I have been a nurse for just a little over 7 years now and I easily had my most eye opening experience just a few months ago. Most of you know me and have been following about my father and his recent medical problems. This gave me my first experience on the other side of medicine as the patient's family member. I will forever be changed as a person, nurse, and most importantly as an advocate for patients as a result of this experience. I thought I knew how exhausting mentally and physically it was to care for a critically ill family member, but in reality I had no idea at all. For about 15 days in December I felt like I lived in a hospital. Before I begin the recount of the events I just want to tell you all that we are so glad that this had a happy ending, because as you read just remember that there were a few times when we were not sure that there would be.
Here is the my version of what happened to dad during his illness. McKinley and dad had just returned from a trip to New Orleans on Friday December 9th. McKinley had interviewed for a spot in the Internal Medicine residency program and dad went along on the journey. That Saturday he rested and just did some stuff around the house. Sunday he did his normal routine and played piano at 2 different churches in the morning and then went to get some Christmas shopping done before coming back to play piano that night at church. The next morning is when everything started. Dad woke up in the morning and had some severe back pain. He cancelled all of his plans for the day and mom took him over to the chiropractor to see if it was just something that he could "straighten" back out. Dad said it helped a little, but not as much as he had hoped. He returned again the next day where the chiropractor tried to do some more maneuvers, but was unsuccessful. The next day when dad came in for a third treatment he told dad that he might need to see his regular doctor, because it was more than he could fix. So on Wednesday dad went to see his doctor. They drew some labs, thankfully, and then gave him a pain and steroid shot in his back and sent him home. Before they even got out of town they received a call that his kidney levels were elevated and he should go to the hospital where he would be directly admitted to a room. When mom first told us that she was taking dad to the hospital we thought it was just a quick trip to the hospital that would be sorted out and dad would be sent back home in a day or two. Boy were we all wrong!
Dad was started on some IV fluids to help with the kidney function. They also did a CT scan to check for any possible kidney stones that could have been causing the pain and on this scan they noticed an abnormal pocket of infection, or abscess, in a muscle in his back. We then thought that this was the cause of his back pain, so things were starting to fall into place with what all was happening. However, that night dad spiked a fever and just to be careful they drew some blood cultures. About 17 hours later we would find out that these cultures grew back a bacteria, MSSA. On top of everything going on, dad was having periods of confusion off and on throughout the day. So now this meant that he had been in the hospital for just about 36 hours and the list of problems were only growing. He had the acute kidney injury, a back muscle abscess, and now the blood infection. Mom was still the only one with him in the hospital and she seemed to be a bit overwhelmed, so we decided that it was time for McKinley and me to head in to see if we could help out.
McKinley, myself and my kids arrived at the hospital on Friday afternoon and it sure did give dad a boost in his spirits. That night we sent mom to rest and McKinley and I stayed with dad for the night. My cousin who lived close to the hospital agreed to watch my kids for the night. Dad was very restless during the night and I am not so sure that he slept more than about an hour total. He kept wanting to get up and use the bathroom, but with each time it seemed like he was getting weaker and weaker. Dad was also having some trouble with his breathing and he was breathing faster than normal at a rate of about 40-50 times a minute (normal is 12-20). The next day when the doctor came in he decided that he had a little fluid on his lungs and he was concerned with his breathing so he was going to move him down to the ICU. Things were about the same, but we were glad that he was getting the extra monitoring. Then the ICU doctor became concerned with the increased breathing because nothing he had been diagnosed with would have been causing this increased and labored breathing. The doctor thought that it was very possible that dad had a pulmonary emboli, or a blood clot in his lungs. The problem then was that the test to diagnose this required a contrast dye that is harmful to your kidneys and they didn't want dad to have that done. So, the next logical thing to do was to treat for the blood clot with blood thinners until he was able to have the test. So, dad was started on a heparin drip. Things were going well and we thought everything was moving in the right direction. Andrea had made it in from New York earlier than she had planned for the holidays despite the bad weather conditions. So, the Heflins were finally all together.
