At Home From Trach Surgery

After a week in the hospital, I was able to come home. I went home on a Tuesday around Noon. Later that evening, a home health nurse came to set up my home health care. I had a temp of 101 and really high blood pressure. She became worried and called my doctor. He told her to give me 3 ibprophen and 2 tylenol. I had an appt with him the next day. By that time I was discouraged. It got worse when I coughed most of the night. I woke up extremely tired and hurting from sleeping in the recliner, and coughing so much. I got to my doctor's appt and ended up crying. The receptionist came in and gave me a hug and cried with me. My good friend, and nurse gave me a hug and told me it would be ok. Dr. Black gave me a hug too, after I begged him to just take the trach out, and told me that they would get me through this. That really meant a lot and I went home feeling better. It felt good to know that I had such caring and kind people taking care of me. That night I developed another mucus plug. Ben tried to suction it out, but it got to where I couldn't breath at all, and it wouldn't come out. Ben told Jennifer to call 911. She was on the phone with them when I finally reached up, yanked out the inner canulla, and coughed out the plug. By the time the volunteer responders got there I had gotten the plug out and was sitting in my recliner, wore out. They took my vitals, canceled the ambulance, and left. Things slowly started to get better after that. I still had occasional coughing spells, the bad ones made my head, neck, and shoulders hurt really bad; but they got further and further apart. I got to where I hardly had to suction my trach out at all. I was amazed at how tired I could get in the first few weeks. I could only go a few hours before I was ready for a nap.Now I can go most days without a nap at all. Although on days where I have to go places, like church, I usually end up taking a nap. The past six weeks have been like a roller coaster. It has had many ups and downs, but God has been there through it all and has given me encouragement and the strength that I have needed. He has given me amazing friends who have checked up on me and have been an awesome support system. God has also given me an amazing medical staff. My ENT, and the staff at the Gardendale office, and also my new Rheumatologist, and their infusion staff, and my new primary care doctor, and also my home health nurse, have all been so helpful and comforting. I had my first of 4 IV infusions yesterday and it went well. I also got my new, custom, talking trach about a week ago. After 7 weeks of not being able to talk, it has felt awesome being able to talk again. After these 4 infusions it will be about 2 months before I will see any changes, and will do another set of 4 infusions in November.I'm praying that by the end of the year, the infusions will have taken care of the inflammation in my trachea, and I can get rid of this trach. I know that this might not happen, but this is my goal for now. My next post will be about the lessons that I have learned during these past 2 - 3 months of health problems and trach surgery and recovery.

Tracheostomy: The Surgery and the Hospital Stay

   When I was told that the tracheostomy surgery, and living with a trach, would be tough, I thought that I understood that. I didn't! I filled my hospital suitcase full of yarn to crochet with, and notebooks to journal in. I thought that the 5 - 7 days in the hospital would be fairly easy, and I didn't realize how tough it would be not to be able to talk.

   On Tuesday, April 17, 2018, I went in to the hospital to have a tracheostomy surgery. The surgery went well, and I woke up felling pretty good. I spent that night in the surgery ICU, and the next day I was transferred to a regular room. The first few days were fairly uneventful. They consisted of trach care, sleeping, and eating. A few nights into my stay I ended up with a mucus plug. A mucus plug is where the mucus, that the respiratory system is producing, gets dried up and blocks the airway. My nurses were great and took care of it right away. I was able to get up, with Ben's help, and use the bathroom. I mostly slept, I could only stay awake a little bit at a time. On Wednesday, I started getting visitors from DME (Durable medical equipment) and Home health, to set up everything that I would need when I got home. Somehow, communication got crossed, and I was told I would probably get to go home on Friday. I was overjoyed. I hate being in the hospital, and I couldn't wait to go home. Well Friday came, and when Dr. Black finally came in to see me, around super time, I was told I wouldn't get to go home until at least Monday. He said that he wanted to be cautious and not send me home too soon. I was extremely upset. I cried so much that Ben started crying with me. (I'm sure he will deny this) At this point, the hospitality lady came in with my supper. I guess she noticed that I was upset, and stopped to tell me that everything would be ok. I will always remember her as my food fairy.
 
