Sunday, January 2, 2011

I wanna say, "I told you so!"

Since Noah's latest heart surgery, he has been on a sedation drug that he has not been on in over a year. The last time he was on this med, he had an adverse reaction to it. We told them that this med is not doing any good for him at all, but they were sure we were wrong. Last night was the worst. I had the doctor paged more 5 times within a couple hours to tell them this drug is making him worse. She kept telling me that she wanted his temp and heart rate to come down before they shut it off. Noah has not slept in 3 or more days. Last night he was crying tears he was so miserable. Finally I had had way more than enough and I told his nurse that I felt like I was going to explode if the doctor told me no one more time... so she went to find her but she was no where in sight so the nurse talked to the fellow. The follow comes in and I told him that I want it turned off and he said, "I agree, we are just going to turn it off. This isn't doing anything good for him." THANK YOU! And I will say, within 2 MINUTES Noah was calm and his crying had stopped! I wanted to tell the doctor that I told her so! I have yet to see her in the halls. I wonder if she will ever apologize for not listening. Anyway...

Since we have stopped Noah's feeds, his pancreatic enzymes have trended down. We are waiting on a set of labs before we try feeding him or get an MRI.
His white blood cell count is still going up and his fever curve is still high. He is on a couple antibiotics to get rid of the infection.
As far as respiratory, we have restarted his 3 one hour trials of CPAP support through the ventilator. Hopefully his airway will get stronger and we can finally plan of extubating him. I can't wait to hear his voice again. Yesterday, a friend of ours, who is also here with her one of her kids, stopped by our room to chat. She had her little boy with her and he is a month younger than Noah. She was playing with him and all of the sudden I heard him giggle. It was awesome because as soon as he giggled, my body felt like a jolt of electricity or something similar started in my heart and radiated out to my fingers and toes. It has been a while since I have hear a laughter like that. It gave me hope and made my heart warm up a bit. Something I REALLY needed yesterday! So, thank you Finn!

Right now, Noah is getting a bath. He is really relaxed and calm. It is a breath of fresh air to get a break from the misery we were all in.

4 comments:

Anonymous said...

GOOD FOR YOU DEB, SOMETIMES MORE OFTEN THAN NOT MOTHER KNOWS BEST WHEN IT COMES TO OUR CHILDREN JUST LIKE WHEN WE GET OLDER WE KNOW OUR OWN BODIES. BLESSING TO YOU GUYS AND PRAYERS COMING YOUR WAY ALWAYS. TODAY PASTOR SAM SPOKE OF SAYING YOU WILL PRAY FOR SOMEONE AND THEN THEY FORGET TO WELL, I HAVE DONE THAT BEFORE BUT I AM PROUD TO SAY THAT YOU GUYS ARE IN MY PRAYERS EVERYDAY AND HAVE BEEN FOR A LONG TIME

Anonymous said...

This had me in tears. So glad you got a shot of laughter medicine. Way to go for advocating for your child, great job!

-Shelly

Amy said...

You GO!!!!! God nudges us and we need to listen to him! Similiar thing happened to me, with a Dr. not listening to me. I KNEW my son had a hernia and she said no (because it didn't present typical). I refused to listen to her and told her I wanted a referal to a peds surgeon. I saw her a couple months later and she asked. When I told her he had surgery she was speechless ;) I TOLD YOU SO!!!! I didn't actually say that. Needless to say if I ever have to see her in the practice she listens VERY well, now ;)
We are still praying for Noah's recovery and your peace of mind!

Becca said...

Sometimes i get fusterated with doctors just because they have a degree does not make them the master of all knowledge. Im glad that you held on to your faith and stood up for him when you felt he needed it most. YOU ARE A GREAT MOM AND DAD. Prayers still coming your way and all i can say is YOU GO GIRL. hugs.

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Welcome to Noah's blog! We thank you for following us on our God-led journey and thank you for all your thoughts and prayers! Noah was born June 22, 2009 with many anatomical birth defects and underwent his first major surgery when he was just 4 days old. He has been in and out of the hospital since day one and has had a total of 4 major surgeries to date, with his latest one being the most extreme and difficult - his first open heart surgery on November 4 and December 17th, 2010. He is a warrior and this is his journey...

He is getting so BIG!!!!

He is getting so BIG!!!!
Getting a short break from his O2 :)

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Dec. 6, 2010

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