The last few days have been very long and tiring but Jimmy is feeling a little better every day.
The plastic surgery team wanted Jimmy to be on complete bed rest with no movement for at least 48 hours after surgery. They wanted to make sure to give his incisions time to start healing and they especially didn't want the incision with the graft to bend at all. It is critical that the graft site heal properly since the grafted area is covering the prosthetics. This meant that Jimmy was to stay on his back at all times under told otherwise. The plastic team is also keeping an eye out for infection at the incision sites.
The vascular team wanted to continue to have the blood flow to his left foot monitored on an hourly basis to make sure the prothestics were functioning properly.
The orthopedic team is the head team for Jimmy's care and they have been waiting for pathology on the mass to check the margins. They are working in conjunction with a pain team to try and keep his pain under control.
On Wednesday afternoon, 11.12.14, the plastics team gave Jimmy the okay to be moved from ICU to a regular room since the pulse in his left leg was consistent and regular and they felt that monitoring less frequently would be okay. They were finally able to manage his pain and it didn't encompass every minute of the day for him. Since he had not been allowed to eat anything for the first 48 hours after surgery, he had now been told he could have clear liquids.
I also have to mention this. The nursing care in ICU was superb but today the nursing care stinks. Since Jimmy couldn't move or be moved until today, he had a catheter and had been having to used a bed pan. Sorry to mention but its a reality. The pad underneath of him wasn't changed between incidents and was dirty. The nurse told me that they would get to it next time. This made me angry. All of the doctors are concerned about infection and the nurse seemed very unconcerned. Well, needless to say, I brought it up with Dr. Weber, his orthopedic surgeon who did his surgery and is in charge of his care. She said she would take care of it and to please let her know if anything else seemed inadequate or detrimental to Jimmy's care.
Physical therapy came by on Thursday, 11.13.14 and wanted to get him started. Jimmy is only allowed to sit up to a 45 degree angle but he's been given the okay to start PT. The goal for today is to get out of bed and into a chair, since he is now off of complete bed rest. Well, it took two people to get him out of bed. For him to just sit up causes excruciating pain. The abdominal incision is pulling and the groin incision is compressing...neither of which are a good thing. He is not allowed to sit straight up except to get up and down for fear of bending the groin incision where the graft is located. To see Jimmy so helpless and to have two people help just sit up is hard to watch. Even though the chair is right next to the bed, they gave him a walker so he could have some stability on his own and allowing him a little bit of independence at the same time. Well, he got in the chair and they wanted him to stay there for about 30 minutes to an hour. He lasted 15 minutes before he was in too much pain to continue sitting in the chair. Then he had to get back in the bed. Thankfully, they had given him instant IV pain medication to help take the edge off before even starting the process of getting out of bed. Finally, he was back in the bed and he was exhausted.
Jimmy had also been cleared for regular food on Thursday but wasn't really that hungry. I had hoped he would have more of an appetite but with the pain and the medication, he just didn't feel like eating very much.
The doctors are now concerned about infection. They removed the bandages and his incision sites are very red and very swollen. The plastic surgeon seems to think he does have an infection even though he is on two strong antibiotics. Jimmy has also been running a fever over 100 and that is somewhat concerning. This is something that will have to monitored closely. They are also concerned about his healing properly. Since he had radiation, the healing process is much slower. Below is a picture of two of his three incisions. He does have an incision about 7 inches long on his right leg where they were going to try and harvest veins but decided to use the prosthetics instead.
Groin and abdomen incisions
Close up of the groin incision
The swelling and pain in his leg, abdomen and groin have been a constant factor and most likely will be for a while. Jimmy was on a morphine pump for pain but today, they believed that he was okay to start the transition to oral pain medication, since he obviously can't go home on the IV pump. Jimmy didn't want to get rid of it but they didn't give him a choice. The sooner he progresses in the steps it takes to go home, the better. They have also started to transition him to oral medication for his blood thinner as well. They are continuing to monitor his blood levels to make sure they have the right dose.
Thursday also brought physical therapy again. We are all concerned about the steps in our house that Jimmy will have to climb. That's the end goal for him...to be able to navigate steps. They therapist got Jimmy out of bed today and the goal was to get out of bed and just walk to the bathroom and sit in a chair for a while today. Woo hoo! He was able to do both. It wasn't easy or quick but he did it. He is very, very sore and his left leg is very weak. He was able to sit in the chair for about an hour though and that was really good. We do know that Jimmy will lose some mobility in his leg but at this point, we don't know how much.