The next night is when things really took a turn for the worst. Dad's kidney function had finally improved enough that they felt comfortable to do the test to check for the blood clots. The doctor came and told us that his preliminary view of the scan showed a small blood clot in his lung. When dad came back from this procedure he seemed really tired and so we just let him rest. The problem was that over the next few hours he became more and more lethargic, or extremely tired, and was not as responsive when he would wake up. This was very concerning for us and we mentioned to the nurse who then started to get the doctor in to check on him. As soon as the doctor arrived and saw what dad looked like he immediately told everyone that he needed to be intubated. He mentioned to us that he wanted to also put in a central line because he thought that dad would probably have to be put on medication to help support him while the bacteria in his blood was being treated. Dad then had some bowel movements that were indicative of internal bleeding. So, the heparin drip was then stopped and they placed a tube down his nose to clean out any blood in his stomach, which ended up being a lot. When they rechecked his labs they discovered that his blood levels had dropped significantly. This required him to get two blood transfusions. They also quickly took him to get an abdominal scan to see if they could see any internal bleeding. Thankfully there was no active bleeding, but they wanted to start him on an IV medication to help prevent any future bleeding (Protonix drip). We were also informed that after closer examination by the radiologist that there was no blood clot in his lung.
After he was intubated dad was placed on IV medication for pain and sedation so that his body could rest and the medications could fight the infection. On the second day of being intubated his blood pressure began to drop and giving him additional fluid was not working. So the doctor decided to place him on IV medication, Vasopressin, to help support his blood pressure. However, it seemed like the entire day they were having to increase the dosage because his blood pressure still kept dropping. It continued to drop so much that they had to start him on a second IV medication, Norepinephrine, to help stabilize his blood pressure. This was all probably due to the infection in his blood, but it was hard to see him needing more and more support to stay alive. His blood sugars at this point were running in the high 200's to low 300's so they decided to also place him on an IV insulin drip to better control his blood sugars. This is pretty common in an ICU because the body heals best when the blood glucose is within normal limits.
This is when we got together as a family and started talking about if this is really where we thought we should be for his treatment. It just seemed like every few minutes something new was going wrong and we didn't know if this was the appropriate hospital for him to be in. We spoke with his primary doctor, the ICU doctor, his nurse, friends, and some other staff that we knew at the hospital. They all said relatively the same thing to us. That our dad was very fragile right now and that they didn't think that transporting him to another hospital at this time would be beneficial because the travel to the other facility would be extremely hard on his body. They then said that if that is what we truly wanted then they would make every effort possible to make it happen. Mom and all of us kids were at a loss. We didn't know what the right decision was for our father. What I was thinking was that we were at a small town hospital and that maybe there was something that was being missed because we weren't at a large city university hospital where they send the sickest patients. At the moment, I wanted him in Lexington at the University of Kentucky or possibly in Louisville. However, I didn't want to make that decision and then when the outcome turned out bad everyone blame it on me, including myself.
That night before the night shift crew arrived our day shift nurse, Aimee, said she wanted to pray with all of us. So, we all gathered around dad and she led us in a prayer and the words she said calmed all of mine and my family's fears. In that moment I had hope again that this was the place that we were meant to be. Or maybe it was God's way of speaking through Aimee to let us know that he was in control. We had so much family and friends close by to support us and to come by and chat on those long hospital days. We just needed for something to start going in the right direction with dad.
Dad had a really good night the second night he was intubated and the did some trials on the ventilator where he was breathing on his own, which was a really good sign. So the next morning we were thinking they might decide to get the breathing tube out. However, the next morning we were all waiting and ready for the doctor to come by and tell us the plan for the day. The only problem is that the doctor didn't come in until 3 pm. Let me tell you that I was pretty furious for most of the day because I wanted answers. I wanted a plan because that is what I am used to having. My brother calmed me down throughout the day by saying that maybe he wasn't coming by because dad was the most stable patient that he had on the unit. Well, he could have just poked his head in and said something to us. Anyway, they decided to take dad off the sedation medications so that he could wake up and become more alert. When the ICU doctor finally came by he said that he thought it might be a few more days on the ventilator before he was ready to have the breathing tube removed. We were praying for less because it was so difficult seeing dad in that state. His blood pressure did start to become a little more stable and they were able to slowly wean him off the IV blood pressure medications. So, now we just had to get that breathing tube out.
