Our Little Sunshine's CDH Journey: Update from hospital

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, 8 May 2010

Update from hospital

ok so we went into hospital on wednesday (5th) for PH study, we got out on the thursday, a day early as the PH study was done at 3.30pm and they managed to squeeze Lewis into xray at 4.10pm for the contrast study, the results of the PH study take a few days so we don't know anything about that yet, but from the contrast study in xray it was clear to see how bad his reflux is, they hadn't even put like 10 mils of the stuff down his tube but it came straight back up, the doctor said she was very very surprised at just how quickly it came back up, so we were in and out of xray in like 5 minutes as they then had everything they needed.

We had requested a chat with Lewis's consultant and after waiting all day to see him as he was busy in and out of theatre, he came along to see us, he'd seen the results from xray and then went on to tell us Lewis needed 2 things done, 1st he needs the fundoplication operation, i really hoped he wouldn't need it, but after the consultant explained about Lewis's reflux being so bad and the consequences of the damage the acid does and will continue to do over time, we decided to go ahead with the fundoplication, it's the best thing for Lewis and for his insides and also for the future of his insides, the 2nd thing he said was he need to have the Gtube fitted, i was going to ask about this but he beat me to it, so i'm 'pleased' he knew he needed this too, i really think, well hope, that this is a way forward in our efforts to get Lewis eating, we know it'll still take time but least he won't have the NG tube irritating him all the time.

So that's about it, we just have to 'wait' on Lewis's turn coming round but least we know his name is on the list. I'm glad we didn't have to stay in 2 nights though, i hadn't slept much the night before we went in as Lewis was being bothered by congestion all night, then the night in the hospital was just awful, he was on a ward in a 6 bed bay and i slept on the cotside bed they have, on an open ward as wasn't allowed to shut the curtains round, so no privacy, and poor little kids and babies crying and screaming all night, Lewis slept soundly all night as usual lol.

3 comments:

Alex, Ingrid, Alina & Robbie Houchin said...: Poor you, you must be totally exhausted. So sorry to hear that Lewis needs the Gtube. We hope that everything goes well and you get to go home soon.
Lots of hugs from the UK.; 8 May 2010 at 21:24
Jaime's World said...: So sorry that Lewis has to endure more surgery! The good news is, once everything is said and done, you'll know that he will be getting the nutrition that he needs to grow!
Best wishes!
Love,
Sheryl; 10 May 2010 at 14:28
With Out My Punkin said...: I'm sorry to hear that Lewis will need the G tube, I was hoping that he wouldn't!; 10 May 2010 at 20:05