Isaiah Thomas Armstrong Voss
 |
Isaiah Thomas Armstrong Voss was born to us on Jan. 18, 2002, a full six weeks early. He weighed in at 4lbs.8oz. and after four days of weight gain they checked us out of the hospital. Since it was along the road home, they decided to have us stop in at Children's Memorial Hospital (in Chicago) to have a heart murmur checked out, but Isaiah looked like a healthy baby and they assured us it was a common newborn thing to have. After the echo at Children's we were checked into the NICU for a week of observation, having learned that Isaiah has dextrocardia, double outlet right ventricle, complete av canal defect and asplenia, and would need three heart surgeries.
After he showed that he could gain weight again, we got to bring Isaiah home for a wonderful six week stay, before he checked back in for his first heart surgery March 12th. He had a PA band placed on his right ventricle and the surgery/recovery went well. It was extubation that proved problematic. They tried twice to extubate him and he failed. They thought the second time was due to the RSV he had contracted. After the infection, they tried again, and for a few weeks he did okay on only a C-pap/nasal prongs. He went into respiratory distress early one morning and ended up intubated again. It was then that they did a bronchoscopy and realized he has mild tracheal malacia and severe right bronchial malacia, 80-85% closed.
Around the same time they started talking about doing a tracheostomy, they discovered Isaiah has malrotation (intestinal twisting problems) and that he would need to be operated on for that as well. He had his trach put in and a week and a half later had his malrotation surgery done. Since then, he has had RSV again, along with pneumonia and psudomonas. He also has medically-resistant staph and is in permanent isolation in the hospital. He is making his third attempt on the home vent. He failed the first two times because he started having severe desaturation episodes where his right lung collapses and he refuses to open up. They're now doing neurological testing because they think his desats may have caused some damage to his vision. With the asplenia, he seems particularly prone to infections, and has had several pic lines replaced due to severe blood infections, one because he had a blood transfusion reaction. He has an NJ tube now because he has severe reflux, but we're hoping to try a bottle soon. We've been in the PICU almost 4 months now and it's almost time for Isaiah's first open heart surgery. They've told us it may be 2 to 6 years with the trach/ventilator and that he may have to live in the PICU until he outgrows his severe desats/lung collapse.
We marvel at the joy Isaiah is able to bring us amongst all his trials and can't wait to bring him home. He just turned 5 months old, and he loves to sit up and sleep on his belly, and be tickled. I never thought he would do those things with the trach, but seeing is believing.
In order to keep people updated on Isaiah we have a website, jjj.vosspotts.org. I would love to get email from anyone who has also had to stay in the hospital long-term with their child, or who has had a similar experience.
Jennifer Amrstrong idaisha@hotmail.com