By Friday the pathology results were in on the tumor. Dr. Weber said that the tumor was 90% necrotic thanks to radiation but the 10% still alive had been continuing to grow. The said the margins were good except for some microscopic cells that were still active. She did not expect Jimmy to have anymore radiation because the statistics did not indicate that radiation would help. She did say that Jimmy would most likely have to consider chemotherapy again sometime in the near future. Since the cancer is in his bloodstream, there is still that possibility that it will come back again. Have I mentioned how much I HATE CANCER?! Jimmy is adamant that he won't do chemo again but I want him to at least consider it if it will save his life.
The concern all day today is to change one of his two remaining IVs. It has been in for 5 days (they are only supposed to be in for 4 days) and needs to be replaced. The problem is that Jimmy literally has no veins that are viable for an IV. They are all collapsing. Two nurses came in today to try and find a new location for the IV without success. They said a doctor will most likely come by and figure out a way to get a new IV inserted. They said ultrasound may have to be used.
Friday also came with some emotional ups and downs. Jimmy has said all week that he didn't have any idea how involved this surgery would be and he had not expected all of this. Today he was really depressed. I want to help him but today I did not know how. I just told him that everyday was a day that he was taking a step toward getting better and being able to go home. He's worried about his mobility. He's worried about working. He's even a little scared but I'm sure he won't admit it. I know I am worried about all of those. Today was a bad day emotionally for me. I felt like just breaking down all day long but knew I couldn't because I didn't want Jimmy to see. I have been running nonstop since Monday morning. I'm worried about shuffling Logan to and from school, while still making sure he gets to swim practice and keeping his life somewhat normal. I'm trying to make sure I'm at the hospital early in the morning to talk to the doctors and I stay all day so I can help Jimmy and keep him company. I'm getting about 4-5 hours of sleep a night and the traveling back and forth to the hospital (about an hour each way) is definitely starting to take its toll. I am completely stressed out. I'm exhausted and I have a constant headache. I cried as soon as I left the hospital today and called my best friend. I can always depend on her to cheer me up...that's what over 30 years of friendship can do for you...so, thank you Lisa!
Well, it is now Saturday 11.15.14. Logan gets to come and spend the day with his Dad. He is looking forward to just hanging out today in the room today with us. I have missed him so much this week and I feel a little guilty for shuffling him around but I know I didn't have a choice.
Jimmy had physical therapy again today and he walked down the hall about 20 feet and back using the walker. It was slow going but he was doing it. He is having trouble moving his left leg forward because the muscle that was removed controls the ability for him to lift his leg. She physical therapist also wanted him to try a step on crutches as well. It was such a tedious and difficult process for Jimmy but he managed to do the one step. By the time he got back in bed, he was completely pooped. Each day has been a little better and everyone is happy about his progress.
The doctors have been in and out all day and of course, another nursing issue has come up. Last night when they changed Jimmy's bed, they put the linens in a chair. They actually had to change his bed twice because they washed him up in his clean sheets and got them wet, so they changed them again. There was also a couple of pillows with blood on them in the pile too. Well, it turns out that these dirty linens stayed in his room all evening and ALL NIGHT LONG. When the plastic surgeon came in this morning, he was pissed. Since Jimmy's incisions are uncovered and more susceptible to germs, not to mention the fact that he already has an infection, this was completely unacceptable care. Sometimes I wonder how some of these people have jobs. Maybe they are just desensitized to it all.
Jimmy did have quite a few family visitors today and has seemed in good spirits all day. We have had a nice day just being together. I can't wait for Jimmy to come home so he can sleep in his own bed and he can eat his own food and I won't have to worry about Logan getting to and from school and activities.
Thank goodness Jimmy is getting better every day. He is alive and the doctors did not have to take his leg and for that I am grateful. I appreciate my friends and family helping me out all week. I don't know what I would do without you. Thank you again to everyone that has sent their support and prayers to our family. We are eternally grateful.
I will continue to post and update on Jimmy's progress.
Continuing to pray for all 3 of you. Love and hugs
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