My Hero

It’s amazing that, after being a nurse for almost 5 years, I never realized until this week how annoying it is to hear, “and how would you rate your pain between 0 and 10?” I mean, what does this even mean?? My 5 might be your 10. But I guess that’s the whole point - to establish what someone’s baseline is and go from there. Whatever. Dad is too cute. The first few days here they would ask this and it was always a 4 or a 5. No matter if it was after being out of bed and moving all around, or awakened mid snore....”hmm...it’s probably a 4 or a 5.” These past few days dad’s pain has been the biggest issue for him. He was moved from the ICU to a regular floor on Monday, and they took him off of his epidural on Tuesday. Almost immediately he started feeling intense pain over his entire incision site. The past couple nights he has had a lot of pain, even where it has been a 10/10, so for him and his standard 4 or 5, I knew that he was miserable. At this point the doctors are trying to wean him off of some of his IV pain meds but increase doses and frequencies of oral meds in order to transition him to going home. They suspect as long as he tolerates these changes, he can go home tomorrow morning. We don’t know yet if this will be the plan, depending on his pain control over the next 24 hours, but we are hopeful that the doctors are so happy with his progress. 

Things have been changed a little over the week, but he has been set up to eventually get on a Mon/Wed/Fri schedule for dialysis, and will be going to Lancaster General’s outpatient center until he is recovered from his surgery and cleared to be able to look more into the home dialysis option. Until then, he will have early morning dates with the dialysis center, but at least they found him one close to home. They also set him up with a dietitian consult yesterday, and she talked to both mom and dad about foods he CAN eat, amounts of sodium, potassium, and phosphorous that he is allowed to eat, how to read food labels, and also the big “no nos” for renal diets. It is all very overwhelming as it cuts out a lot of foods that he likes, but with some good recipe books and websites, we are getting prepared to help him transition with his homecoming. It might be tough, but so far he has been so good with things, reading labels, telling the nurses he can’t eat things that come on his tray...I am very impressed. The dietitian said a big “No.” when he asked her if he could have a piece of pizza with half the sauce and half the cheese. Her response was to make an english muffin pizza with low sodium sauce and cheese. Although he didn’t say this to her, while recalling the  story to me, his response was “well, that’s real nice, but I’m not a six year old. I want my pizza.” 

Dad has been amazing. I can honestly say that he is my hero. He has gone through so much already and has a long road ahead. I stayed the night again last night so I could be here with him for dialysis this morning. Of course dialysis got bumped to 11:45, but I’m still glad I stayed the night to help him with pain issues, asking the docs questions, and just to be here to support him and love him and fix his pillows and get him more cranberry juice. He is my high maintenance little patient, but he’s allowed to be. I can’t imagine what he is going through. And in the midst of it all, he still finds time to take care of me and our family. He keeps his sense of humor, which is so important, and as we found out from the docs yesterday that they may eventually look at doing preventative treatments for any lurking cancer cells, he has kept a positive outlook that he will do whatever he can to fight it from coming back. He is handling all of the pain issues and the changes and the interruptions in his sleep from the knock knock knock lights on!, and the “squeezie” things (SCD’s) he has to wear on his legs, and the needle sticks and everything all so well.  I still remember when I got my ears pierced in third grade, and as the lady held the gun up to my ear, I watched dad quickly turn his head, wipe the sweat off his face, and walk in the other direction. Now he has to deal with all of these needle pokes to himself, but is doing amazing prepping himself and getting himself through them even if he hates them. We hope to get more details from his doctors today about his discharge plan, and hopefully his pain is well controlled the rest of the day and night so he can get home and get some good rest, good food, and good love from his family and his grandson who can’t wait to see his Poppy. We don’t want to rush things, but we are eager to get our dad out of this place! 

Mike and I plan to stay here to help out with things the next few weeks, and in the meantime I am praying and searching for a job close by. This is looking harder than we thought, and we don’t know if we will be able to stay close, but we are trying. Keri and Angus are here until next week, and I am so glad they are here to help with everything, and that little Calvin brings all of us so much joy and so many smiles. I know I have no control over what job comes to me, and even if it is not on the east coast, even if we have to travel far away again, I know things will work out. They always do, even if it’s not how you expect them to work out. That’s about it for now. Another day is wrapping up, same old view of gray skies out of the same old hospital window, same cute dad sitting next to me hoping dinner arrives soon...mmm...speaking of dinner...I’d say my hunger level on a scale from 0-10 is, ooohh...about a 4 or 5. :D

