This has been a very difficult surgery and life has been very hectic and traumatic because of it. Also, there really hasn't been a day that I felt like writing. Normally writing is very cathartic for me but, for some reason, I could find my focus this time. I would constantly think in my head that I needed to write a blog post and what I would say but I couldn't bring myself to write anything down. You will see below that I wrote in detail about the day they let Jimmy come home from the hospital but that was as far as I got. I had no idea what we were up against this time around...being a full-time caregiver for someone who can't do anything is hard, very hard. Hence, this very long overdue post.
Here's the day Jimmy came home...
11.18.14
On Sunday, Logan and I had a relaxing day at the hospital with Jimmy. Just being together is so important to us and I'm so grateful that we got to do that on Saturday and Sunday.
Jimmy had physical therapy again today...Boris...who kept joking that he was KGB...haha. Well, Jimmy had a long walk...about 100 feet to the stairs with his walker. He was in pain and a little lightheaded and did have to stop when he got to the stairway and sit for a few minutes but it was a long walk for him. Once in the stairwell, he used crutches to go up and down two steps. He seemed a little wobbly but he did really well. He then had the long walk back to his room but he did it. By the time he got back to the room, he was wiped out. While walking, his incisions started to bleed but we were told that the more he moved around, the more this might happen...it wasn't anything to worry about.
Speaking of his incisions, the doctors have determined that Jimmy has a skin infection, cellulitis, and they will continue to watch it. Right now, they believe the antibiotics he is taking will help get rid of it.
Today they took Jimmy off of his IV pain medication and the transition to oral pain medication begins. While this is good for being able to go home, its not so good when Jimmy's pain level is very high. The other good thing is that the more they unhook you from machines, you are that much closer to going home.
The doctors are starting to talk about him going home. Hopefully, by Tuesday they will let him go. We are told that the plastics team will have the final say since they are in charge of wound care. Dr. Weber (the ortho surgeon) did say that maybe he could go home on Monday...depending on how his night went.
Well, Monday came and I got to the hospital by 6am so that I could talk to all of the doctors that morning. By 10am, the decision had been made that Jimmy could go home. There were still some logistics to work out but at some point, he would go home. We were really surprised when Dr. Weber told us because the plastics team came in first that morning and said they wanted to wait another day to give him more time on the IV antibiotics.
So happy today is the day but...we are not prepared. First, I drove the wrong vehicle...our SUV is much more comfortable that my car is but we will make it work. Hopefully, Jimmy's walker, crutches and other fun, new stuff will fit! And, second, I don't have any clothes or shoes for Jimmy to wear home. Oh well...home, here we come!
It is now 12.23.14...this is what's been going on since we got home...
When Jimmy first got home, he was in a lot of pain and everything was so swollen...leg, knee, foot, abdomen and groin. Since he couldn't get around without the walker, he decided it would be easier to sleep on the couch. In case he had to get up to go to the bathroom in the middle of the night, he could just use the urinal the hospital gave him instead of having to worry about falling on the way to the bathroom. I know that is probably too much information but its the truth. Needless to say, this was not going to be easy. I slept with my cell phone with me in case Jimmy needed me during the night...sometimes I still do.
Jimmy also came home with the three drains that were put in during surgery. I had to empty each of them twice a day and keep track of the measurements. Here's my "cocktail" of measurements...I like to think of them as Zinfandel, Merlot and Rose...hahaha. I know, I know but I have to get humor where I can these days.
The first week was extremely difficult but Jimmy was able to stop using the walker and begin to use the crutches. He said the walker was too cumbersome. One positive step. I still had to do everything for Jimmy...bathe him, wash his hair, help move him and prop his leg up, dress him and more. He couldn't yet stand alone, so he could not take a shower and I had to give him sponge baths. Trust me they were no fun. About a week later, I borrowed a shower chair from a friend and it enabled Jimmy to at least sit in the shower and enjoy the warm water. One of many baby steps he has taken along the way since surgery.
Jimmy continued to have severe pain and swelling and was taking a lot of medication for it. Between the pain meds, nerve meds, antibiotics and anxiety meds, it seemed like he was taking medication all day and night. Thank goodness we were having a nurse and physical therapist coming to house twice a week each to help monitor Jimmy's care.
