Luke Dugdale
TrachKid Profile
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Tuesday, February 9, 1999, was to be the birth of our first born child. We were very excited and everything was ready; the nursery, us, and friends and family. We went to Lincoln General Hospital, Ruston, LA. The doctor started labor about 8:00am. Our pastor and family and friends were there awaiting the birth. About 5:00pm they rolled me in for delivery. Scared and excited we were about to have our first child. Luke was born shortly after that. I knew babies were supposed to be blue, but no crying!? I asked the doctor, "Why isn't he crying?" He said, "not all babies cry." I knew anyway that something wasn't right. The nurse took him and in less than a minute she bundled him and told us she needed to take him out, she didn't like the way he was breathing. Todd and I just looked at each other in shock I guess. They came back and told us they needed to get him to a Children's hospital. With discussion, we chose to send him to Arkansas Children's in Little Rock, AR. The pediatrician that looked at him said there was something blocking his airway. Our pastor came in and prayed with us and assured us that God loves us and He would take care of everything. About five hours later the helicopter arrived to take him away. They rolled him in so that I could touch his little hand and say goodbye. I told my husband to go since I could not. He had to drive of course (3 hours away). The pediatrician was keeping in touch with the doctors at the Children's hospital to let me know what was going on. While Todd was in route to the children's hospital the doctor phoned him to get permission to perform a tracheotomy. I did not know this until the next morning or course. The doctor would not release me until Thursday. Those couple of nights in the hospital were long. I could hear other babies crying for their moms and longed to hold and nurse mine. Thursday came, and we were on our way. Todd and I left and arrived at the Children's hospital that afternoon. The principal diagnosis was a Glottic Web (subglottic stenosis). The part where the vocal cords and below that was supposed to be apart had grown together. At birth he had about a pen hole of airway to breath on. They tried to stretch, but no luck. They then performed the tracheotomy. The doctor told us that depending on growth, and other factors, we would wait on the major surgery.
Todd had already warned me what to expect him to look like. Luke did have lots of stuff on him, but I tried to act normal so that Luke would not since my insecurities. It was wonderful to finally see and hold my boy! The first couple of days we were there in NICU. The nurses took care of him. We had several meetings with nurse staff, doctors, etc. to prepare us for what kind of care we would need to be taught. On Saturday we began to room-in with him. The nurses were there, but we could stay with him 24 hours a day. By Thursday, after being taught everything we needed, we were on our way home. I remember telling everyone I would never be able to do this to my child. It seemed so difficult and to know how quick something can go wrong.
We came home to equipment people and a home health nurse for 2 weeks. They got us set up with a pulse oximeter and a humidification system, suction, and oxygen is here if needed. As the days passed it did get easier to do what needed to be done.
At 4 weeks of age Luke was diagnosed with Pyloric Stenosis. That's the muscle in the stomach that wouldn't let food go down. That explained the projectile vomiting we'd seen since birth. Being breast-fed, I knew that wasn't supposed to be happening. We spent 6 days in St. Francis Hospital PICU in Monroe, LA, where they did surgery to correct the problem. Finally back home again, everything was going well. We found a local pediatrician to start seeing for his now 2, 4, 6 month checkups. She suggested I keep him at home at least until after the flu, virus season was over. She told us he would be more susceptible to germs and sicknesses. We were not aware of that at first. In the meantime, we had gone back to AR for checkups on his trach site. Everything was looking pretty good. In July, the doctor told us to plan on coming in October for our first surgery. (Laryngoscope) After the sick season was so called over, we did start taking him out some. To church, eat outs, etc., but still being very careful about hand washing, touching, and anyone who was sick. In August his 02 stat was dropping and he had a cough. We visited the doctor, but ended up admitting him to the hospital. They found he was in early stages of bronchial pneumonia. We stayed a couple of days in the hospital. After that we decided and with doctors orders it was best just to keep him at home. We don't get him out unless it's just to ride around or go walking, as long as he's not around people.
