Brody has been at St Chris since Monday evening when I made the decision that he can not keep working as hard as he is. Every time he cried he turned blue. His oxygen requirement increased and his feedings were a nightmare. The boy who loved to eat by bottle was now in terrible pain when fed both by mouth or through his gtube. We fumbled around trying to change formulas to reduce gas but finally after having an xray taken at a different angle, it was discovered that he has large intestine in his chest wall. After working so hard to breathe past his airway obstruction for so long he actually sucked bowel up under his ribcage pushing on the lungs and making it impossible to eat. He is at the right place now. Our docs at St Chris have finally given us answers to Brody's chronic problems and the relief that he needs is finally happening. He will have surgery Friday to reduce the hernia and to have a trach placed. We were so scared of this for so long but it is what he truly has needed for a long time now. I pray that no other issues have been caused by such prolonged high CO2 levels as we have learned that babies with chronic lung disease like Brody will have elevated levels, but having this condition past 3 months of age can be detrimental to the brain and strain on the heart. We are scared that maybe surgical intervention should have happened sooner for him.
I used to snicker at the 'mom blogs' of mothers talking about what a relief it was for their kid to have a trach and g-tube. I thought to myself, how could looking at your beautiful baby with a hole in his throat every day be a relief??? I now know what all of those moms were talking about. Brody will be able to breathe easy for the first time in his life. He will hopefully be entirely off oxygen and off of the monitors. He will feel better, have more energy, gain weight easier and be able to leave the confines of a 7 foot space. He will be able to go to the park, the beach, or even just get to his doctor's appointments with ease. I will be able to carry him in his Baby Bjorn and take him from room to room in my house like a normal baby. Sure, there will be a lot to learn in terms of caring for his new bionic throat but we and his doctors strongly believe that this baby will immediately thrive and grow and develop the way he should and the hope is to have all of this junk out in a year.
Of course I have fears of social situations, public places, people looking at him, etc. I saw a little girl in our pediatricians office with one. She was 1 year old and having hers closed up. She was adorable, bubbly, developing normally and most importantly happy. When I think about Chloe it makes me smile because she proved all of my misconceptions about trachs wrong. Brody will be that kid too. That gorgeous child that brings light to everyone he meets. Our little Mr. Smarty Pants will continue to observe and learn without limits. The trach may be difficult in the short term but it is his opportunity to live, play with his brother, go to school, make me a nervous wreck when I hand over the car keys at 16 and tell his mom to stop kissing him when I'm about to drop him off at Penn State (sorry Brett...or Miami).
Please don't be scared for us or of him. This is a good thing for Brody and for our family.
Interesting trach factoid: Catherine Zeta Jones had a trach as a kid for a respiratory infection. Often wears a necklace to cover her scar.
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