Phil's Story ~ Inpatient Medical Rehab

Being down in the Inpatient Medical Rehab at the University of Utah has been it’s own new ride of ups and down. It was so frustrating even figuring out what the options even were, trying to get Phil closer to Provo, and then learning about what the different facilities had to offer. It was also frustrating trying to figure out what Phil would qualify for. A center in Provo that was in network told us that Phil could come and do the therapy he needed there. We were thrilled about that because it was less than a mile from his parents house. But as we fought to get him there we slowly learned that he wasn’t even close to qualifying medically for something like that. So unfortunately we felt like we had been led on and we all got our hopes up for the feeling of being closer to home.

The next option was an acute rehab center. In a place that like Phil would have to be able to endure 3 to 5 hours of therapy a day. At one point the orthopedic department told us that he would not qualify for it because Phil would not be weight bearing for 3 months.  At the same time the physical therapists that were seeing Phil on OTSS were pulling for him to be transferred down there.

The last option and what our case manager kept insisting we do was a Skilled Nursing Facility. Seriously? They want a 31-year-old man to go to a SNF? I don’t think so. But at that point it kind of felt like this was our only real option. But I wasn’t going to make that Phil’s option. He would not get great care at a facility like that. Certainly he would not as much medial attention and a lot less therapy.  

Somewhere in the frustration in finding out that Phil would not qualify to be in Provo, we did hear that our insurance had given the verbal approvable for care at the University of Utah inpatient hospital. We were so determined to avoid a nursing facility that I went down to the rehab center, had a little tour, and asked some questions. It went really well. I felt confident in the care that Phil would receive both from a medial and therapy standpoint. I was told that they had private rooms and that we could just say that a private room was so important that it would be a deal breaker for us. Another pro would be that I could still stay the night with him if we felt like that was still helpful. While the U of U hospital was still in Salt Lake and quite a drive from Provo, I liked that he would still be followed up by all of the doctors and physicians that he had already been seeing. We discussed the options and it felt pretty good to us.

Then when we were talking seriously about going down there with our case manager, who was really not very helpful and often made everything more confusing, our hearts sunk. We were told that there was no way that Phil would be able to have a private room. She told us that they had rooms from one to three other patients or roommates. What!?! Who would ever want to share a room while they are fighting to get through pain and sort through every single emotion and struggle that they are facing? For a little while it felt like dooms day. Then that turned to panic to hurry and find another option. I got on the phone and started calling other hospitals in Utah County to see if they a) had an acute inpatient rehab center and b) were in network with our insurance. It turned out that no IHC establishment was covered by our insurance. We also later found out that most acute rehab centers don’t even offer private rooms. So we were stuck. It was painful to watch the emotional pain Phil was struggling with.

Something had to be done. This was not going to be good for Phil. He was still learning how to manage his pain, still not hardly sleeping, and the biggest factor was his anxiety. I had our case manager take us down to the charge nurse in the rehab unit and I talked to her for about 20 minutes. She explained that they only had a certain number of private rooms and they were first reserved for patients who needed more medical attention. Then there was a list of people who had requested a private room. So there was hope that Phil could eventually get one, but since he wasn’t going to be there too long, it didn’t look great. I expressed my concern to her mostly about Phil’s anxiety, how that was affecting him and how I thought it would. She was very compassionate and understanding. She said she would do her best to do some rearranging so that Phil could at least have his own room for the night. It wasn’t the best news to bring back to Phil, but it was all I had. She pulled through for us and he’s had a private room ever since. It’s not a great room, pretty lousy actually with a terrible view, but it’s our own. And we have been so grateful.

Since being down in the Inpatient Medical Rehab Phil has continued to have his ups and downs. The first couple of days were extremely encouraging. They found Phil a cushion that helped him to be able to be comfortable in a wheel and power wheel chair and everyone was very impressed with how strong Phil was and what he was capable of. In the evenings he started to hurt really bad and spiked his usual afternoon fever. So those were a little rough, but he was doing great. 

The first Monday evening that we were there, Jade and Kelly Poppinga, a football coach for BYU, surprised Phil with a visit. Kelly even brought 6 other current BYU football players with him: Harvey Langi, Fred Warner, Mitch Matthews, Kurt Henderson, Tejan Koroma, and Sione Takitaki. It was pretty incredible to see Phil light up and to watch the interactions. They joked, spoke frankly and seriously, and gave each other a hard time. Each one of them were impressed by the injuries that Phil had sustained and even more impressed by his attitude and determination to heal and recover. We are so grateful to those guys. I am sure that they all had other plans that evening, things that were much more fun than visiting a couple in the hospital. But they took a couple hours out of their day to reach outside of themselves and help another. They even crossed enemy lines at the U to do it. They brought Phil some gear and a signed BYU flag. Even Bronco sent a card of encouragement for Phil. It was a great evening and I was glad to be able to witness and be a part of it.

