In Honor of My Husband, Ron

Sunday, February 22, 2009

Ron is Home!

Sunday, February 22, 2009: All apologies to those who follow this blog. I promised to keep you informed of Ron's progress in the hospital and I didn't. I decided to not bring my laptop because I would have had to carry it all over the hospital with me. I'm so sorry. I tried to keep in touch with many by phone. Anyway, Ron came home this past Wednesday, February 18, after 16 days in the hospital. He had to spend more time than we thought because he had a setback that I will explain. I will try to reconstruct our time.
Monday, February 2: We got to the hospital at about 5 a.m., a little early. The nerves were working big time! I was just sure that Ron would be changed forever after this surgery, and I was so worried about that. While we were waiting in the pre-surgical area, our daughter came back to see us and along with her was my sister! She surprised me by making the drive (again) all the way from Missouri just to be with us. I was so glad she was there. She will never know how much she means to me and Ron. They wheeled Ron away at about 7 a.m. and we didn't see him again for 17 hours, at midnight. We all went to the surgical waiting area and tried to settle in. I had again brought things to read, but my mind just would not let me concentrate on anything. It really helped to have our daughter and son-in-law there along with my sister. They were there the entire time with me. I also got a surprise that morning. A woman came up to me and asked if I was Lori. I said yes, and she introduced herself as someone I knew only from the OCF website. She lives in Madison and her husband had been treated there by the same Doctor. She had made a special trip just to see me and wish us luck. I was so surprised and happy to meet her. Unfortunately, she lost her husband last October, but she told me that UW-Madison had allowed him to live a longer and better quality life. This is just an example of the wonderful people on the OCF website. They have helped me so much!
We got phone updates throughout the day, about every hour and a half. At 3 p.m. we were told that the micro vascular work was starting and that it would be about 2 or 3 more hours. At 5 p.m., they said they were about one to one and a half hours away. At 6 p.m. they were finishing up. Ron's doctor came out at about 6:30 p.m. to tell us how it went. Ron did not lose his tongue! I was so thrilled at that news that the rest of it really didn't sink in right away. Ron still has about 1/3 of his original tongue. The tumor was large, with the right mandible fully necrotic and cancerous. There were suspicious looking nodes both in the left neck and under his chin, which were removed. Everything on the right neck looked good. The right mandible was removed and replaced with a metal plate. The tissue was replaced with scapular muscle from his back. The flap looked great but was not initially perfusing very well, so that will be watched closely. Ron was sent to the recovery room at 7:30 p.m. We were told to go to the ICU family room at this point. For the next four and a half hours, we were told nothing. I was really losing it at this point and was very angry that we never had one update from the recovery room at all. My sister said that I shouldn't be getting mad, and I snapped at her and left the room. I felt horrible right after that. I was so worried about Ron at this point and not hearing anything was making it so much worse. I cried in the hallway for a while and then went back in and apologized to everyone for losing it. I love my sister so much, she is the last person I wanted to snap at. It was a very long day. We finally were allowed to go into the ICU to see Ron at midnight. He was totally out of it, and I'm not sure he even knew we were there, but it was just so good to see him again. He looked the same as he looked after the surgery in September since the same incision was used. The only difference this time was that the neck incision extended to the left side as well as the right. He had three drains, one scapular, one in his left neck and one in his right neck. He also had a trach, an arterial line, several IV's, a catheter and a nasal feeding tube. Once we got to see him and know that he was alright we left the hospital to get some sleep. My sister had rented an apartment in the same building where our daughter and son-in-law live, and I would stay with her while she was here. What a wonderful thing to fall into bed that night.
The next few days passed quickly. My sister had to go back home, but I was so happy to have had her here! Every day Ron had lines removed, which is always a good thing. There were areas of concern with the flap. Some areas were perfusing better than others, so the doctor was keeping a very close eye on it. Ron was on IV steroids to help with the facial swelling, so it looked much better than in September. February 5 Ron was moved from the ICU to the regular ENT Surgical floor. On Friday, February 6, the PEG tube was put in his stomach. When he got back to the room, he was beyond pain. It turns out, they could not anesthetize him because it would increase secretions, so he had only an IV pain medication. He felt every bit of the PEG tube insertion. He told the nurse that his pain was a 6. He has never used a number that high before, so it was a bad night attempting to get on top of the pain, and keep it under control. Thankfully, it did get under control and the following day the nasal tube was removed.
