Little Steps

Every chance I got, I went down to the nursing home in the city and spent time with Daddy. I loved being there for his physical therapy and watching his progress. His room is about 40 feet from the physical therapy room, when he can manage he walks himself or wheels himself down to the room. Otherwise, a therapist aide comes to help him. This room is set up with normal gym machines, and adaptive ones. The sitting down elliptical was Daddy's favorite. But our main concern was his balance, and if he could do the stairs. With every step, I held my breath, and every time he looked back at me I made sure my face looked so proud and happy for him, to encourage him and keep him positive. Keeping him positive is so hard, but so important.

When he makes it back to his bed, he is exhausted. His breathing is heavier now than it was after he'd work out when healthy. The nursing home staff doesn't know what rinsing is, so when he gets bathed, he gets soaped up and patted dry, never rinsed. His skin is flakey and itchy and miserable. After physical therapy he is sweaty on top of that. I just talk to him, distract him if I can. I want to take all of his hardships and put them on myself. I want my Daddy to be comfortable.


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Havent written in a while

So after dealing with the screaming lady on the second floor, we actually got Daddy's orthopedic surgeon to call the CEO of the nursing home chain and demand that Daddy be moved as far away from the screaming woman as possible because the environment she created was not conducive to his healing process... He finally got moved to the first floor! The rehab floor! Where he belonged ALL ALONG. His new roomie was a deaf gentleman who I assume has type one diabetes circulation complications because both legs were amputated, one below the knee and one above. The man was very friendly and watched his TV with subtitles.

The idiot doctors and nurses (nursing home NEVER had an ASL interpreter for him, EVER) would just yell louder at him, he is DEAF he cannot hear you!!! ...and since he had to play charades to be able to communicate his needs, I bet his needs were never fully met.

I felt bad, but I never met any family or visitors to be able to discuss my concerns with them. Momma and I would bring him sugar free treats and baked goods, they seemed to brighten his day enough.

At least Daddy was on the rehab floor and could wheel himself to the physical therapy room by himself, this way his PT was never forgotten about and he received therapy every day. He also finally had the window side bed. He could see the Natty-Boh man at the brewery light up every night and could feel like he wasn't confined... As much.



I just wanted him home...




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Going back

So, Daddy had to go back to that awful nursing home. Again, he was not placed on the rehabilitation floor. This time he got put on the second floor, across the hall from a woman who screamed at all times of the day and night. Daddy said that his roommate had to request sleeping pills, plural, to sleep through her screams and tantrums. Like sleepless nights are exactly what Daddy needed...





Momma started yelling at any ear she could get ahold of, to try to get Daddy away from this awful woman. Of course, the staff at the nursing home acted like they had no fault in the matter. If you don't want to take responsibility for the elderly and sick, then don't work at a nursing home!! This second floor was full of resident patients, who are destined to die there. My Daddy might have cancer, but I refuse to let him recover in a place like this... Refuse.



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PT was hard

Physical therapy for Daddy's new titanium femurs was rough, he said it felt like he had to lift 30lbs of extra weight just to move his legs. It didn't help that he still hadn't gotten anymore feeling back in his legs due his spinal tumors. Those things just wouldn't give. PT's and PTA's would come in to the room fairly often, doing bed exercises and getting Daddy up on a walker. He couldn't do much on the walker, so I knew we were going to have to go back to that awful nursing home. Our county refused to designate their nursing homes as "acute care", so we were stuck with this one because insurance would cover it.... Made me sick to my stomach thinking of sending him back there. Daddy seemed to be in good spirits though, a lot better than prior to the surgery.





Prior to this surgery, I think Daddy wanted to really give up but Momma and I convinced him to push through and receive this surgery. We just hoped it would be his last. Three surgeries in three months, I don't know how his body was able to cope and be so resilient through it all. Now we had to start planning for the nursing home again, and somehow finding a way that I could be with him for the back and forth to radiation again. This wasn't going to be as easy as last time, because last time I was on winter break. Daddy was receiving his chemo infusion in his hospital bed as I was trying to figure out everything... Did I eat that day? I remember thinking that to myself... Priorities I guess.

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Toll Money

The only hardship I really found I had to deal with was toll money and parking garage money. The gas money didn't bother me, it was my choice to live a half hour from my parents and an hour away from the city. I just hated the fact that money had me dictating when I could see Daddy. If I didnt have enough money that day, I couldn't go to the city to see him. Sometimes I'd ask for money from my Momma, but I hate doing that. So when I was spending time with Daddy, I made it count. I started to stay up late and do my homework instead of doing it while I was visiting with him so that I could just focus on him. I also started packing my lunches and snacks so that I wouldn't have to waste time in line at the cafeteria. I prayed every night for more time with my Daddy.

Still praying for that, every night.




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While he Sleeps

Every day continued on, work school work drive down to cook for Momma and my brother, or work go see Daddy work maybe do some homework, every day... On and on. I didn't feel much, somehow my body and mind were able to just do what I needed them to do and that was it... Until, Daddy fell asleep.

