Saturday 4/28 - It was reported that it had been a bad night for Courtney. She was up, off and on all night, going to the bathroom. This was not at all a surprise with pancreatitis, but didn't help her get the rest she needs.
I was really feeling I should go be with Courtney and help out, but I was letting the practical, (Mike was there) logical side of me override the emotional thinking.
Stevie spotted a 'big bird'...
The roofers were back at it at 8 am.
It was going to be a beautiful day.
In the back, on the roof above the future sunroom the roofers were working on the sky lights. We were surprised to see that this ceiling was already insulated.
I ended up taking a selfie without knowing I was being reflected in the window of this photo.
Joe was chilling (actually sunning)on the deck with Maggie. When I went out to plant my flowers, I moved Maggie to the grass near me.
It felt good to be outside, digging around in the dirt.
Here is one of my new planters.
I left mid afternoon, taking this photo of the roof progress. I like the new roof color, and will sleep better knowing the roof is no longer leaking. They had to replace 12 rotten roof boards. What can I say?
I went to the barn and had a nice ride with Jan. I have been at a loss for what words to pray, so we prayed together while we rode. Below is another planter.
It had been another up and down day for Courtney. She had had persistent diarrhea (another common side effect) and some vomiting. They had gotten a stool sample to test for c-diff. The preliminary results were negative for infection, but they would continue to observe the culture. They also did a fine needle aspiration to get a fluid sample (WOPN) of the walled-off-pancreatic-necrosis fluid
(the dead pancreas) to make sure that wasn't getting infected either. She was pretty groggy after that due to the anesthesia. The doctors were really pushing the feeding tube because IV nutrition can cause infection and they wanted to get her gut moving. Twice she had a "MEWS" (Modified Early Warning) score that caused them to be mandated to call the rapid response team. There was a lot of activity but ultimately it was the equivalent of a false alarm. They gave her a beta blocker to slow her heart rate and try to trigger the rapid response less but she still ended up getting sent back down to ICU.
Sunday 4/29 - Courtney had a rough night of puking and nightmares, and with little to no warning on vomiting or diarrhea. They said that this is her body trying to get all of the "stuff" out like the pain meds and the antibiotics. She was becoming more active and so was the gut, which was good. An antiviral medication was added to the mix.
Mike reported that she was asking for me, and that was all I needed to decide to go to Salt Lake City. Joe got me a flight out, leaving late afternoon.
I packed a bag, did household chores,
My travels went well, but long into the night. Unfortunately, it was not such a good day for our precious girl. She still suffered from vomiting and diarrhea, which are persistent symptoms of her pancreatitis. The pancreas fluid sample would take 48-72 hours, so we were still waiting on that.
Since I spent the week in Salt Lake City with Courtney in the University of Utah Hospital, I will just post photos of the beautiful campus and town which I was able to see during my walks.
The Mormon Tabernacle in Salt Lake City |
I arrived at Courtney's bedside, straight from the airport, at 2 am and found her in a bit of a panic. She was delusional, rambling strange things, her heart rate was up, and she had been vomiting or nauseated and unable to sleep. They were just getting ready to insert what I thought was the feeding tube, (which the medical team had earlier discussed trying again). I talked with her, reassured her it wouldn't be as bad as the NG tube and then discovered it WAS the NG tube. I had to hold my tongue and speak no words. I guess it helped seeing me because Courtney was ready to give it a try.
Front entrance to University of Utah Hospital |
They got the naso-gastric tube reinserted on the second try. Courtney was so delusional it was hard to calm her. The Dr. was in during this process and said this is very common with sleep deprived patients. Then they took her down to do a scan. I went with her because she didn't want to be alone. Once back to ICU, the ramblings and up-set continued. Finally with the room lights out and things quieted down, so did Courtney, sort of. I had finally sat down for the first time since walking in the room and she tried to pull the tube out of her nose. She almost got it all the way out before I stopped her. Luckily the nurse came right in and got the tube back down with out more trauma. But then they tied restraints on Courtney’s hands. It was heartbreaking to see, and literally, there are no words.
Spring had sprung here, parking ramp behind hospital. |
It started snowing about 9 am and was really coming down for awhile. Notice beyond Courtney's loaded medicine pole, it was nearly white out conditions out the window. This only lasted for a little while.
