Julian Swinger
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Julian and his twin brother, Jaden, were born on January 25, 2002 at 34 weeks by c-section. Julian weighed 4 lbs and was 15 1/2 in. Although Julian was small, he went to the neonatal unit for only an hour for observation. He then joined his brother in the regular nursery. Both boys came home with mom 3 days later. Initially, Julian was healthy and thriving.
Sometime during his first year, Julian was labeled "failure to thrive" because he wasn't eating and growing like his brother. My biggest complaint was that he was constantly congested. We saw all kinds of pediatric specialists -- GI, ENT, an allergist, a geneticist. Tests always came back negative. The only thing they could find was that he had laryngomalacia. He sat up at 8 months, but by 10 months he still was crawling so I started physical therapy. He started doing a modified army crawl around 13 months.
Around that same time, April 2003, he was scheduled for some more testing at the hospital: an MRI to look at his pituitary gland and a CT scan to look at his sinuses. To go into these machines he had to be sedated. While sedated in the MRI machine, the doctor suddenly pulled him out because his oxygen level had dropped. They kicked me out of the room for what seemed like forever as they bagged him. A few minutes later they came out the room, and said Julian was fine. Fine enough to go ahead and do the CT scan. After the CT scan they observed him for about 30 minutes, gave him water to drink, and sent us home. The next day I was very concerned. Julian was very lethargic. He would sit up, but wouldn't play. When I talked to him he turned the other way. I called the hospital to see if it could be from the medication they gave him. He had never been sedated before. They told me that it shouldn't be and that I should take him to the doctor or ER. We had an appointment that day with the allergist to go over the CT scan results so I took Julian to him. I told him all that had happened and he acted as if I were being overprotective and crazy. He actually said to me, "Is this your first child?" Which he wasn't...Julian not only has a twin brother, but another brother who is 15 1/2 months older than he is. But, feeling somewhat silly I took Julian home. Julian was drinking a lot, but was still lethargic and not himself.
Anyway...the first thing the next morning I took Julian to his pediatrician's office for a sick visit. By then I was bawling because I knew something was wrong. I told the doctor my story and he put the pulse ox monitor on Julian. It read 68. The doctor called an ambulance, and off to the hospital we went. As soon as oxygen was put on him, his oxygen level went right up to 100. But those two days had caused pulmonary hypertension and the right side of his heart to be enlarged. When we got to the hospital we saw some specialists we had never seen before: heart and lungs.
We stayed in the PICU for a total of 8 days. The pulmonologist did a bronch and found that Julian's vocal cords did not sense well. The ENT scoped him and found that, while his laryngomalacia was improving, Julian had tracheomalacia. They decided Julian needed to have a tracheotomy. After the surgery I was heartbroken not to hear his cry or his little voice. After a few days they changed the trach and moved him to the pediatric ward. After almost 2 weeks in the hospital we came home.
Julian wasn't on oxygen during the day for very long. By August he was off O2 at night. By October he was walking and was released from physical therapy. Today he is running and talking around the trach. He and his brothers have learned some sign language. Julian says a lot of words...some easier to understand than others. He doesn't speak nearly as well as his twin brother, but he understands everything we say. He wears the Passy-Muir valve for short periods of time, but he usually pulls it off. I also plug his trach for as long as he'll let me. He can breath fine through his mouth and nose while plugged, but he likes to pull it out.
On June 1, 2004 after having the trach for almost 14 months, his ENT scoped him and found that his vocal cords are now sensing fine, but he still has some tracheomalacia. While sedated, they removed the trach and covered the hole for a few minutes. Julian's trachea was still collapsing. I was told that the trachea is made of cartilage and because Julian is still little (He's 25 lbs and 32 1/2 in at almost 2 1/2 years old) the cartilage hasn't fully hardened yet. If they removed the tracheostomy tube, his airway would collapse and he would struggle to breathe. Soooo....he still has some growing to do. Our ENT said that 3 years and 30lbs are usually the magic numbers. We'll see!
For now, we are trying to get Julian to eat and grow. We are starting up speech therapy again and counting the days until decannulation.
Update, July 2004: We took a family trip to Breckenridge, Colorado to visit grandparents. Driving 11 hours with two 2 1/2 year olds and a 3 3/4 year old was actually not so bad. The altitude is very high there so we had oxygen concentrater delivered for Julian to use when sleeping. He adjusted really well during the day. Julian had a blast playing outside with his brothers, Jaden and Quinn, and dressing up like cowboys. We all enjoyed the cool weather...a nice change from 105 degrees in Las Vegas!
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