Did I tell you how I adore having a doctor who listens to me? She tells me I should go get my medical degree! LOL She thinks it's cool how I like to research and thinks I am good at it. I told her I wouldn't really want to practice but would love to have the knowledge base.
4pm, Doc agreed to switch to using only the machines I have access to at home for the night. That way I will know if I can handle him at home or not.
8am Friday morning as I write this part ... Manny slept pretty well with just the stuff I have at home. Therefore I know I can try to manage this at home. I'm a bit concerned because he is still sick. His lungs are gunky and he's still coughing/choking, sneezing, watery nose, etc. You know ... a cold. But for now, he's still managing to keep most of it out of his lungs. I know we'd both be more comfortable at home. And I can bring him back if he starts to struggle to breathe. So I will make a case for him to go home today. Doc usually goes with my assessment of the situation.
9am Nurse said that IR (Interventional Radiology, the ones that will place the GJ) doesn't have the size he needs. Those long term followers of Manny will recall how we spent 5 days in the hospital for this one time! So we will schedule it and do it as an outpatient.
10am Doc says we can go home! Now we just have to work on our TPN situation. Since we're with a different GI and we're on different formula, not sure if we can use the bags at home (that would buy us a few days to get it all together) or if the GI insists on using the current formula and then it's a mad dash to get the script to the Home Health Agency and the Pharmacist to make it then get it to me in time for him to hook up tonight. Obviously I'd like to avoid all that nonsense but we'll see.
And as we transition back to this GI, we've never had TPN under them so we're not sure how different their protocols will be. And I'll be under the GI that I seem to have communication issues with. So ... leaving with a bit of unease and uncertainty about all of that.
10:30 We can use old formula and go home NOW!! Yay yay