A lot has happened since my last update. I flew home. Then less than two weeks later I flew back to Florida.
As an overview, I had surgery March 30, 2018, to create an internal ostomy to make going #2 easier. Then I had two more surgeries for fistulas (holes) in the pouch.
The two weeks I was at home were good, but very busy and stressful. I had so much to do to get caught up, plus intubating every two hours, plus IV antibiotics each morning and evening. I think I had more rest at the hospital.
The positive side about my time home is that I met Monica and her daughter Anastasia who helped cook, do the IVs, unpack, clean, plant flowers and so much more.
I quickly figured out how to intubate, but the stomas (urinary and BCIR) were only about an inch apart. This made it very difficult to use bandages and keep the urinary stoma free of infection.
Then a small spot on my incision opened up. Then it drained stool. I headed back to Florida.
During surgery #4 Dr. Rehnke tried to repair the fistula, but when he tested it, fluid was still coming through the stoma. So he created a brand new pouch. A one and a half hour surgery ended up being 5 hours long. The great news is that he was able to move the stoma several inches higher, which has made a huge difference.
After another 4-week hospital stay, I decided I needed some rehab before going home. I’m currently at Frazier Rehab in Louisville. I’m trying to regain my strength and put on some much-needed weight.
Since my parents were on vacation when I returned to Florida, Anastasia accompanied me to St. Pete. Jill, Angie, and Leslie all joined me in Florida to keep me company and help out. I’m so grateful for my supportive friends!
The day of surgery #4 I needed an English speaker to relay messages to family and friends. So I asked Jennifer if she could act as my liaison. Thankfully, she and her husband Edgar were both off of work that day. I “met” Jennifer in a Facebook page for spinal cord injuries. Her husband Edgar had just been shot in Guatemala and had sustained a spinal cord injury. I sent her information in Spanish about pressure sore prevention and connected her with Mark Richard, who manufactures wheelchairs in Guatemala. After 14 months living apart waiting for his spousal visa to be approved, Edgar finally got his visa and moved to this US to be with Jennifer. I love that Jen, Edgar and I have been able to mutually support each other in only ways God can plan out.
Emptying the new pouch is going well. I’m up to every 4 hours during the day and 8 at night. Slowly I will work up to emptying the pouch (called “intubating”) only 3 times a day.
Has it been worth it? Ask me in 6 months. My body still has a lot of recovering to do and I’ve been told the first 3 to 6 months are the most difficult. At the forth surgery, I essentially started my three months over again. This procedure has tested me far beyond what I expected. I’m drained physically, emotionally and spiritually.
Please continue to pray for a full recovery. I desperately need to gain weight. I have two Stage I pressure sores on my tush from being too bony. My original plan was to be discharged on Friday, but we’ve pushed that back one more week.
Below are the text updates I sent out for those of you interested in a day-by-day progress reports.
Tuesday. June 24
So… An unwanted update. Stool came through the small spot in my abdomen this morning. I immediately knew that it meant a trip to Florida. I just spoke with Dr. Rehnke and he feels that a fistulagram is needed first (as well as being on suction to take off any pressure). This will tell us where the fistula is going from and going to. He, of course, is optimistic that I am not leaking from the stoma. I agree with this, but I’m not so optimistic! Right now it looks like Anastasia can come with me. I feel comfortable with this since no surgery is scheduled at this point. She is able and willing to sleep on the couch that many and most family members sleep on at night. I need to buy tickets for Saturday afternoon. Pray everything falls into place, as well as transportation.
Saturday June 24
Just landed. Fun sitting next to a young teen boy who’s never flue before. When they announced beverage and snack service he asked what they meant. I explained they would ask what he wanted to drink and give him a snack. “For free?!” ❤
Sunday June 24
I’m settled into my room (same one!) and have been playing cards and watching Cable Girls on Netflix. Tests will begin tomorrow (I hope) when Dr R gets back in town. All is good.
Monday, June 25
Plan for the day: get fistulagram and new PICC line (can’t get blood from mine – being poked every morning at 4am isn’t pleasant). Culture results were positive for E.coli – not surprising. Started an antibiotic. Meanwhile, I got my legs epilated by Anastasia and she’s doing hers now. Mine obviously didn’t hurt. 🙂
PICC replaced (same location), fistulagram with CT Scan, English class, and Cable Girls. Definitely a fistula going from the pouch, but report was vague. Will know more tomorrow after talking with Dr R.
