Updates, July 13th-16th

I apologize for being a bit behind on the updates. My own little world has been in a spin. Please do remember that any small updates or major events will be tweeted. You can follow me on Twitter or check Tucker's Mommy's blog.

Hugs and thanks to you all for being so wonderful during this journey. Karen and Todd are very grateful to have so many people thinking and praying for their fantastic son Tucker. So here are the latest bits of info from the last couple of days.

*********************************************

C H E E E E E S E

Is that not the cheesest smile ever!!! Thank you Ms Whitney for sending us this picture. LOVE IT!!!!

If you touch on the picture to zoom in, notice the purple tint to Tuckers lips and truly all of his body; finger tips, around his eyes....today it is no longer there. PINK replaces it...a WHOLE HEART BABY!!!!

Our house....

So, I thought I would share a picture of our "home" in Boston. Just a few of the room, where we hang out . I added some "decor" today. Construction paper hearts all over the room, a WE love TUCKER banner from mom, and tomorrow a mobile to hang over Tuck's bed of hearts with our faces on them.

Today was a day of small advances, one being he did the ventilator on pressure support only, which is when the ventilator only gives him help as he breathes himself. Back pressure to help fill the lungs to the appropriate place before expelling. He did this all day on his own, over all sedation. They took him off to rest for the night but will put him back on it tomorrow. We just had a POOPY diaper......yeah yeah yeah...and lots of gas after that. He was agitated all day, couldnt get comfy and I thought it had something to do with his belly....he was throwing his feet down on the bed, over and over again, not like him. So they gave him a fleet enema this morning and it is finally kicking in and he has been much nicer tonight on his awake times. I even got to turn on the music and roll him on his side, both he has not been able to tolerate til now. The sedation doses went up again today and more than likely will continue to go up until we can take the drip sedation drugs away. Unsure how long that will be or take.

Hunter is coming back out Sunday. I , we, miss her so much. It will be nice to have her as a distraction and I am sure Bubba will be glad to here her voice and see her when he wakes up. They are the bestest of buddies.

OH and Tucker officially "down under" today.....we have Australia praying for Tucker!! It is so amazing how many lives Tucker has touched.... and continues to touch each day.

Wednesday, July 15, 2009

new artwork for our LOVE wall....

Thank you Ms Allie....

I do have to apologize....

that I have had an attitude all this week. Just feeling blue. Tucker has had a few episodes of awake time, he has held his blood pressure, sats and everything he is supposed to do to show progress in the relaxation of his left ventricle.....good right! Great!!! Awesome! However, the doctors are less enthusiasitc and continue to put more sedation on board. When he has more sedation, he does not breath over the ventilator...which is NO progress forward to the ultimate goal. This happened several times over the last 2 days, since paralytic was lifted. Each time, they continue to put more and more drugs on board, putting him in a spot that he doesnt breath over the vent. WHY???? Because they want to have control over the situation, control over the vent, control over when and how Tucker will come off the vent. SO, until they find a sedation that will keep him happy but breathing this is the game we will play....to be honest, I dont think they will ever find it. So, will they keep this game up for weeks? for months? until they figure it out or will the fighting the sedation while Tucker is trying to fight the tube put Tucker back at risk for some kind of failure and we will take steps back after doing this dance for weeks....? Good questions right? I think so....so I have asked over and over again the past two days. This is my frustration.....We feel that Tucker is trying to tell them, he is fiesty, he wakes up, holds out his arms to be held, he holds your finger, he looks into your eyes, he kicks his feet,,,,a cry for normal, a cry for help.....then they kill his spirit and download all the drugs until he hits a brick wall. Then it wears off and we start all over again. A terrible feeling of helplessness.

So yesterday I couldnt stand it anymore and stayed away. And frankly today might be the same way. I am just so upset, our day scheduled home has passed by and there is no "time frame" in this at all....it is a day to day basis and I HATE that!!

Tuesday, July 14, 2009

Precious fingers and toes

Today was a bad day for me. I mostly stayed away from the hospital...slept a lot and just stayed away from the room. There were a few events that led up to my "bad mood". But I am not going to bitch about my hospital settings, freaking dumb doctors, and their plan for my son...the ever so nonchanging plan. SOOO, instead I am going to send out some pictures. Enjoy

Monday, July 13, 2009

Exploring the city...

There have been a few times when we steal away a few hours and explore. Todd went to the bay and aquarium, we walked to Fenway Park, went to an area mall....little things to get out. I love the architecture here, the way the brick buildings are tall and thin and lined together in a row. One a little different than the next.

Paralytic off once again

This is my view from where I sit in the "bed space". We watched today as Tucker slowly but surely woke up. Toes wiggling, arms moving....slowly he came to life. The medicine, sedation that is, is much better this go around --no bucking bronco...just a wiggle worm. He is breathing over the vent but minimally, he will have to improve much more to come off. The balance of timing vs. sedation is the key. Tonight I think we just lay low, make sure our awake times stay as good as they have today...then see what tomorrow brings. Maybe a different sedation, a tweak to back off, who knows.

Life at a hospital....

I know a lot of our followers have had first hand experience at living out of a suitcase, where constant bells ring, pagers go off, iv's are put in, sleep is little or none, while their loved one is hooked up to machines. It is not a fun experience...actually I wouldnt wish it on my worst enemy. We have been here 3 weeks, that is 21 days...of hospital food (which is too expensive and tastes bad, atleast in KC the hospital food was OK), of showers that make your skin crawl (just because all parents use the same shower), of days without our families that are back home, 21 days of misery.

Hospitals, dont get me wrong, are a great place. We need them. If we didnt have them where would we be? The reverse is unthinkable. But it doesnt change the fact that life in a hospital, in a city where you know no one, where you live and breathe it.....changes you.

There are 27 ICU beds on my floor. 27 families effected with hospital living. Some have been here for months, some just coming in....you can see the same look on everyones face, a face of "what today? a good day or bad?" Curtains close, procedures (big ones) are done at bed side to save a life, codes blues are called and all you can do is Hold on and cry....praying for that family and yours.

I am feeling the weight of living from a suitcase, watching as Tucker goes forward then back then forward again but much slower. It is a hard , exhausting road....