Sunday, February 8: The doctor came in and placed 4-5 stitches inside Ron's mouth. He apparently had kind of a tunnel that was gathering drainage. Ron had been having a lot of bloody sputum building up in his mouth and he would have to frequently attempt to spit it out. It's very hard to get rid of sputum when you can't control your tongue! There is an infection in Ron's own tissue now, so he was changed from one antibiotic to two very powerful ones. The doctor said that he may have to go back in to remove the infected tissue if the antibiotics do not get it under control quickly. We are all praying that he won't have to go back in, but the doctor has an OR scheduled for Wednesday, just in case. The next two days it appeared that the new antibiotics were really working, but on Wednesday morning, the doctor said that he would have to go in again and remove infected tissue. He briefly mentioned the possibility of having to remove the metal jaw, but I didn't worry too much about that.
Wednesday, February 11: Ron was scheduled for the OR at 2 p.m., but he was not taken in until 3:30. They had told me that it should just be an hour to an hour and a half. The OR called the floor nurse at 5:45 to say that there was about an hour to an hour and a half to go. At this point, I knew that they were removing his jaw. The doctor came to Ron's room to talk to me at 6:30 p.m. He said that they did have to remove the jaw, and that it would not be replaced. He felt just terrible about this outcome, but I told him I understand that it's no one's fault and that infection is a huge risk with any extensive surgery. He also had to remove a lot of infected tissue. He left part of the incision open on the right side and placed antibiotic packing in the space. Some packing will be removed every day. The only thing I worried about was Ron's future ability to eat without a right jaw, but the doctor said that he thought Ron would get to the point where he could at least eat soft foods. I just know that we are in the best place for the best possible outcome and if anyone can eat again, it will be Ron. The following day, Ron's plastic temporary trach was replaced with a steel one that could end up being permanent, although we certainly hope it won't. It is much easier to take care of though. The days following went well. Ron was feeling much better everyday with the infection gone, and the remaining packing was removed on Sunday, the 15th. On Monday the doctor said that Ron could go home on Thursday. Tuesday his staples were removed from his scapular incision. We didn't get a good picture of it, but there were 38 staples in there!
On Wednesday, February 18, I had just been getting ready to go to the hospital at my daughter's apartment when I got the phone call that Ron could go home! YAY! Released a day early! We all got ready very quickly and I packed up all of my things so we could get to the hospital ASAP. Of course, once we got there we had a lot of sitting around and waiting as per usual. We had a ton of instructions to go through, as well as talking to the pharmacist about all of his medications. We finally got out of there and dropped off our daughter and son-in-law and got back home at about 5 p.m. We were thankfully sent home with a ton of supplies as well as a case of nutritional supplements for his PEG tube. Our poor son and other daughter were sent out with the prescriptions to get them filled for his evening doses. The Walmart here did not have the liquid antibiotics. They called the local Walgreen's, and they didn't have them either. So they had to drive to another town to that Walmart to get them. It took them about 3 hours to get back home from what was supposed to be a very easy errand.
Our days now are trying to get into a good routine. I follow spreadsheets every day so I don't forget anything. I didn't really realize how much there would be to do every day. Ron is feeling better than expected. He is only having pain medication about three or four times a day. His biggest complaint is still the amount of expectorating he has to do although it is much less now than when in the hospital. One very unexpected thing happened on Thursday. I had checked our bank balance online and realized that a paycheck had been deposited for me. I knew this was a mistake, as I have missed 3 weeks of work at this point. I decided to go in to school on Friday so I could talk to my bosses and figure out if I needed to sign papers to take more time off and to let the payroll secretary know that there was an error made. Later that night, I checked my work email. The administrator had written to me to tell me that my friends at work had donated some of their sick days so I could get a paycheck. Well, I lost it and started crying. I love my job so much, and they are so good to me there. I went in on Friday and it was very emotional for me. A lot of the students came up and hugged me, and they had also made me a huge card saying that they missed me. I was also given a card, signed by many friends at work. I just glanced at it because I saw so many names and there was cash inside, and I knew that I would lose it if I read it right there. I made the rounds to say hello to as many as I could, and show them Ron's photo. They thought that his face must be sunken in since his jaw was removed, but it isn't because there is so much back muscle in there, it is quite firm. I found out while I was there that I am not eligible for the FMLA because I don't work enough hours through the year, but I was told that it didn't matter. I could take as much time off to be with Ron as I needed to. I am hoping to return to work the second week of March. I miss it so much. I am so lucky to have the job that I have, and so many wonderful friends there. It truly is like a family.
We have an appointment with the surgeon on Thursday, Feb. 26. I would imagine that the staples will be removed from Ron's face and neck at that appointment. We have an appointment with his Medical Oncologist on March 2 to discuss when to begin chemotherapy. Ron will have a swallow study scheduled within the next few weeks, also. We need to find out if he is able to swallow again, and make sure that he does not aspirate into his lungs. All in all, we feel so blessed: That he made it through the surgery, still has some tongue left, and, oh yeah, the nodes removed were all negative for cancer!! Also, our wonderful families and friends. We love and thank you all for your good wishes and prayers.