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Saturday, July 18, 2009

A Break.

Today was a nice break. We didn't do anything new, nothing experimental, just a break. I had a lot of much needed alone time, with Christian, of course.

Christian is moving even more now. A neurologist that I actually like came by and observed Christian. She made a comment that Christian's right arm really seems to be moving with intentional movement rather than reflexive or posturing movement. THIS IS GOOD - to get a neurologist to admit that SOMETHING is progressing is progress for me. She was a lot more of the 'let's see what he can do' attitude, which is my philosophy.

Christian now has periods of sleep and wakefulness. When he's sleeping, all is peaceful. When he wakes up, I know it. His breathing picks up, I can hear rustling around. He really reminds me of a newborn in his movement. He's also so strong he's about to bust out his arterial line. This is a line that measures your blood pressure in the most accurate way possible. His is especially sensitive because they had to do a "cut down" - I think that's what it's called - this is where they had to peel back his skin to actually look at his arterial vein because the vein is so tiny, they kept missing it. Anyway, they've had to restrain his left arm with TWO boards and a lot of tape. But he keeps breaking free from the tape. He is so strong! And the nurses keep saying so because he basically wrestles them when they're trying to change his positions. He had a nurse sweating today, although, by the looks of it, the nurse probably had a predisposition to sweat a lot.

I think it's so funny that Christian's stubborn personality shines through at the funniest moments. He has to be turned from side to back to side and he prefers his left side. So when he's on his back, he manages to wiggle himself back to the left. When he's on his right side, he'll keep his head turned to the left and struggle against laying on his right side. HE'S STUBBORN! But Manny remarked that maybe he likes that side so much because that was the position he liked to nurse in. I bet you any nurse or doctor would deny it but I choose to believe that reasoning.

So new developments...we're talking about starting a medication, I forgot what it's called, but it helps relax his muscles to improve his tone. Tone is the stiffening of muscles and locking of his joints he does when he postures. This can lead to muscle atrophy. So by giving him this medication, he will loosen up a bit and relax those muscles. We also discussed the gtube, which will be his feeding device. A little part of me is sad about this (surprise) because I want him to experience food and flavors and sushi. I'm so glad I didn't hold back when letting him taste things before the accident. I'm just sad he won't get to have any 1st birthday cake. Someday he'll be strong enough and on that day, he'll get a HUGE birthday cake!

We're also starting to talk about long term care. It will be A LOT! Meaning we have a long road ahead of us. But I'm so ready to get going.

Today I did some things to feel normal again. I watched some trashy reality television clips on Bravo.com, I caught up with the Mama's from my August Moms group, and I'm considering spending the night with Gabe on Monday so he can have some time with Mom and Manny can come stay with Christian. The more normal I make my surroundings, the more sane I can stay, and the stronger I can be for Christian.

Still praying hard for that cough and gag reflex.

7 comments:

Gabriella said...

Shauna, I admire your strength, you are an amazing woman. You sound positive and calm and I know Christian feels it. I'm sending you all the good cough and gag reflex thoughts I have, you are always on my mind. I'm sure Gabe will be happy to spend time with you. Take care of yourself, sending you lots of hugs. Gabby

Pippa said...

Make sure that to let Gabe know that we are proud of him for saving his brother! Give him big hugs from us =) I hope he is coping well with the emotional trauma and not having any nightmares.

And as usual I am sending loads of positive healing vibes to Christian to work on that gag/cough reflex!!!

Fight Christian Fight!

Brooke said...

LOVED the story about Christian's stubborness.....he's finding ways to shine through no matter what!! Those little quirks must seem so HUGE and wonderful to you! YEA for Christian......
I'm going to also continue to pray HARD for a better gag/cough reflex before the consultation this week. I know he can do it......with all the prayers being lifted up for him....even if not NOW....it can happen...not in our time but in HIS is what the Bible says...so I'm going to believe that!!
That is SO wonderful that you allowed yourself to do some things to feel normal again! I know the August Mommy's have been all worried sick so I know they were very blessed and happy to hear from you! Do those things as often as you can so you CAN have those little getaways...as short as they may be. And spending the night with your sweet Gabe is also a fantastic idea!! I KNOW he would love that! He needs you now as well and a night like that would do wonders for him as well!! We've been also thinking and praying for him as well as the entire family.....what a great bunch you guys are!!
Please take care!!! Thinking and praying for you constantly!!
XOXOXOXO

ferfischer said...

Thinking of you guys! You guys are doing great! I can't wait until Christian shows she he can get rid of the tubes and wires! He'll just love it, I can tell. I'm hoping for the right conditions for a successful extubation next week, I know he can do it! Also, I don't think there's a huge rush for the g-tube, is there? Cici didn't get hers until 1 month after her accident. Let him get extubated and start therapy first. (Of course, if there is a trach, might as well do both at once!, but I'm not thinking that way right now). Many hugs, and I'm going to send everyone from my blog over here soon, ok? Many hugs from all of us, and especially from Cici to Christian!

maz said...

Strong wee man!!! So happy to hear the neurologist being positive! Yea! Go Christian, go! And lol at the predisposed sweaty nurse! Make those nurses work little guy! Shauna, your resilience and strength of heart are truly astounding - you're a fab mummy (well..we always knew that!). Hope you have a good night at home with Gabe - give him a big hug from all of us too! Thinking of you all as ever, still praying and sending all the positive healing vibes I can muster. And enjoy some trashy reality TV! Maz xxx

BunBun said...

We're also loving the story about Christian's stubborn streak. Shine through little guy! Also glad to hear you got to some normal things. It's so important to do those little things to keep your strength and spirits up. I admire your strength in all of this. And yes, give Gabe a big hug from us too. He's our little hero! We keep you all present in our thoughts and prayers every day.

Cindy said...

So great to hear that you had a good day with Christian and that his stubborn streak is shining through. Good stuff on the positivity from the neurologist as well. I also think it's great that you're taking some time to have a bit of "normalcy" in your day -- I'm sure it helps regenerate your batteries and keep you going. You are so strong and have such a positive attitude and it's so wonderful to see that. Our prayers will continue -- praying extra hard for a gag/cough. Keep up the good work, Christian! We love you!

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