Sean
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Hi, my name is Kim, my husband's name is Dave and we had a wonderful baby boy on August 18, 2001. We named him Sean. At about six months into my pregnancy, my doctor said I was carrying a lot of excessive fluid and that I should have a 3 hour glucose test done. That came back ok so I went for another ultrasound which also looked fine. By 71/2 months pregnant, I couldn't walk. I was so full of water my stomach was measuring as if I was having triplets. I ended up on bed rest and had 2 amnio reductions. Genetically my son also looked fine. So at 36 weeks we had a c-section,. Sean seemed fine but having a little trouble breathing. We were told this was normal and he was given some medication to help his lungs. After a couple of hours Sean was moved to the NICU and was intubated. After 2 days they let him breathe on his own for two days but he was still struggling. Sean also had a very tender right arm and the doctors decided to x-ray to make sure everything was ok. It looked like his arm had been broken and was repairing itself. On day four the doctors sent Sean to Cincinnati Children's Hospital to see an ENT. During his stay there, Sean had an ultrasound that found an abdominal mass that was growing rapidly. The ENT found that Sean had coanal atriesia (blockage of the nasal passageways) and Sean was trached at 7 days old. On day 10 he had surgery to remove the abdominal mass. It was benign, thank the Lord. On day 16 he was moved back to Dayton to Children's Medical Center. There we spent 26 days learning to care for our baby and waiting on test results from the Mayo Clinic about the mass and his arm. The doctors told us they were 70% sure he had the bone abnormality Caffey Disease but couldn't be 100% sure. We've had no further problems with the mass or his bones. In Nov 2001, Sean's first scope, his coanal atriesia had corrected itself, but he now had tracheomalasia and subglottic stenos is. In Dec 2001, we went to see Dr. Cotton. Sean was scoped again in Feb 2002. The tracheomalasia has corrected itself but the subglottic stenosis has gotten worse with granuloma. In May 2002, another scope, Dr. Cotton said everything was growing right along and vocal cords were moving. Sean now has a Passy-Muir valve and is going to speech and physical therapy. He is making some sound around his trach. We go back to Dr. Cotton in Nov 2002 and if everything still looks good he said we would talk about a plan. Sean will be 15 months old then. We're told it can be corrected with surgery but need to be patient and let him grow. He is such a sweet baby and is growing pretty normally. I just wish I could keep him well. Two weeks after receiving the Synagis shot to prevent RSV, Sean was admitted to the hospital with RSV. I have 2 other children in school and it's really hard keeping them all well. Sean also has colonized pseudomonas bacteria that is really resistant to antibiotics. I really find that reading about other children and their experiences helps me a lot. It gives me an idea what we're up against and what could be in our future. Thanks for this trach page, I don't feel quite so alone in this.
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Update, Feb 2003: Sean is growing fast and doing everything an 18 month old does. It has been a while since I originally wrote in and thought I would send in an update. Since school started this past fall, Sean has been hospitalized 2 times. Once for pseudomonus in October and pneumonia in January. We just got home from a scope and received bad news. Sean has severe sleep apnea due to glossoptosis which is his tongue falls over his airway. So now we wait for him to outgrow this. When Sean got his trach we were told he would only have it 2-6 months, then we were told 2 years, now we're told before he starts kindergarten. It was a pretty hard blow. Along with the scope Sean also had a stoma revision done. The granulation tissue was completely blocking his airway, so some of it was removed in hopes that he will be able to tolerate the PMV. It has really helped with trach changes. He doesn't turn red anymore. Sean is currently in speech therapy and we have been signing to him, but he is not signing back to us. We will keep being consistent with the signing and hopefully he'll eventually catch on. We are to go back for another scope and to have his adenoids removed in June 2003.
Update, Dec. 2003: Sean is now 2 years and 4 months old and has really grown since February. At around his 2nd birthday he started signing. We were all excited. It's like a light bulb turned on and now he is communicating. He is also using a picture board that his therapists and I made that has pictures of foods and activities. He just points and signs "please." He has been using the PMV with 2 holes in it but now we are going to try with only 1 hole (per doc orders). On the medical side, we just returned from yet another scope and actually received good news this time. Doctors are ready to do the reconstructive surgery. We were somewhat surprised since a year ago we were told we'd have to wait until age 4 or 5. The doctors feel he's grown enough for the LTP but we still have the tongue issue. His tongue is still falling over his airway but not totally now. We are to have his tonsils removed, including the lingual tonsils on his tongue. The doctors have seen this work successfully in correcting sleep apnea and hope that this will open up his airway further. We are supposed to schedule this in 4-6 weeks then the LTP around April. I've read a lot of other parents struggle with the reality of losing the trach. While this is what we strive for it's really scary when you've gotten somewhat used to living with the trach and its care. I'm going to be terrified when the first cold hits. There always seems to be obstacles that pop up unexpectedly so I'm trying not to get too excited yet. I have been visiting Aaron's Trach Page for a little over 2 years and it's been a great support. God Bless and take care!
Update, January 2004: On January 16th 2004, Sean had tongue resection surgery. He also had his lingual tonsils taken out, which are located on the back of the tongue. This was done to open up his upper airway since his tongue falls back over his airway. He has sleep apnea due to glossoptosis. We were told that this surgery was painful. So we were pretty worried about it. Well, Sean acted like nothing happened. He was eating Mac & Cheese and drinking juice as soon as we went to the floor. We stayed overnight and went home the next evening. A couple of weeks after the surgery there was a noticeable difference in his sounds. They were louder and he had a wider range. It is just amazing how resilient our kids are. We are now scheduled for single stage reconstruction on March 19th.
Kim