Blanket Mummy

After spending the night at the hospital on Thursday and getting only about 2 hours of sleep off and on, I got up around 6 am, got changed, and started packing up our things. Soon after I woke up, one of dad’s docs on the surgery team came in to check on him, and following that at 6:30 am the anesthesiologist arrived to discuss getting an epidural to cover his post-op pain. We were then very quickly whisked off by transport, with me literally running in tow carrying an armload of heavy bags, having very little help from the staff, and trying to comfort an emotional, adorable dad on the stretcher in front of me. We got to the holding area where dad got his epidural like a champ, and in no time we were saying goodbye at the entrance to the OR. Dad looked so brave despite all of the fear and frustration about what he was about to endure. He had told me earlier that morning that he just wished he didn’t have to do this. I can’t even begin to describe the amount of pain and anger that I feel when I think about what he is going through, and what he will have to go through to fight for his life. But I told him that morning that the way we need to look at it is that we are getting this tumor out of his body, this thing that isn’t even supposed to be in there. Getting it out is a huge relief to me, and even though he is losing his kidney, now we know that this freaking tumor can’t control him anymore. 

I watched as his cute little bald head rolled away through the doors, and I knew I needed to just trust that the guys in green would take care of things. Fighting back tears, I got into the elevator with my plethora of luggage, and knew I at least needed to hold it together until Mike arrived. Until then, I needed to sit down, get the bags off of my shoulder, and pray that someone showed up soon with a breakfast sandwich and a large strong coffee. Soon everyone started to show up, and we eventually got a call from Dr. Harpster around 11 am that they got his kidney out, and were now working on the tumor. Around 1:30 he called and the tumor was out and dad was in recovery. They had to get the tumor out of his vena cava, and in the process cut off the edges of the vena cava that were touching the tumor. His tumor had grown so much that it was pressing against his liver, and they had to scrape it off of the liver. Dr. Harpster said that his liver remained smooth afterward, so he was not concerned that it was actually attached to the liver. The tumor also grew into his diaphragm in one small area, so they had to cut a hole in the diaphragm to remove the tumor. This caused a pneumothorax, which is air in the space around the lung causing the lung to collapse. Because of this, they were keeping him intubated until they got the chest x-ray showing that his lung was re inflated, which would clear him to be extubated. All of the lymph nodes around the kidney were removed as a precaution even though they looked ok, and the surrounding area appeared cancer free as well. 

After getting the news that his surgery went as well as they could have hoped, we waited a couple more hours until we heard from the PACU that it was OK to see dad, but that he was still intubated. Mom and I came up first to see him, and when we got in the room he was starting to wake up. He was nodding yes and shaking his head no when asked questions, and squeezing our fingers. He was very shaky from the anesthesia and from the pain of having the tube in his throat, and his fingers were freezing cold and white. I asked him if he was cold and he shook his head yes, and the nurse gladly went to get him heated blankets. She was so sweet to him, and bundled him all up from head to toe. She wrapped the last toasty blanket around his head and you could see the relief on his face. He looked like the cutest little blanket mummy around. 

Finally, after more waiting, they moved dad to his bed in the SICU (surgical intensive care unit), and we were able to see him after he was extubated. It was a refreshing sight to walk in and see him sitting upright in bed, smiling at us, and completely awake. He was having some intense pain from his incision, which is probably about 8 inches long from his right lower side up to his mid abdomen, and also pain in his shoulders and back from laying so long.  He was lifting his arms up over his head, to the side, wiggling his toes and fingers, until he felt a little more stretched out. He was very curious about his incision as he studied the dressing. He kept finding little bits of tape to pull off his arms, and inspecting all of his IV’s. He kept trying to push himself up in bed without the nurses help, and wouldn’t listen to me when I told him to wait, but as soon as the nurse “yelled” at him and told him he couldn’t push himself, he said “Oh, I can’t?? OK.” He was so thirsty, but because of having the tube in his throat, he needed to wait at least an hour to drink, so the nurse was giving him mouth swabs with cold water. After the nurse slipped out of the room, he started using them as spoons to eat the ice chunks. As we were getting ready to leave, he said “I think I’ll sneak a little sip” with his eyes squinted and a little smirk on his face. It was good to see the stubborn fighter that I know. I think I know who I take after :)

Overall, the day was exhausting for everyone, but we were happy to see dad with a little more spunk. This morning I overslept my alarm and my goal of getting to the hospital by 7:30 turned into 10:30. Oops. But dad is doing OK, just in a lot of pain from his incision. He already had his first round of dialysis this morning and did great with it. Stay tuned for more updates, but for now, thank you to everyone for keeping him and us in your thoughts and prayers and for checking in throughout the day to see how we were all doing. Dad did awesome, and continues to do so. He’s our strong little blanket mummy.