Then things started to go downhill when the GI issues set in. It was a horrible night of gas and constipation pains mixed in with all the terrible ways of trying to help someone have a bowel movement. I hope one day we’ll be able to forget how bad it was. Honestly, in this journey so far I can name three instances that have by far topped anything else how horrible they were to watch Phil have to endure. One was the initial demonic hallucinations, the second was the nerve pain after the surgery on his right leg, and the third was that day with all the stomach issues (and there would still be another to come later). The next morning Phil had a wonderful nurse, Sadie, probably the best we’ve had, and she helped the situation and we finally got Phil feeling a little better. But it took what felt like forever to make nay improvement. It was even so hard to get him some Tums. It took 3 hours and when they brought it was one measly chewable.

It’s also frustrating because as soon as one problem seems to have resolved or lessened, another one pops right up. We finally figured out why Phil can’t sit, where the pain is coming from that’s making it unbearable for him to sit upright. It’s a very large and solid as a rock hematoma right in his groin, aligned with his sit bone. It’s painful to him when he lays, but it’s impossible to sit on. We talked to the Orthopedist and he said it’s not a big deal; just annoying and that over time the body with reabsorb the blood and diminish the hematoma. Well it got worse, not considerably, but enough for me to notice a physical change in appearance and it was causing Phil more pain all the time.

Thursday evening a couple of Phil’s best childhood friends, Dane Runia and Garrett McGuire, came by to visit him. It was so good for Phil and so fun for me to watch him recall and reminisce about their past. It was also really good to be able to share the hard experiences Phil had been through. All of their families know what hardships and heavy trials feel like. They have all lived through some very difficult things within their own families. It was good for them all to be able to empathize with each other. We were both so grateful that they made the time to come up and spend a few hours with us. It was a great gift they gave.

With the increased pain of the hematoma and some more bad gas pains, Phil was in a pretty low point Saturday evening. The boys, Trenton and Justin had just visited early, which is always fun to have them for a short time. As more time passed the thought occurred to me that Phil needed another Priesthood blessing. I asked Phil if he wanted one and he immediately said yes. I also asked him if he wanted family to give him the blessing or if he would just like to ask the hospital volunteers because they would be able to be there much quicker. He preferred family and then I was immediately stressed. Phil’s dad and brother were both out of town. My brother Justin was just there and on his way back to Provo (or so I thought). I hopped on my phone and looked up the location of Justin on the Find Friends apps and he was still in Salt Lake eating dinner with the kids at I Hop. I called him and he was more than happy to run back up to the hospital to help with the blessing. That meant I still had one more family member to track down. Phil’s uncle Kenny lives in Salt Lake and I tried to call him but the number I had was old and disconnected. I tried calling both of Phil’s parents for an updated number but they were on their way to Idaho and didn’t answer. I then called Phil’s Grandma and she gave me the number and Kenny answered right away and was able to zip up to the hospital in no time.

In my eyes it was a miracle that it all worked out so well and so quickly. The fact that Justin was still in Salt Lake saved a ton of time in getting the blessing more quickly. And Kenny is very busy with work, family and church responsibilities, so I find it pretty interesting that he had no obligation the moment we called him. They both arrived at the hospital within 20 minutes. I believe that Heavenly Father knew that we, especially Phil would need that blessing and was already preparing the way to make that happen. I am so grateful that Phil was able to receive the blessing and that our eyes have been open to see the tender mercies of the Lord. He truly loves us, cares for us and is constantly helping and answering out prayers.

The blessing allowed Phil to be able to have a better and calmer evening. He got a little relief from the stomach pains he was having. And I am positive that the blessing allowed progress the next day in helping to solve some of Phil’s diagnoses.

The next day, Sunday, Phil’s hematoma looked even worse. I made the doctors look at and it caused them to second their diagnoses. Dr. Erickson ordered a CT scan. While we were waiting to hear when the scan would be, a LDS couple knocked on our door wondering if we wanted the sacrament. A different couple had done the same thing the week before up on OTSS. It was a bright spot then and it was again. They shared their testimonies and their admiration of us. The Brother blessed and passed the bread and Phil asked if he would be allowed to bless the water. It was neat to listen to that man, who was worn down mentally, physically, and emotionally still retain so much power spiritually. Even with everything that he had been through so far and even with what has been taken from him, even if just temporarily, his testimony and priesthood cannot be taken. He used the priesthood he holds to bless the water for himself and me. I was a sacred experience that I was humbled to be a part of.

