Disappointment (Sept. 30)
Early this afternoon Lucas’s breathing tube came out for his third attempt at extubation. A few hours later, the tube was back it. Once again it was not to be.
It’s hard not to be disappointed, but as we sat and held Lucas’s hands this afternoon we told him that our tears weren’t because we were disappointed in him. In fact, we told him, we were proud of him, proud of how hard he tried to keep his breathing going even when his little body clearly wasn’t up for it. To see him heaving with all his might, his face contorting with discomfort, was almost too much to bear. We told him that we felt bad that we had decided to try extubation again, but that he deserved the chance and that obviously he wanted as much as anyone to have that tube out of his throat. Unfortunately, though, he’s not ready.
As we spoke to him this afternoon, his eyes opened up and he looked a bit relieved to have the vent breathing for him again. He had been working up to the extubation for 3 days now, and had gone the last 15 hours straight on the ET CPAP mode, which means that for the whole last day he was basically breathing on his own with a little extra pressure. As he stared at us we told him that there were going to continue to be a lot of ups and downs along the way, and that we were going to be right by his side the entire way. Because we believe in Lucas, and this afternoon especially, we’re overwhelmed with the emotion of how much we love him.
Comments (13)
Christine
October 1st, 2009 at 1:11 pm
Difficulties will just make success that much better! I look forward to the day when you will be able to breathe on your own little Lucas. But in the meantime, your smaller every day successes keep me hopeful and excited too. No doubt the deep love your parents have for you play a big part in that! I hope I can meet you one day soon. Until then, much love your way…
Tara
October 1st, 2009 at 12:05 pm
You have come so far and gotten so much stronger since the day you were born. It is so evident in the images your mom & dad have shared. Keep doing it the “Lucas-way”, you haven’t been textbook since the beginning so I was not surprised that it wasn’t your time to get off the vent. But going 15 hrs w/ just ET CAP is incredible!! Rest up and we will be cheering you on all the way!
Tara Melinkovich (Carly's friend)
October 1st, 2009 at 11:34 am
Lucas is so lucky to have you as parents. You are amazing! What a little fighter Lucas is! I am sending my positive thoughts to give him even more strength.
Julie Graves
October 1st, 2009 at 2:13 am
Hey Lucas, you are one powerful baby, giving tom the strength to toss the tobacco sticks out: that is a very cool and wonderful collaboration between you two. And I must be the only one who just noticed, maybe the 10th time I looked at your pic in the lavender flowered outfit, that your hat has a little elf-spire at the top: a real magicians hat! So, no surprise that you are, as I seem to have said before, making us all better with your Powers.
Rest up until the next time, Lucas. Love to you and your parents.
Julie G
ilana jean
October 1st, 2009 at 1:04 am
it was amazing spending time with you this weekend Lucas, and I’m sorry about your tough time today. big steps like that are hard, but you are so strong, i know you will take it when you are ready, and congrats on all the hard work you’re already doing.
also gotta say you are so darn cute! im gonna get you some woody guthrie soon (non of the childrens stuff…) maybe you have ramblin’ on your mind, and just know im there with you!
john and jody
October 1st, 2009 at 12:56 am
there is nothing greater than agape (love) . keep it up and amazing will happen. john and jody
Paolasimon
September 30th, 2009 at 7:30 pm
always good to know that cacahuate is getting stronger every day. keep up the good work mi carnal. we’re sending our best energy. love, p y s
Meredith
September 30th, 2009 at 7:17 pm
This blog is incredible. You two are amazing parents, and amazing people. Your child is such a gift to this world.
Victory
September 30th, 2009 at 6:27 pm
Dear Lucas, You and your mom and dad are on quite a hero’s journey, and we who stand by and witness your beauty and courage are forever changed. You are surrounded on all sides by armfuls of love and tender prayers for your well being. And we are stunned and awed by your cutting edge fashion sense! Sending love, your Pappa and Nonna’s friend Victory
tom
September 30th, 2009 at 5:53 pm
Hey Lucas – one more thing. I just wanted to let you know that you’ve reminded me how I take some things for granted – like the precious gift of breathing. So two months into a smoking relapse is feeling like wasting a part of my life and grossly unfair as I watch you struggle from afar. I’m tossing the smokes and heading to the store for a case of gum! So thank you for giving me some perspective. I feel like I’m learning something new every day from you little guy. It’s not just words either – you really are inspiring! I can’t wait to see you in person and give your folks a hug! love, tom
Ashley
September 30th, 2009 at 5:42 pm
Well it seems as if Lucas wasn’t quite ready yet but his time will come. He is obviously is getting stronger each day and working toward some of these huge hurdles.
We are glad he is now resting comfortably and getting lots of love from his mommy and daddy. Poco a poco…
Hugs and kisses,
Madden, Tya, Ellody, Ashley and Brandon
Marsha
September 30th, 2009 at 5:42 pm
I’m so sorry this is so hard for you three. I’m glad Lucas is getting what he needs right now though–whatever that is: help breathing, so much love and a great wardrobe!
tom
September 30th, 2009 at 5:32 pm
Really sorry it didn’t work this time. We’ll keep sending all the good vibes we can to you Lucas, and to Burke and Krista! lots of love! tom, kim, benny
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