The morning had been busy, with Courtney visited by doctors and then psych consult team a couple of times. They confirmed delirium due to lack of good (if any) sleep. This had caused the hallucinations and confusion she had been experiencing. She was on a few nausea meds due to having the NG (suction) tube in. They didn't want her throwing the tube up. The tube was doing what it was supposed to do and had prevented her throwing up as long as I had been there. She was (still is) being monitored very closely and was (is) in good hands.
Around noon I took a taxi to my AIR B&B due to the weather and because I had my suitcase. At first I could not get anyone to answer the front door (which was locked). Finally, Dawn, a very nice lady who rents the basement apartment came to my rescue. Ricks, the owner (operator) was nowhere to be found and we were confused as to which room I should go in. Because I was so stressed about Courtney, absolutely exhausted, and just wanted to go to bed, I had a bit of a melt down. 😢 Dawn and her husband Mike were very compassionate and understanding and 'found me a room at the inn.'
The AIR B&B was a beautiful home, (old sorority house) full of fine art, but all I cared about was a bed. Sleep came fast and lasted four hours. Meanwhile, Mike was with Courtney back at the hospital during the day. She did some physical therapy to get her moving and get some good circulation going. Dr. Narula was concerned that there may be an infection developing in her pancreas due to an increasing white blood cell count. The possibility of having to do a drain instead of staying the course was there. This was not preferred but would be done if necessary.
Back on the home front in Fairfield Glade, Joe and Patty wrangled Amiga and Zorro for the vet visit. Both horses were reported to have been on very good behavior.
I walked the one mile trek up the hill, enjoying the snow covered mountains. I don't know if my lack of sleep or the altitude made me so winded. I grabbed a quick dinner once at the hospital and then went up to Courtney's room.
Courtney was sleeping when I got there, with a slower and deeper breathing rate, which Mike found very promising. Keeping Courtney calm seemed very important and helpful to her, so we planed to have one of us in her room as much as possible. The NG tube really seemed to be making sleep much more possible. Courtney seemed to be accepting and getting that and it would help her accept the idea of the feeding tube later. She was still on the broad spectrum antibiotics and antivirals and they continued to monitor her white blood cell count for signs of infection. Patience was getting harder, but we had confidence in her and the team while still in a wait and see period and giving her body time to heal.
University of Utah receives critical patients from all over.
There were several heli-pads and helicopters in and out.
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Mid-morning, technician Tammy came to insert the naso-jejunal feeding tube. It was to be a quick, easy procedure. Courtney was listening to music and tuning the whole process out. The tube made it down to her stomach fairly easily, but then presented great difficulty (with it looping inside her stomach) and not going down into the intestines. The end had to be positioned in her small intestines past her bile duct. Tammy tried, and tried, and tried (for nearly 30 minutes). I decided to pray, but no words came to mind. At this point I texted Joe to contact all the prayer warriors, which he did.
It wasn't even a minute after prayers started that the tube finally went down into Courtney's intestines. Praise God. After a little more work and a scan, Tammy felt she had the tube in the correct place.
But then, as Tammy was packing up to leave, Courtney threw up a bunch. Tammy said she wanted to check to be sure the tube was still placed correctly. So the metal guide wire was put back in through the tube, and wouldn't ya know, Courtney's vomiting had caused the tube to walk out to where we didn't want it. Tammy tried to coax it back, which it went some, but then said sometimes it's best to just give it a chance to sit and try to reseat it later.
Mike arrived and soon I was on my way down the hill, back to the AIR B&B, to sleep.
It was a pretty day, so I lingered in the sun and fresh air, walking a different route 'home'. After a nap and shower, I took an even longer walk coming back to the hospital.
Beautiful walkways on the U of Utah campus. |
Courtney had a quiet afternoon. She still had occasional diarrhea, as expected. Her bile suction had really slowed down so they pulled the NG tube out, much to her liking. They also took an x-ray to confirm that the feeding tube placement was correct, and gave the go ahead to start nutrition, adding some fiber to combat the diarrhea.
Having received nutrition for about two hours with no negative reaction, we were looking forward to a peaceful evening, and real progress the following day.
Wednesday 5/2 - Courtney had diarrhea again, all night. Since the bile was no longer being suction from her stomach it seemed to be moving straight through her digestive tract. She couldn't make it to the toilet in time, it just came without warning. She had probably ten mishaps. So her sleep (as well as mine) was interrupted with lights on and getting cleaned up.
