Nicholas
TrachKid Profile
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Nicholas was a 27 week, 3 lb 13 oz preemie. I spent 7 weeks in a high risk OB ward 2 1/2 hrs away from my family prior to his arrival. He was an active baby - in fact anytime the nurses felt their monitors were not working they would come in to track him becasue he always gave a good trace. My water broke 3 weeks before delivery but the delivery was as normal as a preemie delivery can be. He spent less than 8 hours tubed and needed only a nasal canula after that. As time passed, Nicholas learned to breathe and eat at the same time. He had apnea problems, but nothing out of the ordinary. He came home from the NICU at Centennial in Nashville as a feeder grower at the local rural hospital. I was concerned about his care until I found out that the local pediatrician's nurses trained at Centennial's NICU as part of their required training for the nursery. We are 3 hrs from a large city, with Nashville and Memphis being equally as far. ( This became a very large problem later on.)
Nicholas came home to us with continued apnea but no other problems. The other two children had the job to goose him if he forgot to breathe in the car. He slept on me to regulate breathing. This lasted about a month. I noticed that he was developing colic problems similar to my other son. A few days later he began having breathing difficulties. I called the pediatrician's office to set an appointment and as they were asking me if I could come in the next day, he stopped breathing. I got him started again but we went from the doctor's office to the hospital. She diagnosed him with a major structural problem and croup. He didn't improve overnight, satting in the 70s when he got upset. The decision was made to get him to Vanderbilt. Both helicopters were down - which was a blessing in disguise - and he desatted in the 40's when the EMT tried to move him to the gurney for the ambulance ride. They refused to take him because he was too unstable and there were no adequate medical facilities on the trip. He ended up with a Lifeflight airlift by the flight nurse that won flight nurse of the year that year. I got to take that ride. I was definitely superfluous. Everyone else was calm and efficient and knew more than I did, so I went to sleep ( for the first time in 48hrs). The crew thought I was funny.
At Vanderbilt, we met the ENT surgeon. When he heard Nicholas's history and how we adapted to Nicholas's breathing problems, he suggested this wasn't normal. Apparently, we adjusted too well. Nicholas had a 90% blockage of his trachea and croup. The next day he had a bronchoscope and a trach was recommended strongly. He was trached and sent to the PICU. He had a reaction to codeine ( runs in the family) which caused some breathing difficulties. Narcan reversed that. He was released to the floor. He failed a swallow study after the trach, so he had an NG tube. He failed a pH probe for reflux before it could even really begin - I think 20 min into the test. A Nissan was planned but MRSA turned up in his blood test. It did not respond to the normal dose of Vancomyacin. He also had a ASD - going the good way - and the floor doctor was concerned the MRSA might be hiding in his heart. Finally, he cleared the MRSA and the fundiplication and G-tube surgeries were performed. Vanderbilt did a wonderful job coordinating all the specialists, listening to us, and training us. They sent us home to relax several times - and it was a time we could relax because they knew how to take care of him. He did pass a swallow study on the last day so we could bottle feed him.
The trip home with him was nerve wracking but when the medical equipment truck backed up and unloaded I really was afraid. We had night nursing for 3 months. He was unstable on the trach for 6 months. The local pediatrician was wonderful. The local hospital ( outside her nursery staff) was a nightmare on the 3 occasions we visited. One nurse tried to suction him to 18 and my husband had to physically stop her from doing it again ( he was normally suctioned to 6-8 on an 8 Fr) and she tried to not be gloved. A respiratory therapist suctioned his mouth and then was about to take the same catheter into his trach. I put my hand oved his trach and reminded her that was a sterile zone.Nicholas had 10 laser surgeriesat Vanderbilt in the next year to open his airway. He had his g-tube removed. The stoma didn't close completely so that was surgically closed later. Since his trach stoma tried to close anytime your change his trach, the g-tube stoma was ironic. We tried to decannulize him in late July but it didn't work and reconstructive surgery was scheduled for a month later. Two weeks later, on a routine suction on a car trip (Just off the interstate at a deserted exit area), his trach plugged. I bagged him, added saline, bagged again, he turned blue and went limp. I flagged a truck driver down, did an emergency trach change while he called 911, and waited for the ambulance. The local hospital was uncomfortable and called Vanderbilt - but not the ENT surgeon. I stayed with Nicholas since the nurses couldn't even get an IV in him so I couldn't fight with the physician to get him to call the surgeon. My husband had to drive down an hour to pick up the other 2 kids and bring me more equipment. Vanderbilt Emergency told them to airlift him and I was rattled because he turned blue and went limp so quickly with blood in his trach after the change. I couldn't risk the hour home with no facilities, so I agreed to the airlift. He was satting 100% and asleep on the helicopter ride. He was fine.
Two weeks later he had successful reconstructive surgery. He was sedated and paralyzed for 6 days and successfully extubated. A few months later he had another scope with an adenoidectomy and his g-tube stoma was closed. Surprisingly, the adeniodectomy made the most difference in his sleep. Even after the recontruction, when I knew he was oxygenating well during the day, he would fight for breathe at night. After the adenoidectomy, everyone in the house checked on him to make sure he was still breathing. We have now officially cleared the surgeon. Nicholas is a sweet headstrong non-stop 3 yr old who never stops talking.
History
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- Member for
- 3 years 19 weeks
Location
- Country
- United States
- State/Province
- Tennessee