 A little before 1:30 we heard they were ready for the CT scan and transport wheeled him down. I was able to go with him and even help slide him on to the board. It only took them about 5 minutes to run the test and then we slide him back onto the bed and back upstairs. A couple hours later we found out that the hematoma was actually not that, and instead it was a perirectal abscess, something that Phil has bad before. Only this time it was very close to the skin, right under his sit bone on the right side and visible from the outside. The CT showed that he still had a hematoma but it was up further in the cavity of the pelvis.

         Not much later a resident came to look at the abscess, which was progressing at a very fast rate and looking much more painful and infected. He suggested two options for removal. One was surgery, which was the likely option for Phil and would be done the next day, or to place a drain. He explained that he would have to speak with the attending to confirm the plan. An hour later the Attending popped in the room and asked if they did the procedure. We were very confused. She explained that a team would be down soon to do a bedside procedure. We were shocked because that wasn’t even an option that the resident had mentioned. It sent Phil into a panic. He’s been struggling with anxiety here in the hospital and because now he had no time to mentally prepare we were off to a bad start.

         Later three residents came in. The same resident (which we learned was a newbie junior resident) one senior resident and then another resident and member of the trauma team that had helped treat Phil up in OTSS. They explained what would happen. There would be some pain initially when they were injecting the local anesthesia and they compared it to getting a shot in the roof of your mouth; it hurts pretty good for a second and then it all feels much better and numb. Then they said after they numb all the way around they would slice it, it would drain and Phil would feel immediate relief. After they would swab and clean it out and then pack it. Everything from start to finish would take 10 minutes.  

         The two more experienced residents left the junior resident by himself, which seemed a little odd to me that three of them came in and then only one stayed. But oh well right, we all trust doctors…

Nothing about the actual experience was like anything they described as far as the pain went. I’m not really sure how to describe this event. It was traumatic and terrible torture. Phil felt every touch, pin prick injection, cut and anything else he did. The numbing process went slow and painful. The resident gave him fentanyl, which had no effect, and then ativan that also did nothing. I can’t tell you how much pain Phil was in…and he’s TOUGH! It was pure torture. The thought passed everyone’s mind who was there (Phil’s parents were out in the hall) that Phil’s experience was comparable to the story of Joseph Smith and the leg operation he had on back in 1827. 1827!!! I mean seriously. Medicine has advanced far enough to do these kinds of procedures to not be in this much pain. At one point, Phil’s Dad came in and laid into the resident a little bit. He finally called the senior resident, who came and looked at Phil, who then called the attending.

After that it was surgery, backpedaling and apologies offered by the senior resident. It was tough to listen to because a mistake had been made, one that really only effected Phil, so it’s easy to apologize, right? Shortly after they came and took Phil down to surgery and into the holding area. There, many doctors gathered around Phil and discussed surgery. I mentioned to them how Phil was able to roll onto his left side, but not his right because of the extensive work that had been done on that side. After a few minutes of me talking with the doctors the attending decided to call the on-call orthopedist to discuss his injuries. It took everyone 10 more minutes to come up with a plan on how to position Phil during surgery because of all his injuries.

Surgery was pretty short. He was out within 45 minutes of when they took him from the holding area. The actual surgery or procedure only took 15 minutes and they were happy with the turnout. There was still puss and infection that needed to be drained out, then they cleaned it and packed it. Phil’s parents were able to say goodbye and then left as they were rolling Phil back up to his room. There he was pretty tired from the anesthesia but he was so thirsty. He kept waking up demanding water, but his nurse Flo (who was amazing and our favorite night nurse) didn’t think he was awake enough to be able to drink. Phil kept suggesting he was and once we were able to keep him awake for a couple minutes he gulped what was suppose to be a sip. After that he was a real ham, giving everyone (the nurse, aid and myself) a hard time for one reason or another. A little later his bladder was scanned which showed that he needed to be cathed. I joked that we should bet on how much was actually in there. He said in his sleeping drugged state, “Yeah! And the winner gets a big nice cold jug of ice water!” Haha!! Remember he had been on a fluid restriction for a few days and all he had wanted in those days was water!! Flo and I laughed a lot but Phil remained jokingly stoic in his goal of getting some water. So Phil, Flo and I all made bets on how much was in there. It turned out that Phil’s guess won, but sadly we couldn’t give him the prize.

He slept well that night wearing off the anesthesia and was feeling pretty good in the morning. He said that abscess felt tender, but better. Later that afternoon they came in to pull the packing out. It took them about 5 seconds to pull it out but it hurt really bad. After a couple minutes he was feeling okay again. The nature of those abscesses is that they drain and heal from the inside out. So he was left with a gaping hole, probably 2 cm wide that gradually drained all day long.