Dr R just came in. Surgery COULD be tomorrow. Jennifer is willing to be here to help communicate with text messages (and with Anastasia). “Very small fistula. Good news is it’s leaking only from the inside (not out of the stoma as it had before).”
Wednesday, June 27
Looks like surgery is today. Don’t know what time yet.
5.24 pm Headed back in a few. 1 ½ to 2 hours.
From Jennifer: Just got word from the nurse. They are creating a new BCIR and she will be in surgery about another 2 hours. Didn’t give me any more details then that but said it was going well. Keep up the prayers!
From Jennifer: Great news!!! Dr called… She is out of surgery and in the recovery room! When the dr went in, he saw that the fistula was probably going to keep opening. They stitched it up a bit and saw it was leaking a little so he decided to completely redo the BCIR. They used more of her small intestine to make a new pouch and was able to put it higher up in her abdomen so the stoma would be farther from the stoma she caths from. Yay! She had plenty of remaining intestines. He said it was a success and is very confident that it was the best decision. I was told she will probably be in recovery for a couple more hours then she will come up to her room.
Thursday, June 28
Still haven’t slept. Doing okay all things considered.
Friday, June 29
Here’s an update. Good news is that I’ve slept all day. Or at least most of the day. From about eight until two I was out. Then Jill [the nurse] came in to change the bandages, PT came in and just did a little bit of stretching for my legs. Have not even sat up straight in bed yet. Last night was not a great night. Yesterday I could tell that I was very dehydrated. My blood pressure was low but it didn’t seem related to the meds to me. I had only received 900 mL during surgery. So we played catch-up all day yesterday. Thankfully, I remembered what happened last time we did this, so around 7 o’clock I mentioned that they might need to check my hemoglobin. It was down to 5! So all night long I got to have blood. That’s another night without much sleep or any sleep. This morning my lungs are feeling fairly heavy, so I requested respiratory therapy to give me a treatment. I feel a lot better since then. Little by little. Also, Sue picked up Anastasia today and took her out shopping for a bit. Very glad since I think she needs to get out a little bit more. My friend Jill will be coming down and arriving on Sunday. Think Anastasia will leave Monday afternoon since that’s when the flights are. Jill will come for a week, and Angie will be coming down for about five days. I’m not even going to proof this, so sorry for all the typos!
Sunday, July 1
Surprise visitors from work!
Superwoman had a whole bunch of kryptonite this morning! I’ve been having a hard time breathing, possibly due to a lot of swelling in my belly. I was trying not to move around a whole lot. Well, we know how this ends… Thankfully, by the time I got up to my chair I was able to have respiratory therapy come in and loosen all the crap up. Well I was in the process of getting up, I was told that I had visitors. Visitors? Once I got up in my chair, I told them to send them in. My coworkers “stopped by” while they were in Orlando! I couldn’t believe it! Jill also arrived this afternoon with Shelby [a service dog in training].
Monday, July 2
Ended up having a barrage of tests today to look for the cause of a fever. Ended up having a blood culture, urine culture, chest x-ray and I think some others. Chest x-ray needed more clarification, so I had a CT scan at 5 PM. Don’t know the results of that at this point. In the midst of all this fun stuff, I’m having to go off one pain medication that has really worked well for me. Pray that we can keep the ones healthy, find the source of the fever – more than likely my lungs – and get everything healed up quickly. I was comparing notes from my first surgery. I already sat up about 5 1/2 hours today. I didn’t do that for almost 2 weeks after the first surgery.
Tuesday, July 3
Got the results from the CT scan of my lungs. I definitely have fluid on my lungs. “Just a little bit.” So I will be taking 20 cc of Lasix for three days in a row. Still running a fever and pretty miserable from it. Everyone has said that the fluid on my lungs can cause the fever. The good news is that my white blood cell count is low. When Sarah came in today, she ordered a CT scan of the pelvis with contrast. After the not wanting to do it so badly last time, I was a little confused why they wanted to this time. Evidently it’s just “standard procedure” with a new pouch after you’ve had a fistula. Neither she nor Dr. R are concerned about a fistula. I’ll probably get those results tomorrow. Please pray for my lungs to clear up and for my fever to go down.
Wednesday, July 4
Hot. Like from the depths of hell hot. I was able to strip off my hospital gown. Of course, I didn’t have the call light. Doesn’t feel like the Tylenol is touching the fever. I had Tylenol extra strength at seven. My temp is still 101.8.