I can't even tell you how hard it was for me to be a 24-hour nurse to basically an invalid. A few people said to me..."you should have been a nurse"...no way! The only reason I was doing what I was doing because Jimmy is my husband and I love him. He is my other half and taking care of him is my responsibility. Thankfully, his upper body is strong and that helped a lot. Just having to lift his legs for him, whether to re-position him on the couch or to get him dressed was hard for me. Helping him bathe and go to the bathroom was very stressful because I was so worried I was going to hurt him.
On 11.25.14, we had our first post-op appointment with the plastic surgeon so he could check on the 3 incisions...nearly 3 feet of incisions and the drains. Thankfully, one of the drains was able to be removed since it had all but stopped producing any fluid. As a side note...we put Jimmy in a wheelchair when we got there so he could get to the doctor's office much easier. It was a little weird for both of us but we learned how nice people can be...we got a lot of help with doors and the elevator. I learned that I am not very good at navigating a wheelchair...hahaha. Back to the visit...the incisions on his abdomen and groin were very swollen and bright red and the skin surrounding both were very hard to the touch. The other incision on his right leg where they were going to harvest blood vessels had just been closed back up and it is healing nicely. The abdomen incision had spots of scabbing already. All in all, the visit went went and the doctor said he seemed to be healing relatively well. The only incision of concern was the groin. The healing seemed to be going much slower but this was due to the fact that the area had been heavily radiated before surgery. The radiation retards healing significantly.
Jimmy continued to have a lot of pain and swelling, especially from his knee to his foot. Any time spent standing or walking (which was only around the house) caused this. He has been wearing a compression stocking and wrapping his leg. It works for stability but starts to aggravate after a while so he can only do that in short intervals. He's not allowed to use hot or cold for the pain/swelling because his leg tissue cannot regulate the temperature well enough to know if it is too much or not.
By this time though, Jimmy had started to be able to take showers by himself and that gave him a little more independence and me a little relief. Another baby step.
Thanksgiving came and went and we spent it quietly at home. I cooked a full turkey dinner for us and Jimmy's family came over for dessert. Jimmy was unable to get out yet and I enjoyed cooking...it was nice...just what we needed.
On December 7, Jimmy noticed that his groin incision looked like it had a hole in it. Yes, I said hole. It looked like three staples weren't really even attached to anything. Here's a picture of how it looked...its not pretty and is somewhat gross but it is a real complication that can have astronomical issues if it gets infected. Not only did this look really horrible, the wound had really started to smell. We knew that something was happening, we just didn't know exactly what yet.
This is almost the full length of the groin incision...about 8 inches.
Closeup of the part where the staples are coming detached.
Even though it was Sunday, we called the plastic surgeon right away, since he is the doctor in charge of wound care. We sent him the pictures we took and he wanted us to come in the next day, first thing in the morning so he could take a look at it. Jimmy was scheduled for 12/9 anyway for his staples to be removed and the doctor removed them while we were there on the 8th. I don't remember how many staples there were but it was somewhere in the neighborhood of 50. There were, in fact, 3 staples that were only attached to the white/yellow, fatty looking material...the doctor refers to this material as "slough". It is necrotic (dead) tissue that needs to be removed so the wound can heal. At least now we knew why the wound had started to have an odor. The doctor removed all of the staples but left some of the sutures as support for the incision and said we need to start with a wet/dry dressing that would help remove the slough easily and safely. The main concern with the wound opening is that the flap of muscle under this incision could get infected and create all sorts of problems for the prosthetic artery and vein. Thankfully, the doctor seems to think this is just a superficial opening due to all of the pressure from the swelling. The doctor also decided to remove the remaining two drains as well...more baby steps. The least amount of things to worry about the better it is for all of us, especially Jimmy.
During that week, the incision continued to open up and tunnel further out. I sent more pictures to the doctor but they insisted the opening was still superficial and to just keep doing what we are doing with the wet/dry dressing.
A couple of days later and the wound is opening more 12.9.14
You get a better idea of the width and depth in this picture...you could actually fit 2 quarters side by side 12.9.14
I know its gross and all but this is our reality...every day. I just wish I could wake up and it all be a dream and that Jimmy was healthy and strong. Jimmy has been getting depressed and feeling like he isn't getting better. It has been like taking two steps forward and one step back. Every new day seems to bring on another challenge...more swelling...freezing cold and then cold sweats...temperature...excruciating abdominal pain...and the list goes on.
