Post surgery update

Thank you to everyone who kept us in your thoughts and prayers yesterday. Atticus did great during his surgery. Dr Bradley managed to perform the Tricuspid Valve repair. The gradient in his aorta turned out to not be as bad as they thought, so he didn't have to do anything about it.

Atticus has been recovering like a champion! They were able to extubate him at 3AM this morning, and have begun to wean down some of his medicines. The function of the valve has looked great on his echocardiograms so far. Please continue to pray that the repair stays repaired, and that we won't have to worry about a mechanical valve.

They're keeping him pretty sedated for now. He'll wake up for a few mins, give us a weak smile, feel around for his Cookie Monster, and go back to sleep. The only problem he's having so far is that he is "eating through" platelets again. So please also continue to pray that he can keep these numbers up.

The game plan for today is to keep him comfortable, mostly sedated, and to try to wean him down to just Milrinone. We're so thankful for the team of doctors and nurses here that are working around the clock to take care of our little fighter! As always, keep on prayin'!!

A change of plans

Well, its been a busy few weeks, and a lot has happened, so I'll do my best to update.

Atticus' original surgery date was bumped back from July 11th to today, July 20th. They had a few emergency cases come in that week, so we got rescheduled. We came down yesterday to MUSC for Atticus' pre-op work up, only to receive more news that floored us.

There has been another change in plans for surgery for Atticus. He won't be having his Fontan procedure today as we originally planned. Instead, Dr Bradley has decided to attempt to repair Atticus' Tricuspid Valve as well as a narrowing in his aorta. He decided that these procedures needed to take precedent over the Fontan, which has now been delayed for at least a year.

We were stunned by the news yesterday. I thought this was going to be attempted at the same time as the Fontan (because that was the plan in January), and I'm not quite sure what exactly Dr Bradley saw in the pre-op work up that changed his mind, but I have to trust his judgement that trying to do both procedures at once would be too much on Atticus' heart. Its frustrating to get yourself prepared for something like this, only to thrown a major curveball. But Atticus has never been good at doing anything "normal" when it comes to open heart surgery, lol.

Although I'm disappointed that this means that we will still have another open heart surgery in the future, I have to trust that this too is all part of God's plan for Atticus. I know that He is always in control, even when I feel helpless. Please continue to keep us in your prayers today as Atticus is already in the OR, waiting for surgery to begin. Pray for Atticus, those involved in his care, for strength for Robbie and I as we deal with these changes, and wisdom to make the right decisions. I'll update later today as surgery progresses. Just Keep on Praying!!!!

One week....

So its down to just one week until Atticus' Fontan. Less than 7 days to go. We've had all our final visits from our therapists. We stopped Atticus' aspirin regiment a week ago. Only 3 days of work left for me. And Atticus has managed to catch a cough.

It seems like mostly sinuses/allergies. Plus with the recent heat wave, its made everything super dry. I took him to the doctor before the weekend, and she says his lungs sound good (for him). I also followed up with MUSC on Monday to get their opinion. They want me to follow up with the pediatrician again this Friday, just to be sure it still sounds the same, and that we still think its just sinus/allergy related, and then we'll decide if we're still on for July 11th.

I have so much to do, and its like watching sand run out if an hourglass. I feel like part of me wants to prep for a 2 week stay; part of me wants to prepare for another 6 month nightmare. Part of me wants to think I've gotten most things prepared, aside from some laundry and odds and ends; part of me is doing figures like an old accountant screaming, "Did you save enough for this?", "What about this expense?", while another part is an old, nagging mother going over a "to-do" list that looks like something out of a cartoon with NOTHING crossed off. Not to mention the part of me that wants to remain cool, calm and collected while the other part is an emotional madwoman.

To say this is all overwhelming is the understatement of the decade. I have known this day would come for over 3 years, but I'm still not ready. There are things I know I could have done to make myself feel better prepared. Then I try to remember I'm only human. But then, along comes this cough, and now I'm not even sure if we'll be able to have the Fontan on time. Its so frustrating.

And then I try to remember that God is continuing to work on my patience. That He has a plan for ALL things, and that its His timing, not mine. Please continue to keep us in your prayers, thoughts, and well wishes. Pray that Atticus will feel better soon, and that we'll be able to have his Fontan as scheduled. And feel free to throw one in for mine and Robbie's patience and peace of mind during this time. I'll try to update on Friday, one way or the other. Just remember, Keep on prayin'!