Once daylight came and activity picked up, a
respiratory therapist came by and I mentioned my concern about a little cough Courtney had developed. The therapist said that this was actually a good sign. Her lungs were getting stronger and able to cough the normal occurring fluids and mucus up and out.
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Everyday there were different volunteers playing the piano. |
One of the many Magpies I saw during my walks. |
Courtney slept most of the day today, finally getting some good rest. She still had some delirium but it was expected to wane as she got more meaningful rest. They gave her Imodium through her food tube so her diarrhea had slowed significantly and she stopped vomiting. She still had some nausea, but it was related more to adjusting to the feeding tube formula and having it in general.
I left the AIR B&B early and did some sight seeing on my way up the hill to the hospital. The clouds were clearing which left an interesting sky. In the right photo you can see Great Salt Lake off in the distance.
Courtney was still dealing with hallucinations and delirium because she hadn't really had good, consecutive hours of sleep. During the psych visit a day ago, the doctor had helped Courtney sort through her fears, what was real and what wasn't and that her confusion was not abnormal for someone in her situation. Mike and I continued to ground Courtney in reality when she started to have hallucinations.
Magpie following me up the hill towards the hospital. |
Thursday 5/3 - I had reschedule a dentist appointment for the day but had to keep the farrier, so Joe held both horses for Tom. Look at silly Amiga nuzzling Tom while he worked.
I didn't 'go to bed' until a little after 2am but then slept well until almost 5:00, when Courtney got up to use the toilet. I was barely hanging in there. She was wide awake, very coherent, and gave nurse Justin the stats for the night... telling him the number of times she used the bed pan (1), threw up (2), got up to use the toilet (2), and accidently pulled the O2 from her nose (3). Got to love her analytical brain.
As Courtney drifted back off to sleep she went back into a confused state and was imagining things. I had to chuckle when she was complaining about being stuck here in the hospital and she said "Ain't nobody got time for dat."
Curious Magpie seeming to follow me. |
Courtney continued to have delirium symptoms when sleeping during the day, but was pretty sharp when awake. She was completely taken off the intravenous (TPN) nutrition and was fully on the feeding tube. Her diarrhea and vomiting were under control. At 3 pm she did physical therapy, but was pretty exhausted by the end of her walk. She was really trying hard, with the goal to get home.
I generally had only been able to sleep a few hours at the AIR B&B. My biorhythms and the daylight just didn't permit long hours of sleeping. So once awake, I decided to head back to the hospital early. I walked an hour extra, doing some sight-seeing and then once at the hospital, sat at the cafeteria, drinking hot tea with a sweet treat, and tried to start this blog post. So much had happened and I wasn't sure where to start or how to approach this whole event.
I like how these boulders are used to make a retaining wall. |
Friday 5/4 - Courtney was moved out of ICU, to the Acute Care wing, after the 7:30 morning shift switch, and a full time nurse's aid was assigned to her. I was exhausted, but needed to hang in there and help get Courtney moved into her new room. I made sure all her stuff was loaded onto the cart and followed her to the new room. I met the new nurse, listened to the briefing from the ICU nurse, and added a few comments. Then I went up to Courtney's former unit, where she had been before she was sent back down to ICU, and got her balloons and flowers. Mike arrived and I headed 'home.'
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On the walk down the hill, I was so tired and the sun was so warm, I decided to take a nap on a bench in this field. Well, maybe 30 minutes later, I was woken up by Frisbee golfers. I watched awhile (video). It looked like so much fun, one of them let me give it a shot. I discovered these discs do not 'fly' like a regular Frisbee.
An earlier view from the hospital entrance. |
At 7 pm I went with Dawn and her husband to pick Britney up at the airport. What a joy to see her. She was hungry and exhausted so we grabbed dinner at the hospital cafeteria before going up to Courtney's room.
I could not hold back the tears as Britney leaned over Courtney's bed, holding her hand and weeping, and telling her how much she loved her. No words can describe the tender moment.
This is kind of what Courtney's new room looked like. There was a couch that made up into a single bed and a chair that reclined. Each room also has had a white board on the wall opposite the end of the bed. This is where notes were made, diagrams drawn, questions written etc. and greatly helped with the communication process.
After Mike headed to his hotel, Britney and I (with aid Kendra's help) worked at setting up the extra bed for the night. We had ourselves laughing a couple of times, trying to get the couch bed out of the way so Courtney would be able to get to the restroom easily.