October 18th was our first surgery date. Dr. Bower went in and tried to laser some of the tissue, but there was to much there. He told us to plan on reconstruction. We set the date for Wednesday, Nov. 17th. His surgery was about 2 hrs. long. Everything went well. We went to the PICU to see him as soon as we could. However, Luke did not look very well. There was a lot of bleeding around the neck and where they had taken rib cartilage. I guess I just wasn't prepared. He stayed in PICU until Friday and then they took us to a room. They sent us home on Tuesday with lots of medicine to take. We were to go back in about 6 weeks to have the stint taken out. January 5th they took out the stint and down- sized the trach. Three weeks later we went again and they removed granuloma and said it still looked ok. The last time they went in Dr. Bower said at this point it looked like they might have to put in a keel where the vocal cords and voice box are. It keeps trying to scar back over. We are going to look again first I think. I hope for Luke's sake it will be over soon.
God has been very good to us. He has blessed us with a wonderful child, family, pastor and church that prays for us regularly. Luke is a very happy I year old now. He is VERY active and keeps me on my toes.
Update - May 2000: On April 3rd we went back for more scar tissue removal. Dr. Bower was real pleased with his progress with the passy-muir valve. The area where the vocal cords are is still scarring, but he did not put the keel in at this point. He down-sized the trach to a 3.0 and gave us a cap. It took Luke about a week and a half to get used to wearing it. He didn't like it at first. He has been doing good ever since. May 12 we are to go back for just a doctors visit (no surgery!!). Dr. Bower said possible decannulation at that point!!!! We are excited to see how everything is going. It's kinda scary to think about it in a way.
Update - July 2000: On May 12, Dr. Bower just did a check up to see how everything was going with his cap. He wanted to wait another 6-8 weeks and then plan for decannulation. We went back on July 18th for decannulation. He slept Tuesday night with it capped and monitored. He did fine. Wednesday morning they came in about 6:30am and removed the trach. Luke didn't even act as if it was gone. He rolled over and got up. We played in the room for a while and then went to the playground for a while. We came back in to eat breakfast. He coughed a little then and after that did not sound just right to me. I went out to the nursed station to get our nurse and she followed us back into the room. She was going to put a dressing on his stoma site. He coughed again and then we really don't know what happened. He never caught his breath again after that. He turned blue and passed out before I could get his trach back in. I think it caught all of us by surprise. I really wasn't sure he was going to be OK. Dr. Bower did a swallow study after that, just to see maybe if he choked or something. Luke did not cooperate very well for that. He scheduled us for September 18 for another surgery to look and see if anything is still there and maybe try decannulation again. I'm really kinda scared after that incident. I feel maybe we are rushing a little bit. I want to be sure everything will be ok.
Update October 2000: On Sept 18 we went for another scope. He lasered some off again. He wants to do another scope before trying decannulation again. He said in about 3 months. That will put us into Dec. or Jan. which is right in the middle of cold and flu season so he is going to wait until early spring to try decannulation again. He was very pleased with his progress at this point. We are comfortable with waiting a little longer because we had a couple of scares with him choking or getting to upset or something. We feel better waiting until most of all the sickness is over as well.
Update January 2001: January 8th we went for another surgery to see how things are looking. Dr. Bower did not have to remove anything. He said it looked good and was growing as it was supposed to. He planned another attempt at decannulation for March 13th. I am a little nervous, given the events of the last attempt. However I am excited for Luke, I know it is the best thing for him.
