Week 18 – Day 1

It was a hard day of waiting, and the hardest part is that the waiting continues. Brendan had his catheterization and his bronchoscopy today and made it through both procedures with no serious issues. He came back to his room still on the breathing tube/ventilator because the bronchoscopy can cause irritation to make it difficult to extubate after the anesthesia. They plan to extubate in the morning if all is well. They are keeping Brendan sedated with Ativan and Fentanyl and using restraints on his little hands if needed to keep him from extubating himself. We have all seen how his little pinchers work and he will be all over pulling that tube out if given the opportunity.

We will not know anything about the results of the tests today until the doctors have had a chance to do lots of math, study the results, and get their heads together about what they saw. The little information we have so far shows that there is still contradiction of opinion between some of the doctors. We will be having a “family care conference” soon where all of the specialists from all of the fields will get together in a sit down with us and really discuss his treatment and make sure they are all on the same page with the same goals and priorities. Hopefully that will be in a day or two and we can move forward.

What we did hear today from his cardiologist was some good news. I think he was just trying to cheer me up some but the facts are still the facts. He says that even though Brendan’s anatomy is different that yours and mine, he still has a strong heart. They like how it is working and they did not find anything surprising during the cath. He insisted that once Brendan can make it through his heart repair surgeries that he should do very well. Getting him there is going to be the hard part but there is a bright light at the end of the tunnel for him. There is another baby named Brendan on the floor a few rooms down from us. He has had several surgeries already and is 18 months old. They have exhausted all of their options with him and he is now on the donor list to receive a heart transplant. In all of the things that my Brendan has gone through, I am eternally grateful that this is one of the things we are not facing. The agony of wanting your child to live and grow, but knowing that to do so requires that someone else’s child must die to make that organ available – I just can’t imagine it. We say hi to the other Brendan every day when he makes laps around the floor in his stroller and I feel for his family so much.

This was Brendan before he left for his procedure. He had been given Morphine and Ativan just a few minutes prior to the picture so he was pretty checked out.

He came out of his procedure with the breathing tube but the cannula was still there

They got him all retaped and bundled up, hopefully he will have a good night. He gets over the Fentanyl really fast, so keeping him calm and still will be a real challenge.

Trevor stops all of the cute things he is doing to make camera face whenever I try to take his picture now.

I am squeezing and cuddling my little Trevor, making the most of my time with him at home

3 thoughts on “Week 18 – Day 1

  1. Good job, Brendan! Whatever the doctors come up with, you show them that you are strong and Gramma knows you will get better and be home before we know it. We all love you very much.
    Trevor must be practicing for “school pictures” when they say “smile” and that’s when they don’t, or you get the “cheese face”! He is cute no matter what face he makes!
    Tiffanie, you continue to make me very proud of you. I know that today was hard, with waiting and worrying, and yet you get home and write this blog for everyone else who looks forward to seeing it every day. There are so many people that care about you, Bill, and the boys, so if positive thoughts and love and support count, you will all be fine.
    Sleep well, and cuddle that little boy at home until you have two little boys at home.
    Sending much love to all of you,
    MOM

  2. Good Morning from the East Coast!! Ditto, Ditto, Ditto Gramma’s love note!! Brendan remains on our church prayer list and in the weekly bulletin as “Baby Brendan” and family, so lots of prayers are coming from the East coast!! As my Carrie always says, sending “good Ju-Ju”. If you could package worry, frustration, anticipation and love…..then sell it on E-Bay, you would be billionaires!! We just wish we could ease your stresses! But, the best we can do is send tons of hugs and lots of love!! 🙂 🙂 XOXOXO

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