Week 10…What goes up must come down
Gravity sucks! After a fairly smooth week 9, we entered week 10. Mike was using the feeding tube regularly and had actually gained a few pounds! After our emergency room fiasco, and surgery for the new tube, Mike had a very good weekend. Saturday was the first day in months that he wasn’t nauseous. He hadn’t taken any meds and felt so much better. We spent the day getting outside and knocking off some long forgotten chores. Jo and Paul came over to visit and while we thought it would be a quick visit, Mike was feeling good so we stayed up talking until 11 o’clock!! It was great. Sunday brought a bit more nausea but still a good day.
We were hopeful that the worst was behind us and the nausea was subsiding. Mike’s throat is still screaming and the mucus is overwhelming so he still can’t eat but the road was looking good.
Tuesday, Mike decided to go to work. Amazing. He showered, dressed up for work and made it in for the whole day. His team was so excited to see him. They had lunch together to welcome him. What a great bunch.
Tuesday night, we got haircuts and had dinner with Dawn and Shawn (well, Mike didn’t really eat, but he kept us company while we had yummy Thai food). When we got home, we noticed that the tube was leaking. We couldn’t tell how long it had been leaking, but the tube was definitely clogged again, and Mike couldn’t get his meds or any food in him. So, off we went to the emergency room, again!
When we got there, we joked with the staff that we were frequent flyers. We tried to keep it light, but Mike was extremely frustrated that the 3rd tube had failed. He had every right to be. Just when things are humming along, the stupid tube bursts AGAIN! Apparently needing to replace a feeding tube doesn’t get Radiology surgeons out of bed, so our ER physician did his best to force a new feeding tube into the existing canal, which was incredibly painful for Mike. And, it didn’t work. By this time, Mike was in so much pain and was very dehydrated. They gave him pain meds through his port and then needed to give him a hydration treatment, so we were in the hospital until about 1am. To make matters worse, the woman at reception came in and asked if we wanted to pay the co-pay right on the spot. Mike told her this was warranty work and he was not going to give her anything!!
The next morning, we had to get up at 7am, to call and get a time that a new tube could be put in. We were lucky and got a 10:00 surgery time. That said, Mike was unable to get any pain meds or meds for nausea, so by the go-time Mike was a BEAR. He was so miserable. I felt so bad for him. The doctor was trying to convince him to put in yet another of the same style tube. Mike was furious. I told them that they better access his port ASAP and get him medication or things were going to get worse…. I have never seen the nurses move so fast to get him meds. Within literally a few minutes, they had 20 mg of Oxy in him and he was feeling no pain. Thank goodness.
We discussed options and decided on a bigger tube with a bigger balloon to give it more flexibility. Both the doctor and I were scrambling to find a better solution. So after a 2 hour surgery, which was supposed to be 30-45 minutes, Mike had a new, larger tube. Unfortunately, it hurt quite a bit and made him nauseous all over again. This was a big set back. Since the new tube was put in, Mike has needed to resume all his meds for pain and nausea.
So, now we are back dealing with all the symptoms again. Mike is getting weary, but he will pull through. One saving grace is that our friend, Guy Kisling, gave him an inside fishing pole, that Mike started using the minute he saw it. Unfortunately, he keeps trying to catch me with it!
Here’s hoping that my next post will bring lots of good news. We keep strong because we have angels. This week includes Jo & Paul for a great dinner, Aunt Marilyn and Uncle Gary for ordering dinner for us from Chicago!, Dawn & Shawn for the Thai food, Tracie & Guy for the fishing rod (if I survive it!), Dina for the salted caramel cupcakes, and again more cards, notes prayers and well wishes. They all make a difference!