DDA, I could use some serious prayers for Rees (and me) please. Here's some background so you'll understand the seriousness of this issue.
When Rees was born, he was our healthiest until day 2 when he crashed. He was so sick, and the doctor's didn't know if he would make it or not. They could not get him off the ventilator, and it was extremely touch and go. He had horrible time feeding, and was diagnosed with severe reflux (GERD). He literally spent weeks at a time in the hospital, with one stay 45 days just before his first b'day. He vomited up to 40 times per day, was in agony, on all types meds, had so many nasty procedures done it breaks my heart, was on feeding tubes... oh, it was just horrible. We would call the GI doctors at 2am with him screaming in agony, refusing to eat at all, arching his back. We'd end up in the ER, get admitted again, go to the PICU. It was a vicious cycle and some very dark days. Finally at age 17 months he had a major surgery called a Nissen Fundoplication. A Fundo is a drastic and last resort surgery for these kids. They literally go in and wrap the child's stomach around their esophagus to physically prevent any acid for regurgitating out of the stomach. It has lots of side effects, and the kids are unable burp or vomit afterwards, so you must be very careful with stomach flu, food poisoning, swallowing pennies (ok, that is funny). It was MAJOR surgery. He was in the hospital for 10 days, has an incision from his breast bone past his belly button (looks like open heart surgery). Up to that surgery Rees was Failure to Thrive and only weighed 15 pounds. The reflux and long hospital stays and pain are a major reason he is developmentally delayed.
Well, 3 weeks ago Rees started refluxing again. He would wake us up at night saying his tummy hurt and point to his chest. He's back on all his meds, but they aren't helping. Tonight, it was absolutely horrible. He was retching, sobbing, screaming!!!!!!!! in pain for over an hour, arching his back, thrashing around in my arms because it hurt so bad. We finally got some meds to stay down. John and I are both panicked and have been sobbing all night. It has brought us back to the worst time in our lives. It was pure h*** and I can't believe it's starting again. So, it looks as if we will be going to the hospital for an emergency Upper GI in the next few days and possibly scheduling him for major surgery to have the Fundo repaired.
Please pray for my Rees. I can't believe this is happening to my baby again. I am absolutely devastated.
Oh, and John looked at me when we finally got Rees to bed tonight and said, "forget going back to school or work. Rees and the kids need you much more than we need money. God has you at home for a reason, and that's where you're staying." Thank goodness I have a fantastic husband who puts the kids above anything else. Needless to say, the whole teaching school thing is on hold for a long while. Rees just is too medically fragile for me to be working full-time and not have the flexibility to be with him.
Can you tell I'm excited? How am I going to get to sleep tonight?
. Let me know what you would like me to do.
