Some things just can't be fixed no matter how much we want them to.
When something breaks our first instinct is to fix it whether it be the kitchen sink or the car a broken plate a relationship we WANT TO FIX IT. It's human nature to want to fix things when they're broken. Now when our children are sick that is a whole other kind of broken that no one ever wants to face but some us us have to. When you find out your child is sick yet again you feel it in you to fix him/her no matter the cost, you would give your soul if it was an option just to fix what ever is wrong with your precious innocent child. Well here we are at the non fixing point.Yes it's true some things just can't be fixed not even by medicine and brillant doctors. Its just the way it is and all you can do is keep going move forward and keep going because what other choice do you really have?
What do you do when you have tried all your options and and done all you could do. You've had your child poked and prodded tested over and over. Countless arguments with your spouse about enough being enough and if we should just give up or stay to figure what is wrong. So we stay at Packard it took about a week lot's of test invasive test,procedures and lots of brilliant Doctors working to find out the problem and FINALLY a the discovery was made.
A lung profusion scan along with nuclear medicine shows that Cole has several tiny AVM's in his lungs and abdomen. He was sent home on 24/7 oxygen at 2 liters as this helps his o2 levels so much and puts him from low 60's to 98. Yeah its hard but no more baby blue!!! So what I trip on a 50 foot cord every now and then and we haven't figured out how to go to the park yet but we will get there. The part that hurts the most was our 1st pulmonary appointment.
I sat in a room with Cole along with his 2ft tall o2 tank and stroller must of been a sight lol anyways Dr. C came in and said she could see the AVM's and is 100% certain that he does have HHT AVM's that will spread over time because I genetically gave this to him. I'm learning to deal with that and it will be a different blog post. Moving on I said good we know where the AVM's are located when are we fixing him with a smile, she looked at me and said " we aren't" just as simple as that and then said sorry I looked at her and all I could say is okay then what do we do? She said let him experience life be a boy and wear his oxygen as much as he will wear it since it helps him he will be smaller than other children and this is a disease and it will spread and we will do scans yearly if the AVM's ever are big enough to fix we will fix them till now enjoy your baby love him and don't limit him. My face was still in shock at the fact that my baby could not be fixed that there is nothing but oxygen that could be given. He is not in pain he is happy and with the oxygen he grows and develops we see a change in his daily.
Cole is such a fighter he is so mean lol well tough, he can be mean at times and so so loving he loves babies just loves them and boy does he love musicals he loves music and LOVES to sing. He is so full of spunk but I think without that fight that is what keeps him going we have so much still ahead of his his journey has just began and to think this all started with his heart defect. By the way his heart is look amazing pumping great and scar tissue growing just as is should. Cole will be 2 years old May 17th he is getting so big we all love him just the way he is and couldn't imagine our lives without our miracle boy.
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| My Crabby Patty Cole he was Mr. Happy today :) |
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| Cole and Brother Gavin |
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| 1st time out on portable oxygen we had lunch he was happy to be out |
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| Easter Day 2015 all dressed up |
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| Cole didn't let anything stop him from finding all the hidden eggs at Aunt Nita's and Unlce Ralphs |
