The Ups and Downs of Recovery

So I had this real long and well explained post about what all has happened these last two weeks and all of a sudden it got lost.  So instead of that you will get a short post because that took a lot of effort.

After David's Norwood procedure we were constantly told that the recovery was like a roller coaster, lots of ups and downs, but we never really experienced that.  David just kept on going up and up.  That has not been the case this time around for our little man.  Whether it was his excessively fast heart rate (at times 277-290) or it was the really bad pain issues or just having to be woken up every couple of hours for meds David has been in a pretty foul mood for the last two weeks.  He hasn't slept the best in the last couple of weeks, the only time he does sleep good is either in our arms or in our bed which we love but even then it's still not the best sleep or normal sleep for him.

The hardest part is when he coughs, because his sternum isn't healed yet when he coughs his rib cage kind of separates a little bit and he is in extreme pain and is inconsolable.The only thing to really make that go away is time so we are excited when he is fully healed up.

On the plus side David ate rice cereal for the first time tonight! It was pretty liquified but he took to the spoon like it was going out of style and seemed to like it so that makes the day ending on a good note.  He did awesome until he coughed again!  Overall it has been hard to see our boy hurting and not recovering as quick as we thought but we know he is on the road and is doing better every day.  We go back to the cardiologist int he morning for his post op check up and hopefully we will get some more answers and help for everything that is going on.  Thank all of you for your thoughts prayers and support.  We saw today where you all have visited this page 15,000 times since he's been born.  That is mind boggling to us that he has that much love and support out there...Thank you, we love you.  We will leave you with a pic of David's first foray into cereal.

Living on a Prayer

For the first time since we have taken David home I am not sleeping in the same room with my wife and son. We are in a semi private room so there is only really room for one of us to sleep in there and Cole is sleeping in with him (let it be known that she offered the pull out chair to me and I declined which makes the next part even better because I have the top bunk!!! Yes fat boy Drew on the top bunk! So it's weird knowing my family is right down the hall and a couple of feet lower than me.

On to the important stuff David now has lived through 2 open heart surgeries!!! I mean seriously the kid has fought through more stuff that I'd give up on already in his life. He has had a good day since then, some mini downs (high temps and heart rates, having to be restrained because he's trying to pull his chest tubes) and some ups (going off the respirator, weaning dopamine sleeping and waking in cycles). What I am amazed by is his fight, determination and stubbornness. It really can't be explained.

David wad taken care of one of our favorite PICU nurses and she did a terrific job. It's great that after 6 months and so many other patients she could tell the nurses and dr's around her what David liked and didn't like why his body was reacting this way or that. It was amazing to watch.

David is still doing good as we enter the night. One thing we have noticed is how aware David is, he hears us and whenever he can move his body starts to lean and tilt in the direction of where we are because he knows and trusts our voices. There's something preachable there but I don't want to preach or try to wax eloquently on the day. Today was hell, it was scary and at the same time love never shined brighter. We can't thank you enough for your prayers and thoughts, please keep them coming David isn't out of the woods yet and he has a kidney cath later in the week. We love all of you!!!!


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Monday Monday gotta get down on Monday

So we are in the final countdown awaiting surgery for David on Monday. I'd love to say that I am at peace, that I know everything will be just fine, that I have the utmost faith that everything will work out splendidly....but that would be a lie. I AM SCARED! Not the uh oh something is going to jump out and make shrill like a little girl scared but rather the pit of my stomach up all night watching David breathe and crying scared. I think the big difference for me is the first surgery was risky and scary and we worried about our week old son not being there but now we worry about David, he has this personality all his own. Today during pre-op he was screaming bloody murder as the nurses were drawing blood but as soon as they were done and one of us were holding him he looked at the nurses and gave them the biggest grin. I cherish each of those smiles each moment we play super David, each moment he falls asleep in my arms, not because I'm worried it's the last time I'm going to do it (even though my pessimism pops up from time to time) but of the sense that he has a long road of recovery still to go and it will be a while until I get to do it again. Maybe these are my scared you know what less ramblings. What I do know is that the last 6 months of my life have been far and away the most amazing of my life, it has brought me closer to Nicole and God and our families. David has opened up a part of me I didn't know existed, in his young life he has already made me a better person.

Enough about me because in the end David is the one going through the surgery and the battle. Lately David has been a little constipated leading to some diarrhea (doesn't make sense to me either). He had a dosage change a little while ago and it may be catching up with him so we talked to one of the cardiologists who now has David on pedialyte and laxatives to move his stool (I know great reading) so now we are obsessed with checking him and making sure he is ok. We are eagerly waiting for Monday to get here and get done so we all can recover re group and make it back home to Bowling Green as soon as we can. Please pray for David, pray for his strength and for his patience as he wakes up and can't reach for everything like most 6 month olds. Pray for his doctors and surgeons and nurses. And if you have the time pray for Cole and myself and our families. Thank you all, I will try and post updates on my Facebook and twitter.

Drew





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