Dad had a total of 3 days on the ventilator before they finally thought he was ready to have the tube removed. Some of the delay was that dad wasn't fully waking up enough with the sedation medication turned off. This made them think that he still might not be awake enough to follow commands. They decided to take the breathing tube out when he finally answered a few yes or no questions appropriately. We all stepped out into the waiting room and impatiently waited for them to come get us so that we could see and hear him talk again!
He didn't initially talk to us after we all came back in the room, but when he did look like he was about to speak we all gathered around close to listen to what he was gonna say. He said "I would love to have a bottle of water." Only dad! What made it even funnier to all of us is that he hates water and would never choose it over anything. His mouth was just so dry that water was what he really wanted.
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| These pictures put the whole thing into a little bit of perspective. The 3 photos were taken in about an 11 day span. The far left is when he was in New Orleans at a Pelicans basketball game. Eight days later he was on a ventilator and finally in the last picture was the day he got his breathing tube removed. Pretty crazy if you ask me. Also the only reason why we still have him is because God knew it wasn't his time. For that I will always be thankful. |
Now for dad the hard part was only beginning. Rehabbing is very difficult and is sometimes a very slow process. For the past week or so he had barely gotten out of the bed and the doctor kept telling us that for everyday you lay in bed it takes about 5 days for each one of those to get your strength back. As we soon found out too is that dad had no recollection of anything that had been going on ever since he had been admitted to the hospital. He didn't understand how he got into the position that he was in. Slowly we started telling him more and more about what had happened to him.
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| Not exactly how we anticipated spending our Christmas, but I will say that there has never been a Christmas that I have been more thankful. Life is so precious and should be spent with the ones you love and this is my most important people in this world. Dad still doesn't really remember celebrating Christmas in the hospital, but we did. We opened gifts right there with him in the ICU. |
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| The kids opening Christmas gifts with grandpa. |
Dad was still really weak and tired for most of the days following getting the breathing tube removed, but everyday we could tell that he was getting stronger and stronger. He was still having trouble with his blood levels being on the lower side. In fact, he ended up getting another 5 units of blood during his time in the ICU, for an overall total of 7 units during the hospitalization.
Our next biggest obstacle that we were facing was dad's insurance. They denied him inpatient rehab and we spent about 4 or 5 extra days in the ICU because the hospital said that if we moved out to a regular floor then the insurance would be even less willing to accept him into a rehab facility. They finally did move him to an acute care floor because they needed the ICU room. Thankfully they finally discovered, after days of painfully waiting, (about 8 to be exact) that the initial diagnosis on dad's insurance form said that he was in the hospital only for acute renal failure and not that he was septic. When they changed that he was then ready for a spot in inpatient rehab there at the hospital.
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| It was so crazy to see how much he had lost in just a little over 10 days. It took a few days before they even felt comfortable even helping him to stand up. When they finally did it took a walker and 3 people's help. |
In the 8 days that we waited for rehab we had tons of staff that came to dad's room to help with physical therapy, occupational therapy, and speech therapy. Dad initially could barely move at all and had trouble with the easiest of tasks. He had some issues with memory and some comprehension, which is not like him at all! It was a little scary for all of us because we were unsure at the time if this was going to be his new normal or if he would get back to his old self.
Dad also had lots of trouble with swallowing after getting the breathing tube removed. We initially thought it was due to the tubes that could have cause some irritation. He was only allowed soft foods and thickened liquids which of course he wasn't a fan of. For some reason he had one single meal on his mind everyday. He loves Great Harvest Bread Co. and would eat there every Monday before going to play Bridge with his friends. As soon as he got the go ahead that he could eat solid foods I ran out to get it for him. He was super happy to get it, but unfortunately he said it didn't taste right. This was actually a common theme for about a month. No foods tasted like they were supposed to for him. This might have been why he ended up weighing about 20 pounds lighter when he left the hospital than when he arrived.