At this point, it has been four weeks after surgery and Jimmy just stopped wearing scrubs all the time. I did buy him a "fancy pair" of scrubs that were dark gray...very suave they are...hahaha. That pair was for leaving the house and going to the doctor's appointments...pair them with a nice pullover, Crocs and we are all set...if you knew Jimmy, you would know that this is so far from how he would ever leave the house normally...boy, how times have changed. He has now moved up to sweatpants...another baby step!
Two days later...12.11.14...I was rushed to the emergency room for what I thought was a heart attack. The pain started gradually around noon and continually worsened until about 3:30 p.m. when I said I couldn't take it any more and we had to go to the emergency room. I actually drove to Logan's school to get him (with Jimmy in the car) but by the time I got there I couldn't drive anymore. I wanted to go home and call an ambulance but Jimmy insisted he could drive us to the hospital...so he did (at least we found out he can drive in the event of an emergency...does that count as a baby step)?! When we got there, he immediately got in a wheelchair and I went to the counter...the poor hospital staff didn't even know who needed medical attention. I have never had such pain except for labor pain and this was just as bad or worse. They ran some tests...EKG and ultrasound...and determined that I did not have a heart attack but a gall bladder attack. Thank goodness and holy moly! They told me there was nothing to do but if I continued to have these episodes I could choose to have my gall bladder taken out. So, basically, by the time we left the hospital, I was in no pain and drove all of us home.
WTF?! Can anything else go wrong? Like we really don't have enough on our plates right now. I swear I feel like sitting in a corner, rocking and beating my head against the wall sometimes...no, seriously, I have...this sucks. We are all being effected by this and it is taking its toll. Jimmy is depressed and has severe abdominal pain on top of everything else...I am sad a lot and can cry at the drop of a hat...even Logan is having his own issues with all of this, not to mention that he was sick last week too. I seriously don't know how much more I can take. I will say that now that I have actually sat down and started writing, it does make me feel better...just getting to that point wasn't easy this time around.
The last couple of days, Jimmy has begun to have severe abdominal pain and night sweats as well as being extremely cold. The nurse that comes to the house said that she suspects the abdominal pain is from the mesh that was placed there during surgery where the abdominal muscle was removed. The mesh area runs the length of the abdominal scar...about 16 inches and a width of about 4-5 inches. As for the temperature issues, this is most likely a side effect of Jimmy's body's way of trying to heal itself. I wish he would start feeling better soon...as least well enough to leave the house and stop having to live on the couch. He tried sleeping in the bed last week a couple of times and my moving around at night is painful for him so back to the sofa he went. After 18 years of him sleeping next to me, I miss him at night.
Today, 12.23.14, we went to the plastic surgeon's office again for another check-up. The ride, as always, is hard for Jimmy. All of the jostling around is painful. A doctor from Dr. Weber's team was also at this visit. When the doctor examined the incisions, he said that they all look good, even the groin incision. In the last few days, it seems to have really started to look a lot better. There is still a lot of healing left but it doesn't look nearly as bad. It is much drier looking and does not seem to be as red or swollen. Thank goodness! Jimmy also wore jeans for the first time since before the surgery...a huge baby step! Every new step makes life a little bit better.
Needless to say, this has been a very traumatic time for our family. I was not even in the mood for any Christmas decorations this year but Logan really wanted to decorate so he and I did it together. Once the tree was up and decorated, I was glad that I did but the holidays are just so different this year. I will say in closing that I am thankful that my husband is still with me and that he is healing and getting stronger each and every day. I can't imagine going through this life without him.
Also, I would like to wish you and your family a very Merry Christmas or whatever holiday you are celebrating this time of year. I hope you find peace, love and happiness in your life and that you allow yourself to treasure each and every moment you spend with your family and friends.
Thank you for letting me share my family with you and we truly appreciate all of your support.
Much love...Susan
So sorry your family has to keep going through this ordeal. And no wonder your husband is depressed.
ReplyDeleteHere's hoping 2015 shows stabilizing of his cancer and all the surgeries.
You all seriously need a break!
Thanks Anne for our kind words!
Delete