The following week is really mostly a blur. Our Facebook updates will be better to fill in the rest of those days. Phil didn’t do much therapy on Monday since he had only gotten a few hours sleep, just had surgery, and was still recovering from the pain and trauma of the previous night. As the week wore on Thursday, the 23^rd remained the goal discharge date. We needed to find a car to travel home and finally the insurance company agreed to pay for a rental for us. We got a minivan where the seats would all fold into the floor. Then we shipped a tri-fold mattress to Provo to lay in the back for Phil to lay on for the drive home. The day before we left we found out that the mattress had been delivered to Driggs. That was a bit stressful but before long we were able to find another that we could borrow and it worked out.

I think Tuesday and Wednesday were really difficult for Phil. It was the first time that he was faced with depression. I knew it would come at some point, and quite frankly I was surprised that it hadn’t happened sooner. After all we had already been in the hospital for more than 3 weeks. It was difficult to watch Phil feel so hopeless, down and frustrated. Those are qualities that don’t fit into his disposition. Phil realized that as well and made him even more discouraged. We managed through those days. We had a good friend, Vince, visit for lunch on Tuesday and that was a huge blessing and lift to Phil. They had really great conversations that will be a benefit later on to recall upon. It was just also a good distraction for Phil during that hard day.

By this week Phil and I had a pretty good system set up where we really only needed the aid to charts information and the nurses for medications. We were able to handle everything else on our own. Phil appreciated that, my help and willingness, as much as I was happy to be able to do more and help keep his dignity a little more intact. Plus it was really good practice for when we would be home.

Wednesday night Steve and Rachel came up for a last visit. They brought us some yummy stuff and it was great to have some company and distraction from the longer evening hours. I also had them help me load up a bunch of stuff in the truck that we wouldn’t need immediately at home so we couldn’t be overfull on our drive back in the minivan. Then Steve drove the truck back to Provo.

Thursday morning I got started early in packing up the car and stealing a few pillows. Stealing? I think we’ll have paid enough to the hospital to afford 6 pillows (and a blanket). I didn’t really ask anyone if we could take them, I just hauled them out two at a time. And it turned out that we really needed them, both for the drive and the way home. We had our absolute favorite day nurse, Sadie. She was amazing and will probably never know what a blessing she was to Phil. Phil was comfortable with her and trusted her because she actually listened to him. She spent time talking with him to try to understand his frustrations and come up with a plan to help. We are so grateful for her. Before we knew Pharmacy, Dr. Erickson, and Sadie had gone over their different portions of discharge and we were headed out the doors. It was a crazy feeling, but mostly wonderful. Sadie and Aaron (Phil’s PT) helped load and situate Phil in the back of the car. Then we said goodbye and were on our way.

We stopped 5 minutes later, just out of the parking lot to hook up car chargers and then again once we had been on the freeway for about 10 minutes. We had to rearrange Phil so he was traveling forwards, not backwards because it was making him carsick. A few hours into the drive we stopped for a potty break and to organize the meds that Phil would need on the drive. We also wanted to pick up some coke for Phil to help calm his belly, some tums and a couple other things. Sadly the gas station we stopped at was under renovation when I walked in, we headed to the next town, Malad for another stop. After Malad Phil slept for a couple hours, pretty much until just past Rexburg. And we finally made it home after 5 hours.

Before I go with the homecoming, I just have to mention a little bit about the drive from my perspective…I guess all of this is from my perspective though. Any ways, I was terrified to come home. I knew it would be really good to be at home rather than hospital. That it would help us all feel more comfortable. But I was afraid of a) not having medical staff to help and b) doing everything myself. I was also really terrified of the drive. There was no way Phil would be able to tolerate sitting in a seat for more than 10 minutes which meant that he would be laying on the floor, unbuckled during the ride. And it’s not like a healthy person who has all their strength and control over their bodies. So the night before I was pretty worked up about it and sick to my stomach. But the actual drive was really calm. I remember thinking to myself how I felt very capable and how smooth everything was all going. Phil may have felt differently, but I was very grateful that I was able to feel the power and lifting of my burden that day which was the result of many prayers being offered for our family and specifically for our travels home.

Many emotions crossed through my mind as we turned onto our road and the tears I had were probably a combination of gratitude, longing, nervousness and just the feeling of love that comes from being home. It was just a bit overwhelming. We sat in the parking lot for a minute and noticed our good friend, Kindra, coming out. She had just gone to the store and stocked our fridge and pantry with the necessities. It was so kind and thoughtful and meant even more that she just went and did it, not waiting to find out how she could be of help.

It was probably divine timing that she was there when we got there too. She helped unpack the car while I helped Phil into his chair and into the house. It was definitely work and when we got inside Phil we ready for a bed. He was pretty exhausted by then so while he slept I tried to unpack our hospital supplies and start organizing our life for the next phase of this journey.