((((((HUGS)))))) To All ~
I'm pleased to report that Jon has been quite well for several weeks now. Good vitals, all systems flowing and going, a normal sleep pattern. We are practically giddy with his improvements.
After a great amount of contemplation, I realized the most attributable factor in Jon's improvements is that he is now receiving the required amount of nutrition, calories and protein in a way, which he seems to be able to tolerate and utilize appropriately.
I believe that most of his problems stemmed from his gut. We thought that he could handle bolus formula feeding, but he periodically blew up with gas and became ill. We thought that he could tolerate cranberry juice for his bladder, but he blew up and vomited. We thought that he could tolerate real food in a blenderized diet, but his digestive system and slow motility proved us wrong.
Now that he is on a feeding pump with formula, being fed 18 hours a day, with 2 hour breaks for his 3 med doses, he is managing to tolerate his nutrition and benefiting from it. It's not what we wanted or hoped for, but it is apparently what he needs.
I strongly feel that Jon's seizure in June was precipitated by malnutrition. And the guilt I feel in just writing that sentence is gigantic. But I can't dwell on it, because that changes nothing. It's not like we lived in a remote shack in the desert without professional consultation. It's taken us this long on Jon's journey to figure it out. We tried various approaches, and they didn't work. We won't go there again. Jon will be attached to the feeding pump for the rest of his life.
Jon's Gtube is 18 months old and needs to be replaced. It has a large, hard glob in the middle of it, which may eventually occlude the tube or penetrate through to cause a break in the tube and leakage. At the bottom of the tube, near the stoma, gunky bumps are gathering. This is typical of Gtubes. I'm not alarmed. It just needs to be replaced.
The GI who volunteered to visit our home last year with an extension tube for Jon's Gtube was the likely candidate to ask for a home visit to remove/replace the tube. So far that has involved Jon's PCP for a referral, Jon's home health care nurse, and her supervisor, and the GI. And nothing has been accomplished among any of them in over a week's time.
I'm trying to be proactive, to avoid an urgent need to replace the tube, but I'm having to justify why it needs to be replaced. I took photos of the tube and emailed them to Jon's nurse, with the hope she can forward them to the GI. But, seriously, the tube is 18 months old and just needs to be replaced. It's long over due. So why I have to jump through hoops to get this done is beyond me, and I'm getting pretty much fed up (so to speak) with the nonsense about it.
The GI actually ordered Jon's nurse to visit and push Pepsi or Coke through the tube with a 10 cc syringe to move the clot. Like Jim and I couldn't do that? We use his tube constantly all day for food, water, and meds! And I know about the Coke/Pepsi technique, but it will not work for this very hard pebble-like growth inside Jon's tube. This isn't our first rodeo!
For 3 WEEKS now, we have been waiting to hear from the hemotologist/oncologist regarding Jon's blood test results. The results were supposed to be faxed to him by the lab, but I also contacted Jon's PCP and asked him to forward the results to the hemo/onco. So much for the urgency of these tests and this consult, eh? And, you can just imagine what's been going through my mind for 3 weeks as to the results ... just waiting ... wondering ...
Meanwhile ... DME mix ups over mattresses, lift batteries, and oxygen concentrator/tanks, which require my repeated follow ups to resolve. It's as if everyone suddenly left their brains at the beach.
All of this leaves me to ask: Why the hell is everything up to me?
Jon's Gtube is for his life duration and it is his life line for fluids, food, and meds. If I say it needs to be replaced, then it does. Just get over here and take it out and put another one in. It takes two minutes. Literally.
Three weeks for blood test results, now entering 4 weeks, is absolutely absurd, given the stress and trauma we and Jon were put through to get these tests. He lost blood he couldn't afford to lose, and by now those results are ancient history and likely meaningless, unless he has a significant undeniable blood disorder, and if he does, we have a right to know that NOW, not whenever they get around to telling us.
I have to beg for the nurse to visit to change his trache. I'm trying to coordinate her visit with Jon's primary nurse, so that the primary nurse can learn to do it. But why am I the one who is coordinating that? It's not my job, is it?
Last year, as the ICU nursing coordinator took over for Jon's nurse, who was busy with her other patient, was reviewing Jon's chart with me on the computer, she said to me, "You have to be on top of everything."
I wasn't sure if she was being sincere or sarcastic. But I responded, "Yes, I do. If I'm not, he wouldn't be here now, at all, or ever again. Mistakes are always made. I have to be on top of everything, so I can make appropriate decisions and catch errors, before they compromise or kill him."
I guess it is my job.
Love & Light,