So Friday morning Kramer was scheduled for a videofluoroscopy. It was a test that would check Kramer’s swallowing ability. He swallowed food with bips in it and the technicians videotaped the throat internally and examined how the food was handled.
The best news was that we got the results right away….and they were good. Kramer passed the swallowing test with flying colors….that’s such good news. He can keep progressing towards eating again. VERY slowly that is getting better. For awhile pudding was even hard to swallow but now he’s back to pudding. YAHOO. They said that it will very slowly get better….and it is.
From there is was doctor visits. Kramer seemed some better. He got moved to oral antibiotics..and we were given the choice to stay another day or go home. After some discussion we decided we want to try to go home. The good news, Kalissa and Kelli both didn’t work on Saturday so should things go south, I’d have help to get Kramer back to the hospital.
The change with Kramer after this stay, he’s requiring more oxygen. This is typical with a pneumonia and the hope is that once the pneumonia completely clears, he’ll be able to lower his oxygen needs.
Getting discharged was a nightmare. We were no not impressed. Everything else about the hospital and stay we loved…getting released we hated. I mentioned that I would like to get a wheelchair for Kramer. We want to go to Menards and look at stuff for a shower. With the change in his oxygen needs, this is more difficult as he can’t walk that far without being winded. I also worry that with his neck brace he can’t see the ground. He’s been hoping to go to the Labor Day service but our town streets aren’t the best. There are pot holes. What happens if he doesn’t see the pothole and falls. For safety and health, a wheelchair would be beneficial for him. Anyone can see that….but it’s not that easy.
I said something to the nurse. She smiled at me and said, “I can try…but…”
The doctor came in and I said something to the doctor. He said, “Well that might need to go through a different doctor.” The nurse came back and she said, “I think that has to go through the social worker.” Finally the social worker came. She said, “I’m sorry but this is going to take a lot more. The doctor has to sign off. It has to be approved by insurance. You need to go to a medical supply company. They likely can’t get you one until insurance pre-approves it….and the doctor can’t sign off on it until you go to physical therapy and I doubt physical therapy will sign off as you are in too good of shape.”  WHAT?? UGH. I wanted one for Monday so I could take him to the Memorial Day service. At this point Kramer was frustrated. I’ll admit to being a little frustrated too. Kramer asked, “How much does one cost outright?” The answer…about $250. The nurse was in during the conversation and she apologized and told us she thought it all was dumb too. Then about five minutes passed and the social worker walked through the door and said, “Here you go.” In her hand was the prescription for the wheelchair. Oh my word. That whole run around took about 3 hours. Like Kramer said…I bet that used up more that $250 in labor costs just to get us that prescription.
In the end, Kelli works at the nursing home and in the basement of the nursing home is a “graveyard” of unused medical equipment. People die and then the family doesn’t want the equipment so they give it to the nursing home. She was sure we could borrow one from them so I can get Kramer to the Memorial Day service.
That wasn’t the only trouble we ran into. Kramer has a patch for pain management related to his broken neck. The new hospital policy was that he couldn’t leave with a patch on his arm unless the doctor signed off on it. It’s fentanyl. It’s a dangerous addictive drug when not used properly. Well the nurse was going to take it off and give us another patch that we could put on once we left. WHAT?? What sense does that make? So…we had to wait to get written permission from the doctor so he could leave the hospital with the pain patch on. UGH.
Both the wheelchair and a the pain patch issue were happening at the same time which happened to be at shift change too. It made checking out a miserable experience.
We ended up home finally by supper time. Kramer tried sausage gravy and potatoes and he could eat it….very slowly and very small amount…but that was reason to celebrate.
I think these two missed me.
…and Grandpa too.
After a late bedtime, I couldn’t sleep. I was worried how Kramer would do overnight. I tossed and turned much of the night. At 7am I went to check on him to find that he had taken his oxygen off in his sleep….so we had an oxygen crisis. That took some time to get over. Kalissa called me to see how things were and offered to come over. We got him in “normal for him” range and started in on the day.
A bit later Kalissa was back home and called me. Carver was sick and going to Urgent Care. He had a temp and was throwing up….all complications due to his tube and adenoid surgery on Tuesday. He was miserable. I kept Gannon and off they went. It turns out he’s okay…sick but typical for day 4 after surgery.
While they were gone, I started in on reorganizing the laundry room. I cleaned out shelving in the cupboard to hold some of Kramer’s supplies. It was covering the counters and it was getting depressing.
I am settling in to the fact that Kramer needs a lot more space nowadays and it’s my job to find it for him…so out came my sewing and and crafting stuff and in went the things Kramer needs.
I gotta say, the work is so worth having some counter space again!!
Fingers crossed that we can stay out of the hospital and ER this weekend. We need a few home days.
Thanks so much for the thoughts, prayers and cards that have been sent our way. We so appreciate it.
Gentle hugs wrapped in prayers….
Praying for you all. This had definitely been a very rough year for you all with everything coming at you at the same time with no breaks to catch your breath in. I hope this weekend will allow you a little time to catch your breath and be normal!!
Just a warning the fentanyl patches will release too much if they get hot aka in the shower and it will make his heart rate increase and he will feel terrible! Watch that !! My husband had to open the door to the outside cold winter air to fedl like he was ok. You are basically overdosing and it can be dangerous!
Oh my gosh. One thing after another. You handle it better than I do. Our lives have been similar at times and it wears me out. Prayers for continued strength for all of you.
It sounds like you have the wheelchair problem solved. Going forward or for anyone who might need one, some sources might be an area VFW, a local church, or a community mission center. Prayers for your family!
Wow. It just never seems to be easy for you all. I’m glad Kramer got the fentanyl patch. That seems to be the only thing that really helps once the cancer goes to the bone. Who would have thought cancer in the bones would be so painful? Sure not me but boy oh boy is it. Don’t be afraid to ask for a stronger or weaker patch. Once you find the sweet spot it WILL help ease the pain and life gets better.
Hopefully you all can get oxygen levels better and stable. Glad he is eating a little better. With any luck that will continue and he will get stronger.
Jo, don’t forget to take care of yourself during all this. Take time to relax and do something special that you want to do. Even if it’s picking up something for Roger that you think he will enjoy. Take care.
Love, hugs and prayers coming your way.
You certainly are in our thoughts and prayers. Thanks for keeping everyone posted. I think we all consider your family part of our family too.
Here’s to (what will hopefully be) a weekend at home!!! Hospital run around. What a mess!! Especially, in light of the realization that there’s a wheelchair graveyard where your daughter works.
And I know there is a difference between a wheelchair and a transport chair… but Kelli and Kalissa will know that too.
Hope you have a long, boring weekend! Your family deserves it!
Thank you for sharing with us. I know that blogging about your troubles is helpful. Blessings and prayers for all. Kramer looks good in the photo! And a bit of a smile on his face! I have shared your info with my husband and he is also praying for you!
Oh goodness — glad that Kramer got to go home. Prayers for a good weekend for all of you. Hugs