Every time I'd go to see Daddy, PT and nurses would be in and out keeping him awake. I'd try my hardest to distract him and keep him entertained, I even downloaded some of his favorite board games as apps onto my phone so we could play. Then came serene moments, when Daddy was able to fall asleep. He made funny facial expressions, and would moan sometimes, but at least he was asleep. Cancer can't get him in his dreams. Those moments were when my emotions would overcome me... I'd cry silently so I wouldn't wake him up, I'd think about how to quickly fix my face so when he woke up he couldn't tell I was crying, and then it'd get to a point where there were no more tears, just sadness, just a feeling in my chest that wouldn't go away... Ever


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The Next Day

The next day, I had only gotten about two hours of sleep... Momma was going to try to get through a normal work day, so I took off of work and went to spend the day with Daddy. I was seriously surprised to find that he was still stuck in the recovery unit because the orthopedic floor still did not have an open bed for him. When I told Momma, she was furious... Recovery unit nurses are required to wake you up regularly and test regularly, which is nice... But not when you want to sleep and NEED to rest, and being in recovery means that Daddy had not been seen by physical therapy yet, when the surgeon wanted PT see him right away to get him up and moving on his new titanium femurs. Momma called the surgeon and not a half hour later he found me in the surgical waiting room as I waited for the next visiting hour to come. He was wearing one of his ridiculous bow ties, so I really couldn't take him seriously, but he told me he had made room for Daddy on the ortho floor and that he wanted me to come with him to walk along as transport team took Daddy upstairs to his new room. Daddy was so happy to hear the news, but I could tell he was not excited about PT, he was still in a good deal of pain and found it very difficult to get comfortable and fall asleep.





We got into the room, the surgeon and PT brought in this ridiculous contraption that helped Daddy stand up. They just had him stand and take a few steps and he was exhausted, I could see his leg muscles struggling. I felt tears welling up, but I was determined not to let Daddy see them, luckily I saw the lunch tray cart coming... So I told Daddy I was going to get my own lunch so that we could eat together. As I walked out of the ortho unit, I knew where the nearest bathroom was (to be TOO familiar with a hospital) and as I shut the door behind me, I fell to the ground and tears poured down my cheeks... I couldn't even feel that they were there I was so upset and filled with adrenaline, I didn't know I was crying until the tears started to drip off my jaw bone into my lap. Once I realized I was a mess, I stood up, took a deep breath, wiped me face, reapplying foundation powder, and went to the cafeteria to pick out the food I was going to force myself to eat... Hunger didn't exist a lot when in the hospital, I'm honestly surprised I never got sick from forcing food on myself... I just knew I'd need my strength so I needed to eat.





I got back to Daddy's room and he was panting with exhaustion, and has his lunch tray untouched in front of him. I didn't make him ask, I just started to cut up his food and started to feed him. Once he told me he was full, he took my hand, kissed it, and fell asleep. I fed myself with one hand because I couldn't bare to let go of his hand while he was sleeping... He slept for almost four straight hours... When he woke up, he kissed my hand again and turned on the TV. I will never forget these moments, ever.


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Waiting

We waited and we waited, and finally one of the surgeon's residents came out and told us that they were half way done with the surgery, so they had to flip him to the other side and complete his second leg. This was a good thing because there was a chance that if the first leg went wrong, then the second leg would have to be a second surgery all together. So it was good news... But for some reason I wasn't happy to hear it... The only good news I wanted to hear was "cancer free", but I knew I'd probably never hear a doctor say those words about Daddy... So I forced a smile and my Uncle Kevin made me take a walk and get some coffee with him. He was always good at taking my mind off of things.

A few hours later, the surgeon came out and told us that everything went well, and that Daddy barely needed any blood which was a HUGE deal because the last surgery, he received 14 units of blood... Almost the same amount of blood that is in his entire body. He told us that Daddy would be in recovery for at least the night because the orthopedic floor didn't have any available beds. Every two hours they'd let you visit in the recovery room, so Momma and I went back... He was AWAKE, this was the first surgery he'd had that he was awake in the recovery room when we went to see him. But, he was in some serious pain and discomfort, doctors always have a hard time giving him the correct amount of pain meds because he is like treating two and half normal sized people... It hurt me to my core to see the pain in his face, then he said to me that he didn't think the pain was worth it.. That even with titanium rods, he'd never get to walk normally again because of his spinal tumors... He started to cry, I saw Momma start to cry, and I just held my breath so that I wouldn't cry too... Took one of each of their hands, and sat there until close to the end of our visit time. The doctor came around and gave Daddy a pain medicine that would knock him out until morning, so we said our good byes and Uncle Kevin took Momma and I to dinner for Burgers and then we went home to watch out Giants win another playoff game...




I slept in Daddy's hospital bed in the living room, keeping it warm for him. In the middle of the night, I heard Uncle Kevin's voice, "hey kiddo, I got called in I have to go, I washed some laundry for your Mom you need to fold it, stay strong angel." I couldn't fall back asleep, so I went and got in bed with Momma... She reached out and held me and I fell right back asleep.

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