A week ago today, we were waiting for news from the Operating Room and madly texting out whatever morsel of information we could get. Things are quite different now!
The weekend was a mix of forward progress for Julia and utter emotional exhaustion for Jocelyn and I. It’s great to see how one tube after another is getting removed, but we were unprepared for the post-operative discomfort from gas retention (and elimination – phew!) and the attendant loopiness of getting off of the sedatives and narcotics. Versed is a wonderful drug that can make people mercifully forget the procedure they underwent, but it has some pretty wild side effects for the uninformed parent (ed. note – every child has a different reaction). Julia was dealing with everything from lazy eye to “discovering” her hand and occasionally popping herself in the head with it.
The team removed her central line (the big IV in her neck) yesterday and replaced it with a poke in her thumb to be sure they could get an IV in if they needed it. All the pokes have become very hard on Julia and she let the team (and her dad) know that she had had enough, and it made her inconsolable for most of the afternoon. After the third hour of crying and simply not being able to do anything about it, I hit a wall emotionally and had to take a walk and have a hard conversation with the Almighty. There will be more on that in a later post, but I’m glad we’re on the other side of the wall.
I thought we were in for another tough day when the IV in her hand basically fell out from Julia continuously wiggling her hand out of the splint that was supposed to keep it immobilized. The team was going to need to give meds and platelets for the removal of the chest tube, so she would have to receive another poke. I hereby give an official “Friend of Julia” Award to Chirece from the IV team for getting it done with one poke and with a minimum of fussiness of our overly-poked girl!
I’m happy to report that Julia’s final drainage tube has been removed, along with the pacemaker wires. More and more, her body is doing what it’s expected to do with no complications. The team will spend the afternoon letting her sleep off the calming meds (there’s another dose of Versed on board now – darn!) and continuing to wean her off the oxygen. More news coming soon!
6 Responses
Oh Chris I know all too well, how hard it is to watch when someone you love is jabbed so many times. However, with a child I imagine it hurts a little more, because you can’t explain to her why they are hurting her so many times. Remember one step back, three steps forward, until forward is all we know. It was the thought that was given to me by a minster at the U of M. I just kept saying it while sitting with Rob. Soon forward was the plan to go home.
Best of love, luck, and prayers to you three!
aunt jane
she looks really great. you’d never know she was going through all this by the recent pictures.she looks much better then audrey looked at this time. hang in there, i know it might not feel this way but i really believe that the hard part is over. it was so nice to see her being held by her mom, that was a great feeling for me. our thoughts and prayers are continuously with you all.
the tolonen’s
There should be a trip to Hawaii at the end of this week to reward you all. Instead there is the trip home with your little family intact, which is a thousand times better.
Thank you so much for making this site and including pictures and details.
My 4-month -old is having surgery soon for an AV canal defect, this helps me prepare and get familiar with some of the terms.
Glad to help, Cindy! We wanted to make our story a resource for parents coming after us. It’s amazing how this little endeavor has reached so many!
Ok Giulia!!!
Good job, if this challenge is an indication of how u will face the many challenges life throws to all of us, humble mortals, on this hearth, you will be just fine.
I think when u are a little older you should thank the Man upstairs for the unbelievable parents you have! They are an example and an inspiration to the rest of us on how to behave, hope,pray,and have faith, and most of all how to love and protect children.
I saw the smile u gave dad in the hospital, keeping on smiling because you are surrounded by love, and that is all you need to go on.
I hope we can meet you soon, I leave in chevy chase close to your aunt Lauren, maybe u can come and see the cherrie trees!
A kiss and tell mamma e papa I say hallo.
Your Italian aunt Desiree