Hi, Just read your mails and I am so glad you have answers and the right treatments. This baby will be fine now and lead a good life thanks to your insistance on the right moves. I will pray for you and baby. God Bless. Sandy
this has ben very stressful. as of march 5th he was medavac to childrens hospital in atlanta. they found that he has a whole the size of a pin point in his airway. finally some answers. he had a procedure today and is still on hte vent but they feel this is the answer to our prayers. at the other hospital he ended up having the fundo and a g tube after no test were done to support it. so now the drs at egleston feel it may have not helped doing that procedure he may have not needed it at all. i just dont understand how top drs at mcg missed that his vocal cords were not moving and this strider he has had was getting worse. it took us to get him out of there. thank god for the military. we quickly got our ped dr to get a referral and he was sent away that night.
he also has cerebral palsey. dx yesterday. i feel they stoled my sons life playing god not treating the over all picture. his breathing from day one has been the trouble. then every new dr every week we get changed things. im so blessed that we are at the atlanta hospital. coimmunication is the key and they all listen and here your thoughts and break it down to where you understand whats going on. he has another 10 days before we see if this procedure works. keep praying.
I am so very sorry that you are going through this. I can't help you with your situation. I just have a couple of quesstions Why did htis new doctor feel the need to change everything. did he explain it to you? Also when your little one had the eeg, how often are htey doing one. is he always hooked up to ine. the reason I am asking is that some seizures do not show on an eeg unless you are experiencing one right then and there. Are they doing anything for his apnea, probablly not really since he is on a vent.
I will pray that things will work out an dhtat you get some answers and he will be okay when they extubate him.
has he been seen by aneurologist?
Good luck and I really hope things work out. Sorry I can't help you
Michelle