Thursday, July 5
If it’s not one things, it’s another. Got my fever down, but last night started getting nauseous. Full on dry heaves. Yuck. Jill and watched the firework from my window. Unfortunately, a storm had come through and delayed a few of the displays. But still a nice view. Got nauseous again this morning, so taking another dose of Zofran to keep things settled. Dr R came in and said CT Scan of pouch looked good. But Sue told me my WBC count went up. So, we’re not sure what’s going on there. Pretty mellow today due to the nausea. But popsicle day is tomorrow. Les H, I’m on IV Tylenol now. 🙂
Yesterday I received an email from Felisa Hervey stating that she was in St. Petersburg for a couple weeks. Felisa and I first met in 2003 on my very first trip to Afghanistan. She’s always been my hero. To hear her whole story click the link below. I emailed her and told her that I was in St. Petersburg, too. She came over today!
Saturday, July 8
Rough day today. Shaking, sweaty/dysreflexia, and an angry bladder. I looked back at my first surgery and I had the same symptoms at the same time. Thankfully, I took some Tylenol about a half hour ago and that has already kicked in and helped much more than expected. I’m ready to get in bed but the bed is not ready for me yet. Doesn’t seem to be working. We had to find another bed since the bed they brought in two days ago was… Well, just enjoy the picture.
Hey gang! It’s Angie. I’m going to write on behalf of our girl……Made it to sunny florida at 1am LAST NIGHT! Sooo-I arrived at Pasadena Palms around 10:30 this morning. Jenny was certainly ready for company and a change of routine. She got to eat first solid food yesterday! (So I went and got her some healthy juices and PIZZA!) Also got to sit outside today for a whopping 20 minutes….very good indeed!!! But still dealing with a low grade fever and dysreflexia……prayers appreciated that the new antibiotic will kick the latest finding of an infection in her stoma…CT scan in the morning to rule out any leakage of surgery site. One day at a time. Also “smoked” her breathing treatment!! But prayers, phone calls, cards and anyway to tell Jenny how much you love her go a long way. Speaking of that-she loves the care package….ESPECIALLY the head massager! You guys rock and are helping this sweet friend move forward to healing! #TimeForJennyToGetHome!
Sooooo…. Jenny had a CT scan this morning that revealed no fistula (yay!) but did reveal a small pocket of fluid in her pelvic area. They will be draining this in the morning with a CT guided procedure. There is thought that this could be causing the persistent low-grade fever. It’s back with a vengeance tonight and she’s not feeling too great. It may also be the small infection in her stoma that is causing the fevers….who knows. She just needs an answer so prayers please that somebody smarter than the 2 of us will figure this mystery out!!!!
Anybody want to come down for a visit this weekend? Allegiant Air flies straight into St. Petersburg everyday from somewhere in the country…..she really needs someone who can cover a few days until her friend Jill can come down.
Her spirits are tender….hoping once the fluid is drained it will diminish these yucky sweats associated with the fever…..potentially she could also be in pain with the swelling and her body is just kicking back
When they tested my blood this morning my hemoglobin had dropped quite a bit. They have to give me a unit of blood before I can go down. The blood still isn’t here. So it’ll be a while before the procedure.
From Angie: Hey gang! They just wheeled Jenny down to do the CTscan guided drainage of the seratoma. According to yesterday’s findings, it is a 4″ x 6″ sack!!! No wonder she’s been feeling like 🤢💩 They will also give her a bit of blood as her hemoglobin dropped a bit…..this seroma is very normal after a surgical procedure and they figure it has been growing since that last re-do. Dr. Rehnke made an appearance this morning and reassured Jenny that this should help give her relief on many levels…..
I’m back and Ang is warming up pizza from the other day. The procedure was easy on my part – helped by versed and propofol. I have a drain that’s already drained 80cc. We’re going to wash my nasty hair later then Felisa and her friend are coming for subs for dinner. Thanks for praying. Hopefully this is what was causing all the problems.
Had a great time/party with Angie, Felisa and her friend Jamie. We Skyped with Najiba, whom Felisa and I were both close with in Afgh. Best part – no sweating or fever all evening. Woo hoo. I feel like a different person from yesterday.
Update. Felt good yesterday, but started running a low grade fever again last night. Pulled the G tube and Penrose drain this morning. Please pray my body doesn’t run a fever due to pulling these tubes (which is common). I should start intubating tomorrow.
No fever last night, but WBC count is still 14. Intubated at 11:45. Went okay. Lots of blood, but that’s not abnormal since everything is still new and raw. Another CT scan will be done on Wednesday to see if fluid is gone. So I won’t be discharged Wednesday. Pray we/they figure out the source of infection. Also, I’m still taking Tramadol/Ultram for pain. I start shaking when I was past due by a half hour. Don’t like taking it, but the shaking is miserable.
