Hello All.

This is MoparBilly's oldest daughter Randi. (The one who doesn't go to drag week and wears holes in her rotors and breaks cams in her street car.)

It is day 10 of MoparBilly up here as an inpatient (pun intended) at CTCA.

Let do a recap and get every one up to speed.
4/10 - Diagnosis - Went to primary care doctor with back pain and concerns with 20-25 lb weight loss. CT scan found masses in pancreas and liver. Bilirubin @ 0.7
4/12 - Dad let the close family know at Bruce/Skippy's birthday dinner.

Thursday 5/9 (aka Day 1) - went to sign up for clinical trials with Dr. Tan at CTCA. There was concern with his now 50 lb weight loss, fevers, and he had abdominal pain. Labs were taken. Treatment plan was for a chemo port to be placed Monday.
Thursday 5/9 (Admission) - Labs came back showing elevated white blood cell count of 20k (possible infection/cholangitis), and Jaundice (bilirubin of 6.4). Treatment plan became celiac plexus block for pain management and a consult for a liver stent.

Friday 5/10 (Day 2) - Under went procedure for Celiac plexus block. Pain was much better controlled with block, fentanyl patch. Overall a good day and Dad/Billy got more sleep than he had in 2 weeks and things were looking up. Blood cultures/x rays taken to confirm signs of pneumonia as fever and chest congestion was reported.

Saturday 5/11 (Day 3) - Overall a good day. Physical therapist came to review and prevent deconditioning. PT recommended rest and short walks 4 times a day. Blood Cultures were still pending. He was on liquid diet as necessary post op, but there was growing concern with malnutrition and low sodium levels. MRI showed no biliary obstruction but did show increased tumor burden. X ray was still pending to confirm pneumonia in left lung. Highlight of the day was a wonderful visit with Darryl Frary. At this point Mom Holly Gebhart was also very sick from stress, cold, work and sadly could not join at the hospital due to fever/possible contaigent, so Rachael and I took lead on staying with Dad/Billy with occasional help from Benjamin who is also trying to help at home.

Sunday 5/12 (Day 4) - Sepsis/pneumonia/cholangitis suspected. Taking antibiotics & waiting on cultures and results. Tolerating liquid diet. Highlight of the day was a visit from John Bycroft and Ryan Giacone.

Monday 5/13 (Day 5) - It was a day of disappointment. Jaundice was worsening. We were expecting more information and more treatment only to find out Dr. Tan was out of the country (possibly in China). We were told it was less like that it was pneumonia, so the antibiotics were switched up to start fighting sepsis/cholangitis. Port placement for chemo was delayed. Sodium was still low and doctor were very concerned with malnutrition/inability to eat normally. At this point, we started keeping a log of food and medicine and other notes as days were starting to run together. Family members are now "debriefing" each other as we cross being up here to keep Dad on track with goals for eatting/movement/pain management. Bright side of the day was a short visit from Bruce, his grandson. We also a great respiratory tech Nicole who explained what we were fighting against with shortened of breath. Our excellent night nurse, also named Nicole, gave us some education and assigned us a very experienced day nurse named Brook.

Tuesday 5/14 (Day 6 - a day of ups and downs) We had an excellent nurse named Brook, who went above and beyond to make sure we got good information and he wasn't in pain. Nocor made him loopy, so she reached out to the pain specialist and we switched to dilaudid, but his blood pressure dropped so we doubled fluid IV were given to bring it back up. Understanding our growing concern regarding the liver/jaundice, Brook reached out to the GI specialist and a plan was made for additional testing with an endoscopy (camera down the throat) and a stent procedure depending on the results. GI even used a racing analogy when explaining possible benefits and risks. Brook got a hug from a grateful patient at the end of the day.

Wednesday, 5/15 (a long day 7) With the endoscopy and possible stent scheduled. Dad/Billy could have no food or drink after midnight. It was a anxious morning spent waiting for them to come get him for the scope. Finally at 10 am they came to take him down for imagining. He was placed in a waiting room and saw 3 other procedures done while I desperately tried to catch up on work projects I was behind on. He was finally brought back to the room around 4:30 pm, very groggy and sore but after a successful stent surgery which had immediately follow after the results of the scope.

Thursday, 5/16 (a busy Day 8) I had to go into the office to work but Dad/Billy got plenty of attention from Rachael as well as Mom (who had no fever) and the Oklahoma crowd who just made it into town: Bill, Brian/Boone, Dale, Darren who were all down to show their support by sorting and selling Dad's many spare car parts to help prepare for the pending hospital bills. After all that post op excitement, Dad was given some Ambien to help get well rested over the night...
This was a mistake. Ambien has several side effects Dad experienced. Most concerning of which were confusion, hallucinations, and mood swings which had us up every hour to hour and a half. It was a very rough night with neither him or I getting very much sleep.

Friday, 5/17 (Day 9) With our severe lack of sleep, irritation was running high for Dad and I. He continued to bloat, retain water, had a lack of appetite, and fatigue. Staff continued to encourage eatting and movement, but at this point both were a struggle with his swelling belly. We were also still concerned with lack of information. Rachael had gotten us the log in information for the CTCA patient portal and we were finally able to see the results of blood work and cultures taken days before. Dad had been getting blood draws daily with the assistance of ultrasounds each time. With more than a week of this, it was getting old and decided he should have a PiccLine installed to allow for the blood draws to be done easier (even if he was sleeping). Doctor also noticed swelling in Dad's arm and order an ultrasound. We continued to express concern with his belly/gas and an x ray & urine test was ordered.

