Sophia Elizabeth Gibson
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Born 9-24-00 at 25 weeks gestation, the second of twins (brother James was 1b., 13 oz and is fine) weighing 1 lb., 10 oz. ROP, MRSA, BPD, tried to extubate nine times and was trached 1-27-01. Failure to thrive five weeks after coming home, but we avoided a g-tube and she eats like crazy now. Her original diagnosis at the time of the trach surgery was tracheal malacia, but it has since been determined that she also has severe subglottic stenosis. She is going to be scheduled for laryngotracheal reconstruction surgery October, 2003 but will most likely need another surgery Spring, 2004 due to the severity of the scar tissue.
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Update, October 2003: Hi everyone! It’s been a long road for our little Sophie, but we have FINALLY found the team that will perform her tracheal reconstruction surgery. Dr. Robin Cotton and his team at Cincinnati Children’s Hospital perform about 150-160 tracheal reconstruction surgeries per year, as opposed to other sites, including U of M, which perform only 10-12 per year.
After three days of testing this week, they determined that Sophie will require what we had hoped – an anterior graft, which means they will take rib tissue and graft it to the front of her trachea to open it up. She will have the trach tube removed during surgery and be placed on a ventilator for about three days to heal. After the three days, she’ll be taken back to the OR to see how everything is healing. If all is well, she’ll go back to the ICU and have the ventilator removed the next day. She’ll have to stay in the hospital for another 10 days or so to be evaluated and then they will scope her one more time to make sure everything is healing properly. If so, she can go home and is DONE with the trach! This was the BEST possible scenario for surgery and we are thrilled!
After speaking with the very knowledgeable pulmonologist, we determined it would be in Sophie’s best interest to wait until after RSV season to have the surgery. Any upper respiratory illness she could obtain during the winter could keep her in the hospital for an extended period of time and we don’t want to put her through that. So the plan now is to wait until the spring when things are safer, our new baby is here and things for our family are settling down a bit. We’ll have the winter to make plans to move all of us down there for the 2-1/2 to 3 weeks she’ll be in the hospital and until then, things will go as “normal.” The other positive point here is that Sophie is beginning to bloom with her speech, saying 4 word sentences now, and we’d like to see that progress for the next six months until surgery.
We hope this message finds all of you and your families well.
Update June 2004: Wednesday, May 19, 2004 Sophia went to Cincinnati Children’s Hospital and had an LTP, both anterior and posterior grafts and was decannulated. She was intubated for six days, but when she was extubated, had absolutely no problems breathing on her own. May 30, Sophia was released from the hospital and after a bronchoscopy on June 2, we were allowed to return home. One of the grafts was not completely healed over, but they were overall very pleased with her recovery. We return on June 25 for a follow-up
bronch.
I have to say that the most difficult part was the withdrawal from morphine which took a good six days, but it was all so worth it. If anyone is looking into going to Cincinnati, I have information on the great place that we stayed that was pretty affordable and perfect for our family situation (two grandparents, my husband and I and a three-year-old and three-month-old in addition to Sophia).
Sophia no longer requires oxygen when she sleeps and is enjoying swimming and playing in a sand box for the first time! Dr. Cotton and his team have changed all of our lives and we are truly blessed.
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Please feel free to email me anytime as I have a lot of information about our experience but didn’t want to make this too wordy.
Rene Gibson
(and Jim, James, Sophia & Ian too)