   As I look back, I can see how God sent me little reminders of His love each day. Whether it was a kind word from a stranger, a friend making sure the nurses were taking good care of me, friends visiting and bringing sweet little gifts, or a bouquet of flowers from the ENT Associates Gardendale staff, I knew that God was looking out for me, and that He loved me. I look back at all the help we received from sweet friends, and realize how blessed we are. They helped so much in our time of need, and especially when things got bad, and I thought I couldn't take anymore. One shining light in this time was my amazing husband. He stayed by my side almost the entire time. There were times that he refused to leave to get him some food, because he was afraid that he would miss the dr coming in to speak with us. He slept in uncomfortable chairs, and assisted the nurse when she needed it. He was exhausted, but refused to go home to get some rest. Since I couldn't speak, we had to get creative when it came to me communicating with him at night. He gave me a box of tissue, the small kind you get in a hotel or hospital, and told me to throw it at him if I needed him that night. I can't remember why I needed him one night, but he was so exhausted, that when I threw the box of tissues at him, he slept right through it. This happened twice that night.

   *Warning, this is where things get a little graphic*
Things were going good, it was Sunday and I was getting ready to go home the next day. We had some family come visit. During their visit I started coughing really bad. They stepped out so Ben could suction my trach out, he had gotten really good at being my nurse and we didn't really need to call the nurse for anything anymore. They came back in and we visited some more, but I started coughing bad again. They decide it was time to go so that I could get some rest. I had been assigned an awesome nurse that day. She was so sweet and caring and knew what she was doing. A little whule after our visitors left, I started coughing bad again. I felt something warm on my neck, but didn't think much of it. Ben looked at me and said I was bleeding. Turns out there was a lot of blood coming from under my trach. Ben hit the nurse call button, then decided to just go out in the hall and get somebody because we needed somebody NOW. While he was grabbing the nurse, I was trying my best to soak up the blood. I emptied one of those small tissue boxes and still it was running. Ben comes back with my nurse, she takes one look and grabs a big towl and starts helping to soak up the blood. She ends up calling the Rapid Response nurses because it was an active bleed. She had one nurse call Dr. Black to see what he wanted them to do. All this time she is mopping up blood and holding pressure to get the bleeding to stop. Dr. Black had said to call the ENT Associates on call dr, but by the time he got there the bleeding had stopped. He decided to pack under my trach with some surgical gauze. He used tweezers, and let me tell you that hurt like crazy! I was about ready to reach up and strangle him. Anyways, he said that should hold it. but if I started bleeding again to call him.

   That took a lot out of me, so I was not quite asleep, not quite awake, when my supper was brought in. I started feeling like something was coming up my throat at that point, and couldn't stomach the nasty pureed mush they called food, so I didn't eat. It turned out to be a good thing, because I started bleeding again. This time it was coming out from under my trach, and also up my throat and I was coughing up gobs of blood. My nurse called the on call dr again, and gave me a towel to spit the blood in. I ended up soaking that towel and needing another one by the time they wheeled me into surgery to fix the bleed. Turns out that a spot near my thyroid had started the bleeding when my coughing irritated it.

   I woke up the next morning back in surigical ICU. They had sedated me so that I wouldn't irritate the area further. Turns out that sedation makes me hallucinate. I thought I heard a male monster beside me talking to me at one point before I was fully awake. I think it was just the nurse call box though. When I was finally fully awake, the nurse came in and tried to get me to use a bedpan. I know this might be a little TMI, but I just cannot use a bed pan. I finally convinced her to let me use the pull out toilet they have in ICU rooms. I slept a lot that day and the next day Dr. Black came in, said I was doing great, and I finally got to go home.

   I have learned a lot from this experience. 1.) Listen to the doctors and when they say you need more time in the hospital don't be a stubborn cuss, 2.) God's timing is perfect. He knew I would have been up the creek without a paddle if I would have went home on Friday and had the bad bleeding while at home. 3.) God loves me and knows what is best for me, even when I don't like it. Thank you for taking the time to read my story. I was going to add the weeks after I came home in this post, but have since decided that would make it too long. I will try to get that story out by the end of next week.