It is freaking hot out right now. ick. No breeze. what is up with that. Water give me Water. I miss having the river just down the street. I'm sorry but the Salt River just doesn't compare to the Comal or Guadalupe.
Well I am going to be doing the blog a thon this year. Hopefully you will all donate a couple of dollars. You should see a link up soon with information on when and how to donate. Please don't send the money to me. I'll set things up as soon as possible for that.
If you want to know why this is so important to me just read this Christmas 2000 blog entry. I owe Phoenix Children's Hospital my sons life. I can never repay them for that. What they did will always be on my mind.
5 years ago on Dec th 19th, my life probably changed forever. In the following 2 weeks I would be witness to 3 beautiful children die, hear the anguish of a mother who had struggled for 2 years to keep her child healthy only to see him slip away on christmas eve. How could a God who is supposed to be so loving be so cruel.
Let me start at the beginning it started around Halloween I guess i Just made exscuses for it he was young his shoes where to big I dont konw he was just clumsy. My 18 month old Child started stumbling when he walked was having trouble feeding himself and after starting to use the potty was having trouble using it again. But this all was ignored because he looked so healthy. As we where walking to have our thanksgiving photos of the kids taken I noticed him holding his hand funny like people with nerve problems often do in what Tal affectionatly calls the "chest slap or retard position" I mentioned it in passing to him but we both let it slide. He passed his physical and took him shots in early december the doctor didnt say a thing. then ame the coffing at first not so bad then worse and worse. I took him to the doctor they told me to run a vaporizor and all the other things doctors tell you he had RSV. Sounds easy enough well it wasnt He started having seizure on the 17th at first maybe once or twice everyt 12 hours by the 18th midday he was having them one every 3 hours. the Doctors having never seen him seize thought i was insane. In fact Tal took him to the doctor that morning and was there for 2 hours no siezure the minute he got into the car and started driving away boom he has a siezure. So we kept trying to keep his fever down help him breath and all the things you are supposed to do for your children when they are sick. by the evening of the 19th I had had enough 3 days with little or no sleep and worrying that at any minute he would stop breathing drove me to the hospital emergency room no matter what the doctors told me and I was not leaving till they helped him. So as we sat in the emergency room he had several seizures but none while a medical personal was there. They wrote in the medical records (i read them sometime later that year) that it was the mother is hysterical seeing sysmptoms which where not there.SO they where going to give him discharge papers and I am now crying frustrated begging them to transfer him to childrens hospital for tests they refused. The tech walks in with the discharge paper for me to sign and as if on cue he begins to have one of the largest seizures he had had to date. the tech freaks and runs out screaming for the doctor. Needless to say an ambulance was there in less then 5 minutes and he was admitted to childrens in less then 15.
Once there I was greated by the first set of people who didnt think I was insane. they calmed me down and promised that they would take good care of him. They put him in a semiprivate room and pumped him full of drugs to stop the seizures nothing was working. This went on for days trying new drugs and them not working and all the while he was getting weaker and weaker haing increasing diffiulites breathing. His tiny little chest sinking evertime he tried to breath.Christmas eve came and they moved him into a room directly across from the icu nurses station so they could respond quicker. The little boy in his room with him was fighting the same problem. they where about the same age. His mother and I introduced ourselves. We hugged each other telling each other things are going to be ok even though we both where losing hope fast. The doctors came in to check on them and ended up putting a trach tube in the other little boy as his mother looked on in horror. My sons doctor turned to me and said if he doesnt start getting more oxygen into his body we are going to have to do the same thing. I noticed you where Catholic I think you should call your priest and have him baptised if he is not baptised and have them adminster last rights. I refused saying nothing to my family who was struggling to keep the family together at home with 2 small children wondering where mom and baby where and why Christmas wasnt comming tonight. I just prayed and prayed and cried harder then I have ever cried before.
about midnight the alarms started going off the little boy next to us had stopped breathing and shortly there after his heart quit. His mother began to scream a scream I dont think I will ever forget as long as I live. It was like those wailing sounds you hear at indian funerals but 100 times worse. they rushed in and did everything to this poor child but he was gone. His mother just stood there when it was all over clutching his lifeless tubed body cursing god and me for my son being alive. (she came back and apoligized I told her i understood I prolly would have done the same thing) I sat there anxously watching my son labor to breath counting every heartbeat hearing ever skip, praying the alarm would not go off.
Then a miracle happened, the siezures started to slow he woke up for the first time in 5 days and Christmas morning found my son on the upside. The doctors came in and told me not to get too excited these things tend to rebound. So i waited.
January 2nd they let me take him out of the icu and home with me. They told me he had a liesion in his right frontal lobe. they told me it could be genetic, it could be a tumor, it could be an anuerysm on surgery could tell but the odds of leaving it or performing surgery on it where bad so we elected to wait and see.
that week I brought home a 19 month old child who could not eat without choking, who couldnt even hold his head up by himself. The doctors told me as I left to be prepared to care for him for life. That he may never be able to walk or do anything for himself. I just smiled and walked out of there with my baby.
Its five years later and he is a happy healthy 6.5 year old. He rides a bike, tries to read, and does all of the other things the children in his 1st grade class do. Admittedly he is still a little bit slower and a little bit clumsier then his playmates but he can do almost everything they can. I know in my heart that though his memory may never be good and though his speech my have problems when he is sick he will live a happy normal life.
ps little note he is now 9 and a very happy, active and smart 3rd grader. He still has a little problem with memory and reading but his Math is above grade level and his speaking vocabulary is awsome. He is my poster child for reading to your child everday and never giving up no matter what anyone says to you. Children can overcome anything if you give them half a chance and as much love as you can.
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