Update #20I find it hard to sleep with Tucker in the shape he is. I am struggling with the fact that we brought him here a very happy, loving , active boy....and now he is hooked up to so many machines! I am struggling with "the unknown".
We know today would have been a world record on waking up from this surgery....it was a major surgery...but because they tried and we failed, because we are now blowing i.v's, because we are on that up and down roller coaster of good numbers vs bad numbers on saturations/blood pressures/arterial pressures.....the reality of the whole thing is setting in. We have been in Boston one week....it isnt even July 1 yet. We still have a lot of up and down days ahead....and to be very very honest....I just dont know how we will get through it.
Tensions are high, nerves are frazzled...I think if we had not been here before then we would not be so fast to be frustrated but we have been in this spot twice before....two other surgeries that we have gone through on Tuckers heart.....and to know the long road that we have ahead is hard to know.
Update #19Sorry about the downer post.....just a lot on our minds and hearts.
Well we are back to sedated, paralyzed.....he was responding to us too much....pressures were up. So we will try again another day.
Update #18Well, they have the new i.v. in and the medicine switched to it. They are going to run all of them at once until they see the sign of pressures coming up,as not to make there be a lull of no medicine. Then they will shut the old one off and take it out. They have turned the medicine off that paralyzes him, so in about an hour or so we will know how he is going to tolerate it. As long as his pressure stays good we will continue to keep it off....if not then we go back to heavy sedation. PRAY PRAY PRAY.....
Update #17OK, so last night , or this morning whichever you want to call it, the groin re-thread didn't work. They tried an i.v. in his right hand, that didn't work. (A break was taken to look again) Came back and got the groin re-threaded on the 2nd try. So it is drawling blood nicely again but the pressure numbers are not consistent.
So, they just rounded and here is the plan for the day. A new line will be put in the other groin and in his arm/hand/wherever they can find it. The line in his neck is now misplaced and they cannot call it "central" line any longer....but they can continue medicine through it. That line will be taken out once the other i.v's are put in. He has pee, did good output all day yesterday and we have officially put out more (500 cc's more) than we have taken in, which is very very good. They dc-d (discontinued) the dylaril (the other diuretic to get flood off) and he is now just on lasix. They talked about putting something in his belly and getting the gut going....and after all this is done they will try to wake him. Wake him as in take off the medicine that paralyses him. He will still be sedated but he will be able to move his body. At that point, all pressures, everything will be monitored very closely..and in all reality he might just have to be put back to sleep. They usually see pressures go back up, oxygen level in blood go down, heart rate go up...all signs showing he is not ready....they have warned me so we wont freak out if and when it happens.
This is what I will not be able to handle. Him seeing us, feeling all the stuff hooked up,,,,and he is going to freak out. This is what I don't like, the helpless feeling of him laying in the bed, AWAKE, and I cannot do anything but try to sing to him, touch his head and try to soothe him.....this will be the longest and hardest day for me.....
So that is the plan for the day....but we all know plans change. It is the "game" that is played during surgery, during recovery.....plans are not in our hands or the hands of the doctors....the plans are on Tucker time.....slow and steady.