The morning was anxious. While waiting we wanted to be taken for imagining, we to get Dad a shower. We waited 45+ minutes for our nurse to bring is towels and fresh gown before I asked another nurse. After the shower, we were told they would be coming to get him for the ultrasound. He had to go to the bathroom first and I asked the nurse for a few moments to get him cleaned up. She readied the wheelchair and disappeared. Once done in the bathroom, we sat 20 minutes waiting for her to reappear and take him down. At this point, I reached out to the nurse team lead, who told me imaging was running behind and it would be another 20 minutes. The lead came in to inform us of this and discover that his antibiotic, which should have been administered at 6 am, had not been popped and activated. He had been without his antibiotic for the last 6 hours. I was livid.

Dad remained in the chair waiting, exhausted and falling asleep sitting up for another 45 minutes before they took him down. Knowing that I was highly agitated, after the ultrasound and PiccLine, Dad sent the awesome tech to let me know what was going on and that these procedures at least were going smoothly.

On the way back up, in order to best position the wheelchair and transfer Dad back to bed, I move the recliner against the entry way wall. Our assigned nurse, who had kept is waiting and messed up the antibiotics, told me in couldn't be there or she would need to remove it from the room. I snapped at her. She had the gall to tell me "she didn't need my attitude." Fuming, I highly considered putted her head through the wall, but she lucky decided to leave the room at that time. Dad told me to sit down before I got myself banned from the hospital. Thankfully, we only had 2 hours til shift change and I decided I would let her live. The next time she came in, it was with the very handsome and jovial tech who talked to me while she finished up, so she must have had some survival instincts. I did apologize for my "attitude" before she went home and I highly doubt that they will assign her to us again during the remainder of our stay.
During this visit, the tech, Jon, weighted Dad first with the bed and then with the standing scale. Dad had gone from 125 KG to 140 KG. For those of you who don't metric, that is a 33lb weight gain over the course of 6 days. I was shocked and concerned and asked if we could see a doctor. Dad also expressed that he was at an eight out of ten pain level. We waited 45 minutes before I again tracked down another nurse to get him the requested pain medication.

By the time the doc came in, Dad had finally had enough of this very trying day and fell into some good sleep. His Dr came back to talk to Papa and I. He came in again concerned about Dad's eating and movement. He said that he would consult a nuerfrologist/renel/kidney Dr for the case but that we were taking Dad off fluids. He said that Dad would continue to retain fluid as he didn't have a stent. I politely freaked out and had to convince the Dr that Dad had already gotten the stent. I showed him the paper work we had received afterwards. Thankfully, I keep everything and had been keeping track because' despite supposedly having just got off the phone with the GI, he didn't know Dad had a stent!

He lamely wrapped up that we would keep an eye on liver function as that would likely be the concern of Dr. Tan upon his return to qualify Dad for the clinical trials.

Feeling frustrated, I was watching Dad sleep and noticed short quick breathes. Not sure if this was an issue, I stepped outside and happened to see our previous wonderful night nurse, Nicole, coming on shift. She came in to check on him, let me vent some frustration with our day and offered to reach out to the night shift doctor to come meet with us.

The night shift doctor very politely let me and Rachael vent about the events of the day. She actually examined Dad's swollen belly and said we would have to get and ultra sound to determine if the amount qualified for a drain procedure, but being Friday night that he could not get it before Monday unless it was an emergency. I was furious that the early doctor was more concerned with his arm and blood clot and moving than the abdominal swelling and discomfort, as he could have had something done about it. Now we were looking at waiting the whole weekend with him in discomfort.

The night doctor indicated that if we had made them aware of the swelling and the weight gain that it should have been addressed. She order an emergency ultrasound for Saturday and requested a care conference between all Dad's doctors for Monday. She left detailed notes for our day shift doctor on Saturday. She change out the Ambien sleep aid for a much more effective sleep/pain aid and we all got some better sleep going into Saturday hopeful.

At the end of our visit with the night shift doctor, I was still feeling frustrated with our day shift experience. I asked if the was anything we needed to do to better communicate. Nicole, my favorite night shift nurse so far, said we were doing everything right. She praised our log and said that most patients don't have strong advocates for care like Dad does with our family. She commended Rachael and I on our log and keeping track. It helps to know we are doing all that is with in our control to get Dad taken care of.

After a shower and a meal I was feeling much better. Papa (Bill Gebhart) was a world of help as we shared responsibility of checking on Dad through the early morning hours.

I will tell more once I get a little more sleep. Need to prep for day 11.

For those of you who want to help in some way -
Thoughts and prayers always help. He has been looking at what you've posted.
Dad is selling several car parts to help cover pending hospital bills. You can get in contact with my uncles about what's available.
Dad could use a few visitors at the hospital, but we don't want to flood him.
And we are trying to get his back yard cleaned up for him before he comes home. We could use some help on Monday.
Feel free to email me @ Iamafish101@aol.com for more information.