Update March 2001: March 13, we went in for scheduled decannulation. Dr Bower admitted us to the hospital for a night wearing his cap then the next morning they came in and pulled the trach. Everything went great. We stayed one more night to see how things were going to go with his stats. All was well and I was kinda excited about how well things had gone. We came home on Thursday afternoon. Luke was a little restless that night in sleeping, I figured was just the change in no humidifier running. His stats were good. Friday all was well until later afternoon he began to loose his voice. We had his stoma covered with gauze and a band aid. I figured he might be getting sick from being in the hospital because there were a lot of sick one there and I think they even put one in the room with us that was sick! I called ENT doctor just to make sure I shouldn't be alarmed. He told us to bring him to reassure us, but we decided to wait the night and take him in the morning. Most of the night we could hear congestion and some wheezing, but stats stayed good. He was up and down all night, but eventually settled back down. About 5:00am he awoke again and I tried the usual method of getting him back to sleep, but he could not catch his breath. I tried blowing in his face, and even took him out in the cold night air, but still no luck. He was turning blue again so we turned on the oxygen, but by then he was just about passed out so we replaced his trach. Luckily it did go back in. The doctor had told us usually after about 48 hours it wouldn't. There was some bleeding, but he was breathing again. We called the doctor again and I'm not sure he was to happy we put it back, although we thought it was best. It is hard to watch your child struggling for air and do nothing until they pass out. And then if they don't start back breathing after that CPR? Yes, but what if that doesn't work? I feel like he tried to breath and couldn't because he had this scared look on his face, like I'm trying and can't. We took him to our local pediatrician on Saturday morning. He was sick. Had some swelling in his nose and throat. I don't know exactly what happened, but I am thankful he is ok! Dr. Bower is to call me for a consult to see what to do next.
Update April 2001: April 3, after 2nd failed decannulation we went for a scheduled appointment with Dr Bower to discuss what to do next. He wanted to do a sleep study, but after discussion with us decided to put it on hold. We all felt that him getting the URI was what caused the problem. He suggested we wait about 6 more weeks and then call and discuss it again. He mentioned maybe trying it at home with a nurse present this next time maybe instead of the hospital again. I think before we do that I am going to see if he will just take one more look with scope first.
Update July 2001: July 5, 2001 we entered the hospital for a sleep study. Luke did very well with everything being stuck on him. The results turned out fine we were told. The following day we were schedule for OR to take a look at the airway. When we finally got in it was a very quick procedure. Dr Bower said everything looked good still and that it was about the same size as the last look (which was in Jan.). He did laser a little part off, but I don't think it was because he needed it , but because he was in there. I also think it is the part that is just going to keep scarring back. We are to go back in August to try decannulation again.
Update October 2001: Oct. 16th, 17th we took Luke to see Dr Cotton in Cinncinati, Ohio. We felt we needed another opinion since having so much trouble decannulating him. I found Dr Cotton by internet and also a local ENT Dr gave us his name. On the 16th we only had appointments with a lung doctor and gastroenterology doctor. On the 17th Dr Cotton was to take a look with the other 2 doctors in surgery to see what things looked like and take some biopsies. After surgery they spoke with us and we had some answered questions, but it wasn't exactly what we wanted to hear. The part that continues to scar over is the problem area. Dr Cotton wants to place a keel (or possibly another rib graft) to let this area heal. Also his tonsils have to be removed. I was glad to know what has been happening, but I do not want to put Luke through any more surgeries. He is getting to be very aware of whats going on and it is very difficult. They also have to check for reflux before doing any further surgery because it can mess up the surgery site. They put in the pH probe after surgery, but Luke was not handling it very well. They did a chest X-ray and it was kinked so they removed it. I told them not to put another in we would just do it later. We have not made plans for the surgery yet.
Update March 2002: Luke has finally been scheduled for his surgery with Dr Cotton on March 27th. This will be a tonsillectomy and the keel placement and possible adenoidectomy. On March 25th they will do the pH probe to make sure there is no silent reflux to mess up the airway reconstruction after surgery. Then 2 weeks later, April 10th, they will remove the keel. This hopefully will be the last surgery. Also at the end of January he got a really bad cold or bronchitis or something and had a lot of trouble with it. Fortunately, we stayed out of the hospital. However, Luke is now being treated for asthma. Luke's pediatrician has mentioned this before, but we did not treat him for it. He is now doing plumicort inhalers for 3 months. This explains a lot of the problems we have when he is sick. Maybe with this under control it will be easier to handle. Other than this, Luke is doing wonderful with speech, I think he is really ahead of his age. He just turned 3 and can name just about every piece of heavy equipment that exists.