Intubation went okay. Less blood. Now is the hard part of doing it twice at night and timing it with my bladder. 🙄 Still running a fever even with Tylenol. Big blessing to me was getting to pray for Bonnie (the aide) who had a rough day.
Intubation went okay. Started Flagyl due to possible pouchitis. Started running a fever again around 6. Tomorrow I’ll have a CT Scan to ensure the fluid on my abdomen is all drained. Unfortunately, I no longer have the g-tube, so I have to drink the contrast. Also looking into going to Frazier to regain my strength before heading home, if possible. We’ll see.
CT scan results showed a small pocket of fluid still in my abdomen. The drain needs to stay in a couple more days. They also did a CT scan of my lungs. They look great. All cultures have come back negative. Dr. Garcia says that I have a “mystery fever.” Will discuss discharge tomorrow morning. Possibly Saturday, but to be determined. I am looking at going to Frazier for two weeks once I get home. I know I need it. On top of that, drinking the contrast gave me severe cramping and gas. So much so that my blood pressure went up to 170/80. Crazy high for me. Of course, the nurse I had today wasn’t as concerned as she should’ve been, so I went above her and got someone listen to me. Definitely hoping for a better day tomorrow! Oh… I have a spot on my butt that’s not looking great. Might need to stay in bed a little bit more tomorrow. Prayer definitely needed and appreciated.
I’m doing well. Feel better. Details coming together to go to Frazier. Discharge tentative for Saturday. Drain gets removed tomorrow.
Today was a good day. Have not yet run a fever either in the morning or the evening. I’ve been able to eat a little bit more. Just a little bit, but improvement. I worked out in the PT gym. Nothing special, but nothing bad. My nurse Jewell lives up to her name – she’s a gem! I get the drainage tube pulled tomorrow. Pray there’s no auto immune response with a fever.
Discharge is officially tomorrow and it looks hopeful that I’ll go straight to Frazier. Pray that insurance moves quickly today.
Direct flight to Louisville on Southwest was canceled. We’re now re-booked on United, but with a stop in Washington Dulles. It’s only an hour layover, plus it’s a midnight arrival in Cincinnati. We have friends picking us up in Cincinnati and driving me to Frazier. Please pray we make it. Pray for my butt. I’m dysreflexic and almost passed out earlier. Fun times.
Landed at Dulles. Upgraded to first class.
(We arrived at Frazier at 4am.)
At Frazier and slept a bit. Less than 4 hours of sleep. Ugh. Already had PT and OT. Pray my appetite improves. I’m hungry, but nothing sounds good. Might be the medication.
Things are going well. I’ve had OT and PT already this morning. Just had a little lunch and my next PT scheduled at 1:30. I’m tired and would prefer a nap! I still haven’t caught up on sleep from the other night.
It’s 8:30 and I’m already in bed! Every time I move my arms it hurts! I got my “green band” today meaning I can leave the floor and go wherever I want when I don’t have therapy. I actually pushed up the front ramp which is long and steep to earn that bracelet. I have to be honest. I was shocked I made it up the ramp! It’s good getting to see Frazier from the inside out. I graduated to intubating every three hours today and I get to wait 8 hours tonight. Glorious sleep! Everything has gone well with the BCIR.
I am sore, exhausted and hungry, but nauseous. Dr. Castillo ordered something to increase my appetite. Just took it! Two more sessions of therapy today.
Everything working well. WBC was still 11, I think. But no fever.
I don’t really know where to start. Things are going OK. I’m not eating well. And I know that. But I still feel nauseous and really don’t quite know why. And then they just made me drink this horrible potassium. It was that or get an IV. Now I’m nauseous because of the potassium and shaky and my heart rate is high. Another words, I’m kind of in a whiny mood. I got weighed last night and I’ve lost more weight. Thankfully, my mom stopped and got me some Moe’s for dinner. Ate three tacos. It’s been hard to balance therapy with the lack of caloric intake. I took it easy today. I’m not really feeling sure that I’m completely ready to come home on Friday, but I’m not sure that I ever will. Started into baiting every four hours today. It’s been going fine. Also having to balance what foods to eat with how thick my output is. If the output is it, I need to irrigate, which I still haven’t figured out how to do on my own. But the easiest foods for me to gain weight with – pasta and rice – are the foods that make stool thick. That’s a bit of an overview. Pray that the wounds on my bottom continue to heal and that the OT’s can help me figure out a way to irrigate.