Back Home

It’s hard to believe that our 5 months in San Antonio have already come to an end. I remember the first day we arrived. The sun was beating down on us as we got out of the car. I took in a deep breath and thought, “This is it. Here we go”. I remember moving all of our suitcases into our temporary home at the Extended Stay and being given a warm, hearty southern welcome by the hotel’s greeter,“Dolly” (as I liked to call her) with her bleached blonde hair, bright red lip stick, cowgirl boots and deep southern drawl. I thought, wow, we’re in Texas! Turns out she was one of a kind, but it made me smile nonetheless.

Shortly after we arrived that day, we ventured out to find the local dog park for our friend and good sport Clover. I still remember feeling like such an outsider. I still felt so displaced, a little lost, and completely terrified. Here were all of these Texas people and Texas dogs and Texas trees and they weren’t mine. I was far from my comfort zone. Mike had a similar experience at the H.E.B., our local grocery store. Culture shock hit us hard that week. It’s funny to think back to how we felt those first few weeks, and how much has changed since then. Our time in San Antonio started out with a call about my mom’s stroke, and we were faced with this huge, scary event as we were transitioning into our new life. Now as we were wrapping up time in TX, we were again being dealt another difficult, painful hand as we discovered another tumor on my dads other kidney. Again, this all started at a time of change and transition. 

I never thought that any of these things would happen as we were pulling out of Pittsburgh back in September and beginning our exciting journey. There is no doubt that this journey has been an incredible experience, and I can’t even begin to describe what amazing blessings have come to both Mike and I during our 5 months in Texas. Even with all of the bumps in our road, I know that we both have grown in different ways. For me, I was blessed with some amazing friends to not only help me with all of my transitions, but to love and support me in the joyful times as well as the challenging times. Along with this, I was able to overcome anxiety related to going to work, which had been one of my greatest burdens over the last 4 1/2 years of nursing. I have become more confident, and for some reason it suddenly hit me and actually sank in this time, that it doesn’t matter if I can’t do everything - there is no way I will ever know everything when it comes to nursing - but that I am confident in who I am, what I do know, and that I don’t have to be afraid to ask others to help me when I don’t know what the heck I’m doing. 

So all of this brings us to the present. I have had a hard time trying to describe to people what I am feeling at this moment. I guess the best word for it might be adrift. As I leave behind some great memories and incredible friends in Texas, and look forward and see a very long unknown road ahead, while at the same time still having no job (although a couple good leads), living at my parents house, and transforming into Nanny Kate ;), I feel somewhat like I am floating in this in between phase of life where I am holding onto the past and present happy moments to get me through the challenging times to come. 

As I write this, I am sitting in my dad’s hospital room at Hershey Medical Center. He was admitted today and a central line was placed. This is an IV catheter that goes in through the vein in his neck, down into his chest near his heart, and comes out into two ports to his upper right chest. This will be used following his surgery for dialysis until they can look at other options for home dialysis once he has healed and recovered from surgery. He did amazing with this fairly quick procedure, and bravely completed step #1. Several different doctors came in to talk to us about what to expect tomorrow for his surgery to remove his right kidney, and informed us that he would be the first case tomorrow (Friday) morning. Because of this, I wanted to stay the night with him at Hershey so someone would be here to send him off. I might be loaded down with my bags, his bags, the picture frame from Calvin, and a very large coffee, but at least I will be there for myself and my whole family to tell him that we love him and to hug him and to tell him that we will get through this all together. I am just so happy to finally feel like I am able to do something. Even if it isn’t much, it’s something. I am more then happy to take on the role of Nanny Kate. It has been a long day and a rough night so far, with some ups and lots of downs. But after all of the chaos of the day - the noise and the waiting and the crying and the talking - the lights are out, the TV is off, the floor is calm and quiet, there is a low soft snore in the air, and dad is finally asleep. It is kind of nice to be sitting here on my little recliner (since I opted out of the suspect looking cot that they so kindly ordered for me), and to look over and see my dad, who I love so much. Despite the fact that his situation sucks...it is bull shit...I know how strong he is, and I know that he and my mom will get through this with all of us fighting side by side. I have faith that God will carry us through this inevitably long road, and that he will help to give us peace and joy as we overcome one step after another. I am so proud of my family.

“When the future seems uncertain, like the coming of a storm. You’re loving father carries his children, when they can’t walk anymore. No matter how the wind may blow, it cannot shake the sun. Lay your sorrows on the ground, it’s time to come back home. It’s time to come back home.” - JJ Heller (see link to song below)