When I arrived at the hospital, Patrick was resting, but soon woke up and it was very apparent that he was depressed and frustrated. He was saying things that you only hear your spouse say in nightmares. I was saddened and frustrated myself. It seemed like we needed to get a better handle on his medication. The medication plan that was working well the night before was no longer working at all. I spoke with his nurse and told her to call the doctor because something needed to change. We would go through a cycle. He would be asleep, wake up, be depressed, get medication, then the cycle would start all over again. Once we got a handle on things, the tension in the room subsided, and Patrick spent most of the day getting some much needed rest.
Patrick was told that morning that Dr. C. (Dr. D.'s Fellow) would come in and change out his trach for a smaller version. One that would allow him to talk. Around 4 p.m. Dr. C. and a resident came in. They explained what the procedure would be like and set up their supplies. Once they were ready, they asked me to leave the room. It was probably better that way. I knew he was in good hands. Dr. C. was the one who intubated Patrick post operation. I sat in a chair outside the room. I heard a bit of coughing then what sounded like a robotic voice. Thrilling. After they cleaned Patrick and the room up a bit, he asked for me to come back in. I saw the relief he had immediately. Some of the anxiety he had about not being able to breath well had left and now he could talk, so a second piece to the anxiety was diminishing.
Dr. C. told us that a plug would be ordered and they would plug his trach for ten minute increments and see how he handled things. Once over that hump, if he was doing well, they would plug it for several hours. The plug was sent up from the materials department that evening after I left. My phone rang around 9 p.m. Patrick was calling me. I could hear the relief in his voice and he explained how much easier it was to breath and that talking was so helpful. We chatted about a few things and then I spoke with my sister who was staying with him at the hospital again.
I went to sleep feeling so much better about where things were. That night I got six hours of sleep in a row. The longest stretch of sleep in over a week. Although, I was woken up at 4:45 a.m. and never had the opportunity to go back to bed, I felt pretty good.
I got a text from my older sister the next morning telling me to call when I was awake so she could update me. She informed me that the plug had been in all night and Patrick was a new man. He made a few laps around the unit and was cracking a few jokes. He was feeling so well, he drank some chicken broth and ate some applesauce. More good news. I was in disbelief at the huge turn around he had made in just 24 hours. She told me that Dr.V. was in to look at his flap site, had removed the drain, and changed the dressing. My sister also told me that Dr. C. would be in to remove the trach that morning, and Patrick could go home. I was still amazed and loaded the car so that I could get to the hospital. I figured I'd be there for a good portion of the day, but I was wrong. A 40 minute commute left time for Dr. C. to get there. He removed the drain in his neck, his trach, and finally the NG tube, which was Patrick's least favorite part. We were given discharge instructions, packed with supplies, set up appointments to see Dr. D. and Dr. V. the following week and were on our way. I was there for less than two hours.
Once home, Patrick made himself comfortable on the couch. I worked on feeding our two children. Several family members were scurrying around helping me with the girls and cleaning. They too were not anticipating his early arrival. I dodged off to the pharmacy to get his prescriptions. It took a few times, but once again we got his medication under control and got him settled into a routine, things went fairly smoothly. We are still dealing with a bit of anxiety, but it's getting better by the day.
We change the gauze and tape that covers the hole where is trach was twice a day. Over the next week, the hole will close by itself from the inside out. We have to be sure Patrick keeps pressure on the opening when he talks, coughs or sneezes as the more air that passes through the hole, the longer the healing takes. He swishes with some antiseptic twice a day, and we have changed the bandage where the skin graft was taken from his leg due to a bit of blood leakage. His large incision on his neck requires no attention other than watching for swelling or redness. We do not have to do anything with his bandaged arm other than keep it dry. I've got a chart to keep track of all of the medications, bandage changes, and mouth swishing.
It became quickly apparent that I would need another set of hands at home at all times. Running up and down the stairs, nursing, pureeing foods, cuddling our oldest, crushing pills, feeding our oldest, changing diapers, etc. were just a few things that I was trying to do. One of my aunts stayed to help until the girls went to bed and then my brother-in-law graciously offered to stay here to help with Patrick during the night. I prepared all of his meds and set them up in the kitchen. I set three alarms on his phone. He woke up every three hours to give Patrick his medication. I'm thankful for that because I was up all night with our youngest.
Patrick has lost only five pounds! I consider this a great number. He is doing fairly well with eating. We are sticking to a soft and liquid diet all the while working to be sure that he gets something from all of the food groups. He's progressing, but is still concerned about the flap and is very cautious not to get food stuck in it. Patrick is making slow and steady progress.
The best news was delivered by Dr. D. the first evening we were home. Dr. D. called to tell us the pathology report had come in. The boarder line around his lesion came back as negative for Carcinoma and his lymph nodes were negative as well for filtering cancerous cells. Home run!!! Once healed from the surgery, Patrick will require no other treatment other than periodic scans. We are thrilled that radiation and Chemotherapy will not be part of our journey.