BCIR Update #4

April 27, 2018

BCIR Update #4

I had not expected this update to be written from a hospital bed. I “should have been” discharged last week and back at home. Instead I had surgery for a fistula on Sunday. And I’m back on a liquid diet. Ugh. This was easier the first time around since I was so out of it. Now I am conscious of the fact that I am hungry. But we want things to heal, so I’m plugging along. At this point I have about two more weeks in the hospital.

As I would say at work, “I’m surviving, not thriving.” I’m ready to be thriving again. Hopefully once I’m back on real food, my body and brain will begin to cooperate. I’ve also lost 5 pounds, so I have to work on gaining that back, too.

Below are daily updates. Enjoy Wednesday’s under-the-influence-of-Dilaudid-update!

Sunday, April 22

Surgery went really well. I was actually sent back up to my room, not ICU. Feel good, but that’s probably the dilaudid. Dr R and the anesthesiologist both said I did great (like I had anything to do with it). Hopeful today.

Still feeling well, albeit hungry and thirsty. Thank heavens for ice chips and hard candy. Hopefully back on a full liquid or BCIR diet tomorrow.

Monday, April 23

Today has been OK. Liquid diet, so that really means I just haven’t had anything. Sat up for about 25 minutes in my chair. Having trouble with the Foley, but it was so nice to sleep last night, so I’m gonna try to keep it in one more night. Pray I can move onto a regular diet within the next couple days. I’m famished. No TPN* today. I think they might start some tonight.

*TPN is Total Parenteral Nutrition.  It gives me about 1400 calories through my PICC line.

Tuesday, April 24

I feel like today has been a big setback. Still no TPN, so I’ve had nothing since Saturday evening. Plus cultures came back positive for yeast, ESBL E. coli. I am on IV Diflucan and of course IV antibiotics. Hopefully should have TPN tonight. Somehow I managed to sit up in my chair today for about an hour. Just had a nice long nap, though. Think I might take another one! Prayed appreciated.

TPN order didn’t make it.

Wednesday, April 25

TPN delivered by 9 am. Getting hooked up now.

Well, today has been… OK. Three days post-op and I’m not completely unconscious. And part of me wishes I was. At least I didn’t know I was hungry the last time around! I’ve been sucking on Lifesavers and Jolly Ranchers just to have something in my mouth. Juices don’t even sound very good. Broth makes me sick to my stomach thinking about it. I did get up in my chair for two hours this afternoon. Then I laid down and fell asleep. When I woke up I was in quite a bit of pain. Of course, I had already asked them to discontinue the PCA (pain medicine) since I hate having the telemetry attached to me. So I tried oral Dilaudid.  I survived. Actually, my belly still hurts, so I’ll be taking it again at 10 o’clock. I ended up sitting up for another three hours this evening. I didn’t even try pushing today. Just don’t have energy. I was trying to do my bills, but found out that Dilaudid  and paying bills don’t mix very well together. So, we’ll see if I can get that done tomorrow. I had some visitors today from Denver. He’s a BCIR patient from 10 years ago. It’s really good getting to talk to so many different people and hearing their experiences. It was also wonderful to hear that he’s eating vegetables without many problems. Oh, how I want a good salad right now! I know that’ll need to wait a couple months, though.

Ellen leaves on Monday and my dad is going to be flying in. I don’t know that I mentioned that the day that I had surgery, my mom fell while I was in surgery. After being in recovery they brought me back up to my room and my mom wasn’t here. I was much more with it than they expected, but they kept up the ruse that she was running errands. I know my mom well enough to where she wouldn’t run errands while I’m in surgery! She had some new shoes on and they stuck to the floor but she kept going. Ellen went out and asked for some ice, I believe, and when they heard that my mom had fallen, they were required to take her to the ER. Her arm and knee are pretty banged up. She did hit her head, but that seems to be OK. But she’s been elevating her left leg which is pretty bruised at her knee. So keep her in your prayers, as well.

Who’s up for taking some wine classes with me? Sounds like 2 ounces of red wine keeps everything moving well, especially when eating rice, potatoes, pasta, bread and other things I love. So little bit of wine with dinner sounds like it’s in the plans. And for full disclosure, grape juice does the job, too, but I’m already sick of grape juice. It does look like will be sticking to the schedule for eating, which means I have about another six or seven maybe eight days before I’ll be eating again. This is going to be the hardest part so far, I think. I’m even dreaming of a few of the dishes from the hospital menu! And watching TV is tortuous due to the commercials. OK, so I’m realizing this is really long. This is Jenny on pain meds. Hope you’ve gotten a few laughs in. ?

Thursday, April 26

Jill weighed me today. I’m down 5 pounds. ? I did push twice today. Once just down the hallway, the other to sit outside in the sun for a bit. After I pushed outside I took a nap for about an hour and a half. I was out! Back in bed now and ready for an episode of Poldark.

Friday, April 27

Not much new today. Got up, took a walk outside but had some help pushing since we went all the way over to the water. I’m still only supposed to be disconnected for about 20 to 30 minutes, so I didn’t get to sit by the water as long as I would’ve liked to. But it was nice nonetheless. I’ve just been exhausted all day today. Took a long nap and it’s now 6:15 and I don’t feel like getting back up in the chair. Sounds like I’m on liquid diet through the weekend. I may get to a full liquid diet this weekend, but in all honesty, that doesn’t sound very appetizing either. I’m finally drinking a little bit of organic Gatorade that my mom got me. And the Italian ice they bring me on the tray. Not really touching anything else other than hard candy. First time around was much easier since I was out of it. Now I’m trying to not think about food. My dad flies in on Sunday.


This picture was from my 20-minute walk today. The IV pole accompanies me and Ellen pushed me most of the way. My mom and Ellen bought be a straw hat so my head doesn’t burn.

Thank you for all of your support!



6 Responses

  1. Jenny,
    You are one tough bird! You keep on keeping on! Each day that passes is one day closer to full recovery.
    With prayers,

  2. Jenny, I’m so sorry you aren’t able to eat anything to keep you from being so hungry. Please tell your mom to be careful, I can’t imagine her falling but thanking God she didn’t break anything.

    I’m continuing to pray for your recovery, you’ve been through some tough surgeries. I’m thankful your dad will be able to fly out.

    Love, Cheri

  3. Jenny when you get to full liquids I encourage you to order the creamwd turkey rice soul if they have it. It does NOT look good but it is delicious! I wish I had ordered a couple extra bowls for later.
    Keep the faith!


A gifted athlete. An unthinkable accident. Will a wheelchair crush her adventurous spirit?

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Jenny Smith

After a spinal cord injury at 16, I discovered that a wheelchair could take me places I never dared to imagined.

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