Saturday, October 6, 2012

Day 6 - October is Down Syndrome Awareness Month!

Day 6:  Down Syndrome Awareness Month! 

I can't sit in October and not run through our life a year ago.  October 1st we were home from a ten day stint with Bradley in the PICU in San Diego.  He'd finally had the Fundoplication surgery complete with the Pyloroplasty and insertion of the g-tube.  In a matter of hours our world turned upside down.  In May of 2011, Bradley was at the hospital awaiting this surgery and his Peds GI put a stop to it...at the end of our choices we were frightened and yet relieved, the g-tube was pretty scary stuff.  But we were left with this sinking realization that we were being sent home because our baby was too sick for surgery.  We tried two more medications, prayed and prayed and all we could show as success was that he didn't get Croup over the summer.  The good thing about Croup was the steroid shot, the bad thing about the steroid shot was that it masked his true weight loss.  By August we couldn't hide from the truth and surgery was planned for September.  Accepting surgery was not the most difficult part of that August...letting go was. 

First, it was necessary to let go of the huge feeling of failure that comes with the words "your son is no longer thriving." 

Second, with the g-tube Bradley would need a weight check every couple of weeks with the pediatrician.  I had to accept that our move from San Diego to Camarillo was going to force us to choose a new pediatrician - I wouldn't be getting enough sleep to survive the endless driving hours and attached to a tube was not going to make a comfortable ride for Bradley.  Tapped out financially, and gas prices going up, there wasn't even an option anymore.  I cried (still do thinking about it, tears me up to even write about it today) the last day that I watched my son's amazing pediatrician say good-bye to him and fill my head with the most important pieces of advice that he could give me to sustain us over the next steps in our life with Bradley.  He told me: "You've tried everything, and you've gone as far as you can go without this surgery.  You've been going along and waiting for the other shoe to drop...it's dropping."  He put his gentle hands on my son's head as he always did, and stared into his eyes and reminded me: "He is going to amaze you, read to him and expect greatness."  I wanted to tell him how much we loved him as the kids' pediatrician, how much his guidance was the anchor that had kept us afloat since our return from Japan.  Instead I laid my head against the back of Bradley's and cried.  Because he is an incredible person and a phenomenal pediatrician: he hugged me good-bye, and then kissed my son.   

There was more things to let go of - the fear of the tube, the fear of the surgery....we still had the fears and they dominated our minds, but we had to let these things happen to our son.  We had to let go of this belief that we might have some control.  We didn't.  We had to stop worrying about the extra chromosome...it was time to worry just about the baby and if he would be here tomorrow. 

He came home on a tube, we let go of the doctors in San Diego and found a pediatrician here, and a Peds GI in Santa Barbara.  We thought we were set, that we were on the way up - but we had yet to hit the bottom.  We did that on December 31st.  He had a hernia going up into his chest, the pain was incredible and he couldn't eat anymore, even with the tube.  He couldn't pick his head up because his Glucose level had dropped so low.   He would have surgery on the 5th of January   (we had to wait for the surgeon to return from his holiday) that would fix the the hernia, undo then re-wrap his esophagus, and he was able to come home on his 2nd birthday.  We thought we were on our way back up but we still weren't...he became intolerant to his formula and started dumping it; it ran through his system so fast it was just acid coming out.

I remember on the worst night, I was sitting in the rocking chair holding him in my arms and rocking him.  After all we had been through, after everything, this was my moment when I could taste my fear, I looked at Eric and I asked him, "Are we going to lose him?"  And there was nothing to say, all we could do was wait and pray.   

Trial by fire, we learned he wasn't allergic to soy and milk (either anymore or never was we aren't sure), because he could tolerate this last choice, and he started to keep his food in him, and after a few hours then days then weeks, he started to gain weight.  And I started to breathe again.  I think the extra chromosome gives him extra strength that allows him to go through so much and keep smiling like he does.  My son is always smiling, his anger and frustration is easily turned to joy or laughter if someone is quick enough and keen enough to turn the tide.  He's just THAT incredible.  Love him?  Yes, with every breath I'm given. 





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