Rollercoaster Labor Day weekend (Sept. 7)
It’s been quite a ride for Lucas over the weekend. It all started on Friday when we came in to the hospital and found out that the doctors hadn’t taken enough fluid during the spinal tap they performed the night before. 
Though we didn’t talk mention this oversight in the September 4 post, needless to say we were a bit miffed, especially since it meant Lucas might have to get another spinal tap to drain more fluid. But luckily (for Lucas and the doctor who messed up) his head circumference hasn’t increased and the recent ultrasound of his head looked ok, which means his hydrocephalus, or excess fluid in the brain, has subsided for now.
So on to the next challenge: breathing without the ventilator. It was a leak in Lucas’s ventilator tube that inspired the the doctors to give Lucas a shot at extubation on Saturday (they were going to have to replace it anyway) and we decided to go along with it. As we reported over the weekend, Lucas breathed on his own for nearly 12 hours but eventually got too tuckered out. Extubation isn’t easy: Lucas’s little neighbor waited 5 months to get his tube pulled (it happened on the same day as Lucas), and his parents and grandparents were crying tears of joy when we saw them.
We got pretty emotional too, especially since the doctors had indicated just a few days earlier that Lucas probably wouldn’t be ready for a while. And when he had to get re-intubated, it was a bit of a letdown, for all three of us. Lucas crashed hard, sleeping the whole day yesterday and struggling with things like saliva suctioning that had been a piece of cake in previous days. It was as if he was so exhausted that he took a few steps backward, moving and breathing at the level of week 1. On top of that his equipment wasn’t working so well, leading to lots of beeps and alarms, and the hospital staff was often too busy to do anything about it. All this in turn had his parents pretty worried and we canceled an evening trip to go hang out with our cycler friends on a farm in Virginia, choosing instead to hunker down with the little man until late last night.
Sure enough, he eventually regained his strength, and our Sunday ended on a good note as we bathed him, changed his diapers (the breathing test didn’t slow down his pooping!) and acquainted him with new friends (a turtle finger puppet and a stuffed red blood cell among them).
Today Lucas is doing even better, wiggling around more that we’ve ever seen before. He had his eyes open for a good hour this afternoon, and really shakes his arms and legs when we put on his newest CD, David Grisman and Jerry Garcia’s “Not for Kids Only”. It’s a gloomy, rainy day outside Children’s right now, but inside room 638 things are going pretty well…
Comments (10)
Diane and Scott
September 13th, 2009 at 4:23 pm
We are so happy for you and the little guy. He is getting stronger every day . I believe in you Baby Boy. And a big hug for you two mom and Dad. I am the one that cleaned the house when you lived out in the country . We are due to have our first Grand baby anytime. Bless you both. and the little man will be fine. He is so pretty. I know your not supposed to say pretty but he is. LOL Our love and Prayers , Scott and Diane MacLean
Jennie & Scott
September 11th, 2009 at 2:32 pm
Hey there,
Scott and I love the “Not for Kids Only” CD. We listen to it and we don’t have any kids at all! I am glad to know you have it, as I was thinking that I would send it to you.
It was great to talk with you Krista. Little Lucas looks great! Looks like he’s putting on a little weight. Nice work little guy!
Jennie
Liz and Kevin
September 9th, 2009 at 9:11 am
What a journey! And your focus, love and experience putting up a passionate fight seem to be serving you well. We’re so glad to hear that Lucas’ wiggling continues to pick up, and that he has such diverse musical taste! Thinking of you every day. Sending love every day.
Liz and Kevin
john and patsi waller
September 8th, 2009 at 11:08 pm
Dear Burke and Christa,
Seems I don’t get to these wonderful resumes until a day or two late but I/we are thinking of you each day. What a miracle boy. Lucas has touched so many lives in his own short one. You are already amazing parents!!!
You have our continued love and prayers. Special XOXO’s to Lucas.
Laura J
September 8th, 2009 at 6:17 pm
wow lucas! those sun lamps paid off, you are one tan little baby! i love seeing these photos and videos of you and reading about all the steps forward you’re taking. plus it’s nice to see your wiggle dance.
everyone in El Salvador has been asking about you and can’t wait to meet you.
tell your mom and dad that i’m thinking about all three of you.
love,
laura
Sonia
September 8th, 2009 at 6:08 pm
Hi Krista, Lucas Camilio y famlia! Te habla Sonia, tu compañera de clase de interpretación del año pasado. Acabo de oir (through Rosa’s e-mail) sobre Lucas Camilo primero que llegó al mundo [felicitaciones], y segundo que ha tenido dias superheróicos para que su cuerpecito se ponga fuerte. Felicidades por este nuevo luchador en tu familia. Les deseo que Camilo se siga fortaleciendo a diario y pueda estrenar su cuarto pronto. Saludos, Sonia.
Simon
September 8th, 2009 at 2:17 pm
Te queremos mucho, pulgarcito lindo!
Ashley and Madden
September 7th, 2009 at 11:24 pm
Hey Lucas, Krista and Burke-
Wow- what a rollercoaster you have been through these last days. Doesn’t sound like an easy time. I will say that I am pretty amazed watching Lucas’s movements in that video as they are SO different from what I witnessed three weeks ago. Here, at the Stansbury/Gillespie residence, we truly relish in each improvement and smile at each kick, wiggle and flinch. I will be coming on Saturday with MANY children’s CDs so hopefully Lucas will continue to get his groove on in the days to come.
xo
Ashley and Mads
Jocelyn
September 7th, 2009 at 9:26 pm
Wow, Lucas! Those are some moves! Keep feeling the rhythm, little one.
Nurse Amy (WHC)
September 7th, 2009 at 6:57 pm
Hey Lucas!! (mommy and daddy too)
Since the moment we met bright and early on August 17, a day hasn’t gone by where I haven’t thought about you. Thankfully, your parents have allowed me to follow your blog…and don’t worry…I check it about 3 times a day. I am so amazed to see how well you are doing. The video clips are my favorite; I couldn’t believe my eyes when I saw you “wiggling” in your bed, let alone that you made it 12 hours without the breathing tube! I am also glad to see you still have your doggie by your side.
You have overcome so many obstacles and made so many people proud. You are one of the many reasons I enjoy waking up every morning and going to work. I’m so glad we got to meet and spend time together….even if it was only for a few days. Keep up the good work little guy, and hopefully one of these days we’ll get to meet again!!
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