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| The most anticipated sandwich and soup ever! Chicken salad on orange-cranberry bread with a cup of tomato bisque. |
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| We knew that dad started feeling a lot better when he was ready to start playing games. Here I captured us in the middle of a game of rook with a really good hand I might add. I am just glad that we ended up partners because I would have felt slightly bad about beating my old man when he was sick. |
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| Here was the last picture that I took with dad in the year 2016. I had been off from work for 2 weeks and he was finally at a place where I felt comfortable heading back home to Lexington to return to work. I was hopeful for a better 2017! |
While I was in Lexington he got moved to a regular room while he was waiting for placement in the rehab unit. He was continuing to get antibiotics every 12 hours for the infection that started this whole ordeal. Dad was going to have to stay on these medications for at least 6 weeks. I think it was on Christmas day that they actually placed a PICC line that he would be able to go home with.
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| The whole crew was back together and dad looked so much more like himself in early 2017. Prior to getting sick all of us kids had made plans for after Christmas and into the beginning of the new year. Thankfully dad was doing so much better close to the new year that we were all able to attend our previously scheduled plans. Andrea went back home to New York to do some stuff, McKinley went on a trip to Mexico, and I went with Jennifer to run in our first ever marathon in Florida. Here is the picture when we all returned back home to see dad in his new rehab unit. |
After 2 weeks in rehab he was finally released to go home and continue with outpatient rehab as well as daily visits to an infusion clinic for his dose of antibiotics. I am so thankful that Andrea was in between jobs at the time so she was able to stay at home for close to a month to help mom out with dad. Even though he had been cleared to go home he was still really weak and had difficulty doing most tasks on his own. I came back a couple of times in between my weekend shifts to help out as well as do some handy work around the house.
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| Dad getting in the car to head home. He was finally discharged from the hospital on January 16, 2017. This meant that he was hospitalized for a total of 32 days and I know that he was ready to get out of there. He was pretty worried about how things were going to go once he got home because he wouldn't have all of the same help that he had in the hospital. He was upset that he had to go home with a cane to use as an assistive device, but he just wasn't strong or sturdy enough to go without it. |
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| Dad at the infusion clinic. He had to go here every morning for a 30 minute infusion of antibiotics through his PICC line. Dad was still not able to drive so someone had to take him every morning and afterwards we usually did a few errands in town too. Two days a week he would go to therapy after the infusion too. |
Everything was going in the right direction and dad was doing great. He was sometimes upset because things weren't progressing as fast as he would have liked them to. He would have to be reminded that he didn't get in this shape overnight so it was going to take a while for him to get back to normal. Then one day dad finally mentioned that he was having some trouble seeing so we took him to the optometrist. Turns out that dad's right retina had become detached at some point and that was the reason for his vision loss in that eye. Two days later he had surgery to repair this detached retina and the procedure was called a scelera buckling.
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| Dad may not have been able to see good, but he never lost his sense of humor. This was a picture that mom sent us after he had the surgery. |
The doctor told him that it could take up to a year for his vision to come back and that it might not. Not exactly what dad or the rest of us wanted to hear, but we just kept praying for the best. His follow up visit showed that he still didn't have great vision back in that eye but that he now also needed to have a cataract removed. Apparently, the previous surgery caused the cataract to become worse. About 3 months later he had the cataract removed and we are so excited that he now has vision that is at about 20/40 without any corrective lenses!
It has now been a little over 5 months since all this started and dad is slowly getting back to his normal routine. He has gone back to working at the middle school and has returned to playing piano at church too. Dad has yet to start driving again because his eyesight has been impaired, so mom has been his chauffeur ever since returning home. Dad still has to take oral antibiotics to keep the infection from coming back. His infectious disease doctor has told him that when he stops these antibiotics in June it will be the true tell if the infection is really gone from his body. Also, for the last 4 months dad has also been on the blood thinner Xarelto because on an ultrasound they did find that he had a small blood clot behind his left knee.
