Jonah
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Let me tell you Jonah's story. He was born on Nov. 25 2003. We knew that he had a chance of being born with Treachers because my husband has it and it runs in his family. Jonah was born on time and an easy birth. Jonah was born with a cleft lip also, because of his jaw being so small and cleft it took a little while for him to get the hang of taking a bottle, but he tried his hardest. We stayed an extra night so that the doctors and nurses were sure that he would eat good for me and to teach me CPR, because when they fed him he would get choked very easily (personally, I think they were feeding him too fast) but he never got choked for me. They also sent him home on an apnea monitor just as a precaution when he was sleeping.
We went home and had a good time with him feeding him and all the excitement of a new baby. We went to see a surgeon about his cleft lip when he was just 2 weeks old. We had to go to Birmingham the plastic surgeon and he knew more about Treachers then our pediatrician did. We were impressed with him but still wanted another opinion before going with Dr. Howard. Dr. Howard didn't want us seeing an ENT until he was about 6 months old which that didn't sound right either to us because we knew he was hearing because of his ears being closed he has no middle ear either, but his middle ear is normal.
Well, we went home for another week or so and then my mom came and got Jonah and me for Christmas since Christian my husband had to work till Christmas eve afternoon. Jonah did well traveling and we were up there for a week before Christmas, he was doing good everyone had to come out to see him. He handled being passed around really good. Christmas eve rolled around and we loaded up the car to go to grannies house for Christmas eve lunch (Christian still hadn't made it up yet) and Jonah was in his car seat crying and he took a breath and held it and didn't let go of it, he had stopped breathing. My mom pulled the car over and I started CPR on him right away, my sister was on the phone (thank God for cell phones) with 911 when an ambulance went by without it's sirens on and we were able to flag them down. They gave Jonah oxygen to try and get him breathing again and he had a very low pulse. We had to meet another ambulance that was more equipped and they rushed us to the hospital. It was the longest hour I have ever experienced in my entire life. They didn't come out and tell us anything about what was going on with him. The doctor finally came out and told us that they had revived him but it took 45 mins to do it, but he wasn't waking up or moving and the vent was breathing for him.
They finally let us back to see him after 2 hours of not seeing him. He looked so frail. He was sheet white no movement except a little seizure every once in awhile. They told us that the out look was not good, but they were going to fly him to Birmingham because they were better equipped to deal with cases like Jonah's then they were. We left Columbus GA around 8 p.m. after being at the hospital since about 1-2 p.m. I was able to fly with Jonah but they didn't have any room for anyone else. We got up there about 10 p.m. and Christian met us up there. The nurses got him settled in for the night and we finally got to spend some time with our little boy.
The next several days were touch and go, they did every test on him they could trying to figure out what caused the arrest. They never figured it out, the only thing that the doctors could come up with was that he got in a bad position in the car seat and cut his airway off. We were told not to expect much if he makes it, because he had gone so long without oxygen to the brain. We weren't expecting him to come off the vent. Well, after about 2 1/2 weeks Jonah started coming around a little. He ended up taking himself off the vent right after the first CT scan of his brain. He went 3 days with out the vent. The CT scan didn't show the damage the doctors were expecting. So they decided to do an MRI of his brain to see what that would show. At that time they put him back on the vent so they could suction him if he got choked during the MRI. The next day he spent the tube out again and went another 3 days without the vent but he started having labored breathing so we opted to put him back on the vent. I called the next morning after he had been put back on to see how he did through the night and the nurse said he was doing good, he slept good through the night no real changes. He still was only responding when he was touched. Christian and I went in to see Jonah and they had him tied to the bed and an iv in his head and the nurse came running over to explain what was going on, Jonah had in one motion pulled out his vent tube, i.v. and the feeding tube at one time. At that time they decided it was time to do something to help him. So he got a trach and a g-tube.
We stayed with him and learned how to take care of him and when we were ready and they felt that we could handle it they sent us home. January 29, 2004, Jonah came home with us for a second time. At that time we had gotten a new plastic surgeon (Dr. Grant) that we like. We of course got and ENT (Dr. Wooley) and Jonah now has a hearing aid too, General Surgeon for the g-tube (Dr. Harmon) and a neurologist (Dr. Dure). Since the arrest Jonah has vision problems (he is extremely far sided), developmental delays he doesn't have a gag reflex or swallow reflex. He is over a year behind kids his age. We have him in early intervention and have picked up physical, occupational, and speech therapists.
Since working with all of these special people Jonah is now tracking some toys up close, he is trying to roll over, trying to hold his head up, trying to sit up, trying to stand up, and moving his mouth more. He has some brain damage but the doctors said that by the time he's 3-5 that there is no reason for us not to believe that he'll be running around like a little boy should. He is scheduled for a jaw distraction surgery on April 15 we're hoping that this will open his airway enough so that we can get his trach out the end of this or the beginning of next year. He is making leaps and bounds that we never new he would be able to make. He is truly our little fighter.
