Our Little Sunshine's CDH Journey: Still stable

CDH

Congenital Diaphragmatic Hernia (CDH) is a birth defect that occurs when the diaphragm does not fully form, allowing organs to enter the chest cavity preventing lung growth. CDH strikes 1 in every 2500 babies. The cause is not known.

Every CDH baby is different, there is no way to predict the outcome of any patient. Some babies with no diaphragm and little lung growth have survived, while some babies with full lungs do not. These children are very different, requiring different treatments, and varying amounts of medical support.

50% of babies born with CDH do not survive and sometimes the remaining 50% have to overcome very difficult medical complications. Many CDH babies have minor lasting health problems such as feeding aversions, asthma, scoliosis, or short-term oxygen dependency. A small number have major lasting health problems such as ventilator dependency, brain damage, or hearing problems. Many patients have no long-lasting medical problems at all other than a scar from the CDH repair. CDH can occur alone or with other birth defects, and rarely, it occurs as part of a syndrome.

Saturday 21 November 2009

Still stable

Our sunshine warrior is still stable and doin well, night before last they stopped his parylitic n last night he was twitchin his fingers n tryin to move his head, for an hour and a half he went between half openin his eyes n fully openin them, so amazin to see him lookin at me, n he was squeezin his wee hand against ma finger loads, just great to see some life about him rather than bein flat with bein on parylitic x today he's still doin well, was sound asleep the whole time we were just there, just poppin bk over in a minute, daisy had to get to the parlour lol, he's on 1mil of milk an hour thru his ng tube and they're turnin his morphine down a touch today, hopin to be off the oscillator bk onto normal vent today as well but not sure if that's goin ahead as they've turned his pressure on the vent bk up a notch, but least it's still comin down as it goes from them turnin it down a couple, gettin a bad blood gas, n them turnin it bk up 1 so it's still gettin lower, slowly x we know how quick things could change but for now just tryin to 'enjoy' the fact he's doin well and is still stable, so proud of him he's doin so well, but ..so close but yet so far xx

2 comments:

mary said...: So pleased to hear your Sunshines doing so well.
Your doing a grand job little Lewis keep up the good work. xxxxx; 21 November 2009 at 16:24
Craig and Kristi Kuehl said...: He is doing such a great job! Just remember baby-steps in the right direction is all you need to get that wee-one home! We are continuing to pray for him and keep the updates coming!; 21 November 2009 at 16:49