Monday, November 15, 2004
AND WE HAVE POOPY PANTS!!!
Johnny Camden pooped TWICE since I posted my prayer request for his intestine surgery. This means that the surgery worked and he can now pass motions. I can really tell when people start praying and sending positive thoughts for specifics, because that little man let some poopies loose at about midnight the night I emailed about that next goal. Then he did another one later that morning.
So heres our news for today!
We got to hold him twice!
Johnnys off the bilirubin lights as of 6pm tonight. They will test his bilirubin levels in the morning and see if hes holding steady and able to continue without the lights.
He got to wear real baby clothes … until now hes been either naked under the lights, or with just a nappy. He is wearing the outfit Myla picked for his “going home” outfit and were going to pack a few extra things just in case he needs changing while we are there or when were gone. Its a royal blue one piece with a truck and dog on it and a long sleeved undershirt, (no hats yet because of his head I.V.) but it sure is great to see him all in blue and dressed like a cutie pie! We werent allowed to dress him ourselves because of all the tubes, wires, and I.V.?s, but those are slowly coming off one by one as he improves. I have no doubt well get to that point soon.
I asked about Kangaroo Care and they said very soon, once hes stable off and off the lights.
His stomach fluid (they pump it from his stomach into a little collection container through a tube in his nose) is no longer greenish black in colour, but sort of reddish brown. We want it to be clear white before feeding him some breast milk/colostrum. So were focusing on that with prayer.
Once he comes home, we wont be able to take visitors for a while (besides family who are 100% healthy) because he needs to build up his immune system. With the winter coming, his doctor says no big outings like church or my group meetings (La Leche League and BirthNetwork) Ill attend those alone for a while and let John have a turn with him twice a month for a couple of hours. Small trips here and there are fine but we?ll probably just stay in so he can heal and recover. We havent discussed it too much yet, but once life settles down, John and I may rotate Sundays and go to church with Myla while the other stays home with Johnny. That way we can still get to Sunday School and church and be a part of the church family.
When he is between four and six months old, he will be having one more major surgery that we know of: open heart surgery. He has an atrioventicular canal defect (AV canal defect) and needs to have three areas of his heart operated on. 1. ASD=atrial septal defect ; 2. VSD=ventricular septal defect ; 3. left mitral valve repair. But they will be able to operate on his heart and repair it so even though its not good news, its not bad news either. They say one out of three kids with Down syndrome (DS) have heart problems, and there are two common problems. He has the worse of the two common heart problems. Too bad he wasnt one of the lucky ones with no problems, but Im glad that he is in good hands and that its something that can be repaired to the point where he can be a little boy doing little boy things without fear of heart issues. Lets just get him all fixed up within these next six months or so and get it over with so things can go smoothly from now on!
He will be able to come home after healing from his intestine surgery and before his heart surgery so thats good. It?s important that he just stays healthy and grows during that time which is why we?ll be keeping him away from germs or crowds. He can do some small Early Intervention things for a while before his next surgery. Early Intervention is birth to age three Physical Therapy, Occupational Therapy, and Speech Pathology where a therapist comes into the home and helps us set small goals for Johnny, like reaching for an object. They also teach me how to do certain “games” and exercises with him to help his development. Then with each new goal he achieves, we set new goals. Cant wait to start on that. It sounds fun!
His surgeon seems very confident in the outcome of his heart surgery. Once that is completed his healing/recovery should be complete. He should be able to start getting involved in lots of activities and even more intense Early Intervention programs to prepare him for school with the rest of the kids his age. Everyone is really pleased with the outcome of his intestinal surgery and now that they have run enough tests, they know what we are dealing with and where we are headed. That alone is a huge relief and just knowing what to expect is so wonderful … even if it is open heart surgery on an infant to fix three holes in his heart.
So thats todays news. We are really happy and feeling good about things now that we can hold him and he can see us (without those silly goggles on and being in that little bed under the lights). Its helping lift our spirits and now that we have so many tests done and goals to meet, its much easier to cope. We know hes going to live. And we know hes going to have a long and fulfilling life without a lot of setbacks. His doctor says he should be able to be in sports and run around like any other kid when hes that age. I was worried that his heart problems would mean Id have to keep him kind of tied down, but heck, if this kiddo wants to be in Special Olympics or on the local t-ball team he can! Im so glad we are getting all of his stuff done now, hopefully he wont remember any of it and he can just go about life strong and healthy.
Pastor David, John says to tell you that our trip to Holland is turning out to be a lot of fun and more of an adventure than Italy would have been anyway.