Saturday, July 18, 2009
We have POOP!!!!!
Quiet night
Friday, July 17, 2009
Holding time....
YUP... I got to hold Tuck for about 30 minutes tonight.. A good nurse that knows the need for holding and loving! She just felt Tucker acted as if his skin was crawling, asked if he had been able to get up out of bed at all since we got here..NOPE...so she did all the arrangements of the i.v's and the vent and I got some Holding TIME!!!! I dont know if Tuck knew he was in my arms or not but it was nice to be holding him, giving him kisses and talking quietly to him. A much needed fix for me.
Today,,,,no poop! We are still holding any other advances until we can get his tummy back to normal size. So, still we pray for poop.
We also had an extensive echo done on Tuckers heart. The mitro valve was in question as it is on the smaller side. However after one hour or more of 3-d imaging we have a very good report. The left side is still hard but is functioning the way it should, everything is doing what it is supposed to be actually. Very good news. The stiff left ventricle will relax over time, not necessarily time in the hospital, but months of time. It will all depend on if Tucker can sustain his body off the supports he has now while it continues to relax or if we will need more time to help it relax with the supports....it is all about Tucker time. It could be 3 weeks, just long enough to get the vent off and things tweaked before we head home, or it could take 2 months until it is relaxed enough for Tucker to sustain his function.....but the great thing is, is the surgery worked and the heart is functioning great!!
Praying for POOP!!!
I know, I know...nothing is sacred. Tucker is very bloated, tummy distended some. We pulled a lot of gass off him last night even after our initial poop yesterday. They took an x-ray of the belly today to see what kind of shape we were in. He has stool blockage that they will work on getting out today with several different tactics. Nothing else is being done today....just Praying for POOP!!!!
Thursday, July 16, 2009
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....
Wednesday, July 15, 2009
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
Monday, July 13, 2009
Exploring the city...
Paralytic off once again
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....
Sunday, July 12, 2009
Lazy Sunday....
Tucker is resting today nicely. We have increased his sedation so they could possibly try to raise the paralysis tonight or tomorrow again. That is about all that has changed today. The usual new iv's, tweeking of the fluids...that kind of stuff is always going on but nothing other than that.
I started a new book by James Patterson. (thank you mom) The library isn't open on the weekends so I was unable to go and get the 4th Twilight book to read....maybe tomorrow I will go. (gotta read about the wedding being planned--heard #4 is the best of all of them so far) I know Sheena and Alisha will be very proud of me getting as far as I have on them.
I talked to my mom today, I talk to her every day but today I got to put in a request for a package with date-fill cookies and some donuts. She is at Gram Peters house, her mothers house, in up state NY...Gram makes the best donuts!!! (Hi Gram) So I will definitely be looking for that package soon...too bad she couldn't throw in some cheese curd as well (hint hint) Love you mom!!!!
SO, I don't want to jinx it but......quiet day. Todd went to see the tall ships that were in the harbour today so I will post pictures of them later.


