I would like to thank the staff at Owensboro Health for all that they did for us during our 38 days there. I would like to thank all of the nursing staff, doctors, physician assistants, respiratory therapists, IV team members, speech therapists, physical therapists, pharmacists, nursing care techs, other administrative personnel, and even the custodians. You all play a valuable part in helping get my father back to where he is today. For that we are all very grateful and thankful that you do what you do! There were a few people that I would like to thank personally but I have no idea if they will ever to see this, but I know how grateful I am that they were helping take care of dad at the times when we needed them the most. A couple of nurses who stand out are Aimee and Evan. I talked about Aimee earlier, but Evan was like our full time night shift ICU nurse and caught a few things that others had missed that proved to be very important. One respiratory therapist, John Michael was very helpful along the way and he was the one that placed dad's art line, which is essentially an IV placed in an artery that allows you to continuously monitor blood pressure. Mike with the IV team placed a couple of IV's for dad and even placed his PICC line on Christmas day. Speech therapist Carla who was patient with dad and was the one that gave the go ahead on the Great Harvest sandwich. Dr. Gipe and his group of doctors who stayed with dad through the whole process and are still keeping a watchful eye over him now that he is out of the hospital. Dr. Wilson and the entire infectious disease team who found the
bacteria and have done a great job getting dad the appropriate medications needed to kill it. Dana, who just so happens to be Jennifer's cousin, who guided us and helped us finally get the insurance to approve dad's rehab. Mrs. Enoch, who was my football coach's wife, who was a familiar face that stopped in to check on us and even told us about the sleep rooms which proved to be very beneficial. There are so many more, but for some reason these are the ones that stick out the most and that I remembered their names.
I cannot even begin to thank everyone that played a part in helping us through this difficult time. For all the prayers, thoughts, texts, cards, calls, visits, and just the outpouring of love that was shown for my dad and our family. For the people that brought us food to the people that let us stay in their homes. You all kept us going when we were completely lost as to where our next meal or where we were going to sleep for the night. In our time of need you all stepped up to help in any way that was needed. So thank you from all of us!
I would like to thank my wife for sacrificing her time and energy during this difficult time as well. I dropped everything to be at my father's side for close to 3 weeks. She became a single parent and at times was 3 hours away watching both kids while still trying to work her shifts. Thankful for her mom for watching the kids while she was at work. Jennifer would usually pick them up on her way home each morning and keep them all day with little to no sleep. Jennifer was my rock in a time when I needed her most.
The last group of people that I want to thank are my mom, sister, and brother. This was a very difficult time for our family and I feel like this brought us even closer together. There were nights when all 4 of us slept in the room. We laughed, cried, prayed, comforted each other, and we waited together for the entire time he was in the ICU. My mom and sister who do not work in the medical field were lost at times with what all was going on. So, early in the process we made the decision that at all times myself or McKinley had to be present at the bedside so that we could help make decisions and also act as a medical interpreter for mom and Andrea. This ended up being McKinley's first real patient because he was practically done with medical school at the time that dad got sick. McKinley acted as my sounding board and my own personal medical student to see if things were being done properly because I don't work with adults. I hope that all of McKinley's future patients have a positive outcome like his first did. Andrea was our support role in the hospital because in all honesty she was completely out of her element. She has no medical knowledge so we were always having to fill her in on what was going on. Andrea really came through once dad returned home. Andrea stayed for about a month to help take care of dad and to help mom out with anything around the house. I am not sure that mom would have been able to do this by herself because dad was still not in very good physical condition when he first got home. This was a huge help and I cannot thank her enough because I know that it had to be difficult for her to be away from her husband for a month. Lastly, I am thankful that mom played the role of guest relations at the hospital. Dad had lots of visitors while at the hospital and she was the one that was in charge of telling the story of events that had happened. This was probably a great distraction technique and there were quite a few people that us kids didn't even know. I can't imagine how difficult it was for her to see her husband of 34 years in the condition that he was in.
This was one of the most difficult times that I have had to experience in my short 31 years of life. To see my father, the man that I love lay in a hospital bed motionless for multiple days was heartbreaking. I know that so many people have to do this on a daily basis, because I am the nurse that has taken care of them, and my heart truly goes out to them. We were lucky in that we had a positive ending and not everyone gets that. I thankfully get to spend more time with my dad and for each day I am grateful, because as we all know tomorrow is not guaranteed. I thank God that this wasn't dad's ending because I think he still has more works to do here on this Earth. If I learned nothing else from this experience it was how much that dad meant to so many people. The number of people that came to see us and contact us was incredible, but they were all people that dad had an influence on at some point in their lives. It was truly remarkable! Again I thank you all! I love you dad! Thanks for reading and God bless!
