Your Prayers Worked :-)

Now Charlie did have a good night but I'd like to know who of you out there prayed that they would keep him loaded/snowed, because it worked? We were very fortunate to have a super RN (Sue) last night and was very proactive in medicating the storm at the earliest signs so that he wouldn't get so wound up. This morning has been pretty mellow, he had one "Mini" storm but it only lasted about 20 min. Angel and I had our 1st "Care Conference" w/ the PICU staff. We had kind of prepared ourselves to hear the absolute worst case information. My dear sweet bride in true Wife/Mom list making fashion had a litany of questions that would make a Mensa cringe and for the first time I was grateful for it. Generally I abhor anything that even looks like a list because the way I see it a list from the wife isn't a group of things that could be accomplished it's merely a plethora of ways that you can fail to meet expectations because you didn't do it in the order/way that you should have. BUT... in this case her list of questions had the Doc's spewing way more info and answers than we thought we'd get. Here's the nitty gritty. GOOD: 1. His survival rate at this point is very high. 2. They also expect these storms to subside w/ time. 3. His brain stem appears, from his last MRI, to be in good shape. 4. No recent seizures. 5. His brain is only 9 mo. old and still has some maturing to do. 6. Lastly he's not nearly as rigid and the Rx's seem to be managing things. BAD: 1. He's had his egg scrambled pretty good and he isn't improving neurologically and isn't alert. That is the Neurologist's biggest concern. 2. His healthy brain stem doesn't match his clinical picture. 3. His breathing is still pretty labored and no real cough or gag reflex and a tracheotomy is still on the table. 4. From his MRI it is most likely that his damage is in the areas of the brain that control motor functions, cognition, speech and the overall communication of both sides of the brain. 5. A "G" tube so that he can feed himself is in his near future. 6. Wheelchairs, walkers and Mini-vans are all strong possibilities. 7. He will be at increased risk for pneumonia and respiratory infections for the rest of his life. 8. There is a high likelihood that while he'll be able to understand things he won't be able to interact or express himself. 9. "We just don't know" and "Time will tell"
We will continue to hope and pray and we urge you to do the same. Any of you that have come to see Charlie know how hard he is fighting and that he's not going to give up and I'll be damned if I will.