U
usedtobeinca
Guest
Hi All!
Not sure where to begin, I suppose I'll start with an introduction and see where it goes. My wife and I have a 7 month old son diagnosed with cf at 3 days old. I know what you're talking about Daddy2Noah - so much to say! Here goes...
My wife and I both tested as positive trait carriers during her pregnancy, but forged ahead anyway - willing to take on whatever comes our way. We passed on the amnio due to the risks and the fact that the stats were still very much on our side. We did, however, have 2 targeted ultrasounds performed in the 3rd trimester showing a possible intestinal blockage the 1st time and nothing the 2nd time. With this factor in mind - we moved forward knowing our odds had shrunk considerably.
Our son Thomas was born on May 16th '06 with meconium ileus and peritonitis and was rushed into surgery at 10hrs old. At this point, a ped with our cf-team-to-be called the hospital room and said, "...he's going to be fine." May 16th was both the worst and best day of our lives. We spent the following 2 weeks in the NICU where the staff tried valiantly to fight skin breakdown and keep Thomas' ileosomy bag attached. They ultimately failed and Thomas' surgeon was dissatisfied enough to pull Thomas from the care of that NICU and hospital and transfer him to a different facility as Thomas' primary issue was ostomy care rather than the NICU norm. Another 3 weeks at the new hospital saw the skin around the ostomy regrown, ileostomy bags lasting for 24 hours each and Thomas gaining weight marvelously.
He finally came home on June 26th with a horrifying routine of all the cf meds plus ileostomy bag changes, ileostomy decompressions by catheter, fecal 'redistribution' and an NG tube - but less than a week later was back in the hospital due to a possible blockage and collaple of the ileostomy + dehydration. After another week in the hospital, Thomas was stabilized, eating a gainging weight well, and sent home. THe massive routing continued until August when his re-connect surgery was finally performed. Another 5 hospital days and he was sent home.
As of his last cf clinic appointment, Thomas weighed 18lbs, 4oz and was deemed by his cf docs as indistinguishable from any other normal infant his age.
Thomas' routine now consists of 4 CPTs w/albut (2 w/pulmozyme) [he has a cold], daily dose of ADEKs, prilosec 2xdaily, and Vit K every other day (plus antibiotic and steroid doses for the cold). Oops - left out 3.5 creon capsules per feedng. He's crawling and chatting it up with dadada, mamama, bababa, etc - and is overall a TON of fun! Thomas' comback has been remarkable and he is without a doubt the light of our lives. Welcome to parenthood!
So fittingly, now that the pressure is off and we no longer have to be "machines" as we were described all summer by hospital staff, all the emotion is flooding back and we are currently seeking new ways of dealing with it - like joining this forum
Any ideas on how to get through the "coming down" stage?
I think this is a good start on the healing - feels good to share our story with the world. I look forward to being a part of the cf community.
-Jason
Not sure where to begin, I suppose I'll start with an introduction and see where it goes. My wife and I have a 7 month old son diagnosed with cf at 3 days old. I know what you're talking about Daddy2Noah - so much to say! Here goes...
My wife and I both tested as positive trait carriers during her pregnancy, but forged ahead anyway - willing to take on whatever comes our way. We passed on the amnio due to the risks and the fact that the stats were still very much on our side. We did, however, have 2 targeted ultrasounds performed in the 3rd trimester showing a possible intestinal blockage the 1st time and nothing the 2nd time. With this factor in mind - we moved forward knowing our odds had shrunk considerably.
Our son Thomas was born on May 16th '06 with meconium ileus and peritonitis and was rushed into surgery at 10hrs old. At this point, a ped with our cf-team-to-be called the hospital room and said, "...he's going to be fine." May 16th was both the worst and best day of our lives. We spent the following 2 weeks in the NICU where the staff tried valiantly to fight skin breakdown and keep Thomas' ileosomy bag attached. They ultimately failed and Thomas' surgeon was dissatisfied enough to pull Thomas from the care of that NICU and hospital and transfer him to a different facility as Thomas' primary issue was ostomy care rather than the NICU norm. Another 3 weeks at the new hospital saw the skin around the ostomy regrown, ileostomy bags lasting for 24 hours each and Thomas gaining weight marvelously.
He finally came home on June 26th with a horrifying routine of all the cf meds plus ileostomy bag changes, ileostomy decompressions by catheter, fecal 'redistribution' and an NG tube - but less than a week later was back in the hospital due to a possible blockage and collaple of the ileostomy + dehydration. After another week in the hospital, Thomas was stabilized, eating a gainging weight well, and sent home. THe massive routing continued until August when his re-connect surgery was finally performed. Another 5 hospital days and he was sent home.
As of his last cf clinic appointment, Thomas weighed 18lbs, 4oz and was deemed by his cf docs as indistinguishable from any other normal infant his age.
Thomas' routine now consists of 4 CPTs w/albut (2 w/pulmozyme) [he has a cold], daily dose of ADEKs, prilosec 2xdaily, and Vit K every other day (plus antibiotic and steroid doses for the cold). Oops - left out 3.5 creon capsules per feedng. He's crawling and chatting it up with dadada, mamama, bababa, etc - and is overall a TON of fun! Thomas' comback has been remarkable and he is without a doubt the light of our lives. Welcome to parenthood!
So fittingly, now that the pressure is off and we no longer have to be "machines" as we were described all summer by hospital staff, all the emotion is flooding back and we are currently seeking new ways of dealing with it - like joining this forum
I think this is a good start on the healing - feels good to share our story with the world. I look forward to being a part of the cf community.
-Jason