Update April 2002: March 25th Luke had a pH probe done in Ohio to test for reflux, which sometimes causes scarring to return. He did very well getting it in since they do not sedate or anything. However, after we got to the room he only drank a little and never did eat anything to amount at all. They did get a result of something that wasn't much. He is being treated for a time with reflux medicine anyway after surgery for preventative measure. However, the taste is not very good so he is not taking it very well.
March 27th Luke had the keel placement, tonsillectomy, and adnoidectomy. Surgery was 2 1/2 hours and went well the Dr said. Recovery however, did not. He either caught a cold or something, but was on O2 for almost 5 days. After we got out of the hospital he began to get much better. It took him a few days to get back to himself.
April 10th was the keel removal. This surgery was about 1 1/2 hour. He did very well with this. He was back to Luke not long after surgery. I guess he'd been through so much before it just didn't bother him much.
We are to return May 8th for another scope to see how things are looking. Don't know exactly if we'll try decannulation now or wait a little longer.
Update May, 2002: May 8th we went for another scope. Wonderful news! The Doctors said everything looked great. They wanted to do a 24 hour capping trial and then decannulate. We were and are happy everything is looking great. However, we asked if we could keep his trach and cap him for 24 hours (all the time) instead of pulling it this time. He has not been sick since the last major surgery in March so we were not sure how he would handle this, so we wanted to do this first. They wanted to keep us for a 48 hr capping trial to make sure all would be ok. We want to make absolute sure this time when it comes out it will stay out. Some may think we are crazy, but I just don't want to take any more chances and give Luke anymore disappointments. When we were on the way back home Luke did get a little cold. The runny nose, coughing, etc. He did very well. Even wearing his cap at night he did ok with it. This was what we wanted to know. When we got home I called and scheduled the next appointment. June 19 is planned for another scope and this time decannulation. Hopefully, Luke will be ready as well.
Update July 2002: June 19, We went for another check up and scope procedure. The Dr's said he looked very well. There is a little bit of scaring, but nothing to be to concerned about at this point. We stay in the hospital overnight and plan for decannulation in the morning. I woke Luke when the Dr's came in and let him take the trach out himself. We had to stay 48 hours after decannulation to make sure everything was going to be ok. He did very well. We are home now and he still seems to be doing ok. The stoma has closed some, but not all the way. We are to go for another check up in a month or so. He says he misses it sometimes, but yet he shows everyone it's gone.
Update December 2002: We went in August for a scope to see how everything was going. The Dr's said everything looked fine, we'd plan on closing the stoma in 3 months.
November 25th, we had surgery to close the stoma. We entered the hospital the night before just to make sure that there was no problems I guess. Surgery went well and they said everything looked good. However, even though we were told what would be done, it was still a little shocking. They put in a temporary trach, until Luke awoke from surgery. They removed the trach as soon as he was awake. It was just bigger than Todd and I thought it would be. They had to remove the tissue around it that caused it not to close to start with. Didn't think it would close, but now, 2 weeks later it is just a scab left. It was kinda amazing to see how well it did close. We are to return for another scope in March to see how it all looks again.
Update, March 2004: Luke is doing very well and we are now on a yearly checkup. So far everything is going well.
Update, August 2007: Luke got a good report on his airway. However, they did a voice analysis test they had never done before. We found out that only one vocal cord is working, this is why his voice is not very strong. In later years, if Luke wants, we can try to get a stronger voice, but to us it is perfect. We go for check ups every 2 years now.
Kim Dugdale
todd22kim@wildblue.net
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