It wasn't long before lights out and I fell asleep while Britney sat watch over Courtney. Kendra was also assigned to stay the night with Courtney, which was very helpful. After a few good hours of sleep I gave Britney a turn on the bed, because she too was thoroughly exhausted from her 17 hours of travel and being up for 21 hours straight. Courtney's new room was definitely more comfortable and had a better view than the one down in ICU.
Unfortunately, the night before, Courtney had not responded to the sleep aid / anti anxiety drugs the way the doctors thought or intended, so some adjustments to her medication at night were made to try to help her sleep and to reduce the delirium that she was still experiencing. She actually slept noticeably better. It also helped having Britney and Kendra in the room. Courtney did throw up quite a bit after an increase in the feeding tube flow rate that was made in the middle of the night. This forced them to slow the feeding flow rate back down. Courtney's body needed more time.
Saturday 5/5 (Cinco de Mayo) - Courtney's stomach seemed to be a bit firmer and a bit more distended. When the surgeons made their morning rounds, they decided to stop the feeding tube and go back to the TPN for now to see how she would react. Her GI tract just wasn't working fast enough to keep up with the tube.
A little later they did an X-ray, concerned that Courtney was retaining liquids and again they did a straight cath to see. There was not much urine retention. The earlier scan could be a false positive given the pancreatic retention also occurring, but they were taking the more cautious route.
The x-ray results showed a gas build up in Courtney's stomach as well as some bile. They re-inserted a small NG tube to relieve the build up which would reduce the pressure and distention in her belly and allow her GI tract to work. This was to get her back on the feeding tube.
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Looking out at the garden circle drive at the front of
the hospital while another helicopter lands.
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Saturday 5/5 (Cinco de Mayo) - Courtney's stomach seemed to be a bit firmer and a bit more distended. When the surgeons made their morning rounds, they decided to stop the feeding tube and go back to the TPN for now to see how she would react. Her GI tract just wasn't working fast enough to keep up with the tube.
Another look at the flowered walkway. |
A little later they did an X-ray, concerned that Courtney was retaining liquids and again they did a straight cath to see. There was not much urine retention. The earlier scan could be a false positive given the pancreatic retention also occurring, but they were taking the more cautious route.
Kids playing on the rock sculpture. |
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Courtney spent the day sleeping, which helped the ICU Delirium to decrease in intensity. The doctors (nurses actually) were treating symptoms as they arose while Courtney's body did it's work to heal. We were thankful that she was in such good hands but had to keep reminding ourselves that this was going to be a time consuming process while her pancreas mended and she healed.
Jan and Dave arrived in town and came to visit at dinner time. They brought Courtney a bag of cosmetic goodies, and the rest of us a bunch of treats. It was so good to see them and to chat for awhile.
Sunday 5/6 - Courtney had done a lot better overnight. She slept more peacefully, was fidgeting way less, did not do as much talking, had a more stable temperature, and was breathing slower and deeper. I got some good rest too while Britney was up with Courtney, and then I let Britney nap. Early morning, after they did an ultra sound of the bladder, they did another straight catheter, which confirmed that the fluid build up seen was not in the bladder but in the belly. The day's care would be to monitor and support Courtney's body and give the pancreas more time to rest and settle down. The intestines were not ready for the feeding, but it had been worth the try. So intravenous feeding would now let Courtney's gut rest.
Jon Huntsman Center (basketball stadium) |
Doc Nunez visited again after Britney and I left to take a nap. They decided to do another CT scan to get a look at what is going on. There was discussion of the possibility of having to do an external drain, which is less than ideal for her recovery but may be necessary given that the pressure is preventing her GI tract from working properly. Doc Nunez did not want to do the drain if he could help it.
After sleep and shower, Britney and I got checked out of the AIR B&B before going back to the hospital. The CT scan had still not been done, so we inquired about it. I got an early night nap and then at midnight they started the prep for Courtney's CT scan with contrast which meant 900 ml of a barium solution had to be pushed down her feeding tube in 90 min (or as much as she could tolerate). Her gut could only handle 500 ml in that amount of time which is a lot more than the equivalent of the rate the feeding tub was going. She did great! And the scan got done. Then before 3 am, I had to head to the lobby to catch a taxi to the airport.
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