I was hoping the old posts would be back up by the time I got home from picking him up; but I see it is not. I'm not sure where I left off; think it was Thanksgiving dinner.
For those just starting to read; the link to my post in the rose forum is below. I have our wedding picture in the 1st post.
We had our Thanksgiving 11/15. I made the decision to do it early because I knew his next chemo was scheduled for 11/25 with discharge on Thanksgiving day. We knew we were going to have it the 15th or 22nd. His mother was going to fly out for the 22nd.
He'd gone to see the radiation Dr Thursday 11/12; he said the mouth sores were at stage 1. Had I waited, his mouth would be so torn up, he may not be able to eat. His mother changed her flight (coming 12/8). By the 18th he could barely swallow when he got up; ended up going downhill from there.
I'd covered my butt the 18th & got him a "Magic mouthwash" script; he ended up using it. The day after I asked for a liquid pain med script; ended up running around for 2 hours trying to find a pharmacy that had it. I ended up having to forfeit the script; they didn't have enough to fill 30 days only 12. Thankfully I took the 12 because he ended up needing it by the time I got home. The next morning, I was in the garage when I heard him get sick for the 1st time in 10 years that we were together. He took some liquid pain meds; was using the feeding tube when he got sick.
They ended up giving him another IV that day; nothing appeared wrong so he had his radiation & we went home. By the next day he could barely drink. I told him either he tries to on his own or they will admit him. He managed to drink 2 bottles of water each day. When we went Monday 11/23 his mouth was so bad that he packed a bag because he knew he probably wasn't coming home & he didn't.
On the way in he was very discouraged; I let them know when we got to radiation. The Dr came right down & said he had a fungal infection in his mouth, his feeding tube was infected as well. He called the oncologist to discuss admission; we walked the block over to there. She gave him a choice of getting an IV & going home with a few prescriptions or getting admitted. I spoke up; said I wasn't bringing him home. The feeding tube had a huge growth on it. We'd seen the general surgeon a few days before; he tried to cauterize it. The silver nitrate dripped around the opening; burning his stomach.
He was admitted until Thanksgiving day; this has set him back at least a week with chemo. Thankfully radiation was still able to happen. While he was admitted they gave him morphine which did not help until the next day as well as 2 antibiotics. I was not able to be there the next day due to my back appointment so I called the nurse the next morning asking her to get the general surgeon up (he was on vacation, we knew this) and that I wanted a culture of the tube as well as an ultrasound & CAT Scan. She passed the info on. I called later on and while the GS had stopped by, they did nothing.
Apparently they tested his blood for infection - none. They figured that if they gave him 3 types of antibiotics, it would wipe out whatever was "growing". When I got there Wednesday it was later then I'd wanted to get there; I had issues getting my own scripts filled. I immediately cleaned his feeding tube hole; called the nurse in to look at it. She called the oncologist who came right up. The oncologist did not like the look of the growth & how red his stomach was; she called general surgery back up.
He was not supposed to get radiation that day because he was neutropenic Tuesday night- the infection was so bad that his body was not winning the fight against it. At some point they redid the blood and decided to send him to radiation. While there I had the radiation oncologist look at his feeding tube; he called the oncologist to make sure it was going to get taken care of.
When we got back from radiation the general surgeons had already come & told the nurse to use the silver nitrate on it. After making some phone calls to another floor she decided she was not doing it; especially since they never actually looked at his infection/growth. When the nurse asked them to come back in an hour, they refused. During this, I was calling our general surgeons office to try to get help; the nurse also tried with no luck.
I gave up & went home because hubby was out of it from the morphine. He did so good while I was there, did not push the button for a morphine dose until we were at radiation where one of the nurses handed him the button & told him to push it. He did without realizing what he did & it was too late. lol
On my way out I stopped at radiation again to let them know what happened with general surgery. I was exhausted when I got home but some how managed to think to call the nurses station to tell the night nurse not to let anyone "burn" his growth off. I was told to call back in 30 minutes & by the time I did the general surgeon had come in; not exactly sure if it was the one on call or the one from his Dr's office; but they had already burned it off.
Thanksgiving morning was the pits. I emailed someone I know from another forum & sent her a photo of the feeding tube growth just to make sure I wasn't overreacting; she said no. Her dad had a similar cancer so she's been there. She told me to insist they make sure he doesn't have another cancer growth starting in his stomach. What stunk is 3 people offered to go with me & I couldn't take anyone because of his ANC levels. I was afraid to bring anyone near him.
As I was leaving, hubby texted me to say he was being discharged. I was fuming. How do they discharge someone with a huge infection in their stomach; it was so bad he couldn't get more then 1 syringe of canned food in him; plus he'd started throwing up. He also was not weaned from the morphine.
I got off on the wrong foot with his main nurse. Apparently she did not like my concern for my hubby and copped an attitude. She wanted to give him a pain patch; I wanted to see the oncologist, general surgeon and how much pain he was actually in without medications. The oncologist came up & answered all of my questions, told me he was going to throw up from coming off of the morphine.. nice. Hubby made the decision to go home.
It was a long night; the next morning he threw up his meds. I realized we couldn't use the liquid pain killer; then ended up finding out that he wouldn't throw up as long as we kept percocet (crushed & through the tube) in his system every 6 hours. By Sunday night he was able to start "eating" pureed food. Monday he was able to "eat" twice.
Yesterday they admitted him for his 2nd chemo & has been doing well. He's been sleeping since we got home but was actually able to eat food through his mouth this morning. Nothing is tasting right; so with what has happened this last week, he's lost about 6 pounds which he couldn't afford to lose. The radiation Dr wants him to eat by mouth so that his muscles don't get ruined; I think that by this weekend he'll be able to eat on his own.
What ticks me off is that the feeding tube infection isn't being considered anything more then a chemo complication because it affects the body's way of fighting infection.
It's going to be a long 7 to 14 days while we see what this dose of chemo will do to him if anything. They ended up cutting the dose down due to the infection so I'm not sure if that will mean he will have more then 3.
I'm going to post this to the rose forum as well since the forum isn;t working right, I'm sure the post will get eaten by tomorrow. lol
Here is a link that might be useful: My hubby - need prayers.. - rose forum link
2ajsmama
cooperbailey
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