Hey everyone! Just wanted to give a quick update on Atticus. He's doing much better since my last post. Thankfully, we haven't had any repeats of that performance. We had our cardiology visit on Monday, and everything is doing well. His heart function is good, and he's up to 26lbs and 34 inches long! Dr Williams decided to do another echocardiogram since it had been about 6 months since his last one. Atticus was pretty well behaved during the process, but you can tell he's starting to get to the age where he really doesn't like lying still for that long.
Everything was going fine just like a normal check-up, when Dr Williams brought up the subject of Atticus's Fontan. He thinks that after his next visit in October (a few weeks after his 2nd birthday), we should probably start the process for the next open heart surgery, with it probably be scheduled sometime in January 2012. I'll admit that I've know that this day would be coming since I learned of Atticus's heart condition at around 24 weeks gestation, but it still hit me like a ton of bricks. His decision was based more on Atticus's weight than anything to do with his heart function, but it still makes me panic just a little. I can't help but think about everything we went through with Atticus during that first 160 days. My mind starts going down all the little "what if" rabbit trails, and I have to force myself to focus on today, the here and now. Nothing is set in stone yet, so there's no sense in worrying about something that hasn't happened yet, I keep reminding myself.
Other than that, Atticus is doing great! His PT and OT are having to both come up with a new list of goals for him because he's managed to finally check them all off! We've been practicing walking in his reverse walker, he's finally letting objects go inside of a container, he's starting to learn more and more signs, and he's getting more and more imaginative in his play! Atticus LOVES the video series Signing Time. He's made the connection that the signs mean different things, and he's fascinated. He's learned to sign: ball, more, Mommy, Daddy, baby, book, water, sleepy, "Signing Time", eat, fish, dog, flower, bye-bye, milk, cheese, and he recognizes even more signs! Everytime he sees a TV he starts making the sign for "Signing Time". He even did it when we were having his echocardiogram done. lol! He thought the screen for the machine was a TV!
I think that's about all for now. I'll keep everyone updated as we learn more about Atticus's Fontan. Until then, keep on prayin!
Friday, July 29, 2011
Wednesday, July 13, 2011
Not the way I wanted to start my morning......
So yesterday was a pretty stressful day, and unfortunately it started very early at 5:30 AM. I had given Atticus his last medicine at around 1:30 AM and gone to bed. Then, around 5:30 AM, I had woken up to use the bathroom. On the way out of my bathroom, I noticed the smell of formula. This in and of its self is not totally unusual. Atticus has a tendency to toss and turn in the night, and sometimes he disconnects himself from his feeding pump in the process. So I walked over to his bed and reached down in the dark to check his connection, and felt that it was intact. So I thought that he must have gotten the extension tube totally twisted around and actually disconnected it from his Mic-key button.
And that's when I felt the balloon, and totally went into freak mode.
For anyone who's not familiar with a g-tube, the balloon is what is inflated on the inside of the stomach to hold the Mic-key button in place. So when I felt the balloon, there was one imminent question in the front of my mind.....How long has this been out??!
I immediately ran over and turned on the light switch (Poor Robbie!), ripped Atticus' formula-soaked blanket off of him, and pulled him out of the crib and laid him flat on the floor. But once I lifted up his shirt, I saw that the answer to that question was...."for too long". The hole for the Mic-key button was almost completely closed. As I sat there on the floor, swearing and crying and praying, a million thoughts started running through my brain. "Do we go to MCG (which is closer) or to we try to go for MUSC (who was more familiar with his case)? What should I pack for him? Thank God the older kids are spending the night at Nana's.....etc" Then my brain took the course that all mothers' brains take, which is inevitably the worse case scenario. I was sure that this would mean another surgery to replace the Mic-key button, which would mean he'd have to go on a ventilator again, which meant more sedation, etc, etc, etc.
I finally managed to pull myself together after about 5 minutes to get my butt in gear. Robbie and I got dressed, he got the car ready while I packed a bag for Atticus, and we headed out the door towards MCG. Thankfully during all this craziness, Atticus was laughing and squealing, thinking that he was getting to go on an early morning car ride. He wasn't in any pain and was pretty pleasant. Thank goodness for that. I think I would have totally lost it if he was in pain or "screaming" the whole time.
We got to MCG by about 6:30 AM and went to the ER. We finally got through triage, and they sent us over to the Children's side of the hospital. Thankfully, the doctors were able to get a thin catheter in the hole, and slowly (over about 3 hrs) stretched it back open large enough to place a new Mic-key button. The process hurt Atticus and he would cry whenever they were "stretching" or finally placing the button. It just broke my heart because he was doing his silent scream (due to the vocal chord damage), his eyes full of tears, and he was just reaching up for me to grab him. It was torture....for Atticus and for me. Poor Robbie couldn't even stay in the room. He had to walk in the hallway every time they'd do something to him. He's kinda squeamish when it comes to that sort of thing. That, and he can't stand to watch someone make one his children cry. It instantly infuriates him. So he just excused himself in the hallway so he wouldn't have to watch.
Finally, at about 10:30 AM, Atticus had his G-tube back in, I had given him a little bit of formula because he was STARVING, and we were headed home. Not 15 minutes after we pulled out of the parking garage, poor Atticus puked up everything I fed him. His stomach had been empty for too long, and had just been through too much abuse. We pulled over, got him cleaned up, and finished heading home. He was passed out within another 5 minutes after that. I caught him up on some food and medicine as soon as we got back to the house, and we spent the rest of the day trying to take it easy.
I have to say, Atticus is quite the little tough guy. Other than being really hungry for the rest of the day, he didn't even shed another tear. And by today, he was back to his usual schedule. He just continues to amaze me at how resilient he is. Thanks to everyone who prayed for us yesterday during all the craziness. I'm just SOOOOO thankful that Atticus didn't end up needing another surgery after all. That alone was an enormous lift off my shoulders. I suppose can't be too mad....that was the first time in almost 15 months that we've had to make a trip to the hospital with him for an emergency. Ok, thanks for letting me vent about my stressful day yesterday! As always, keep on prayin' for us!
And that's when I felt the balloon, and totally went into freak mode.
For anyone who's not familiar with a g-tube, the balloon is what is inflated on the inside of the stomach to hold the Mic-key button in place. So when I felt the balloon, there was one imminent question in the front of my mind.....How long has this been out??!
I immediately ran over and turned on the light switch (Poor Robbie!), ripped Atticus' formula-soaked blanket off of him, and pulled him out of the crib and laid him flat on the floor. But once I lifted up his shirt, I saw that the answer to that question was...."for too long". The hole for the Mic-key button was almost completely closed. As I sat there on the floor, swearing and crying and praying, a million thoughts started running through my brain. "Do we go to MCG (which is closer) or to we try to go for MUSC (who was more familiar with his case)? What should I pack for him? Thank God the older kids are spending the night at Nana's.....etc" Then my brain took the course that all mothers' brains take, which is inevitably the worse case scenario. I was sure that this would mean another surgery to replace the Mic-key button, which would mean he'd have to go on a ventilator again, which meant more sedation, etc, etc, etc.
I finally managed to pull myself together after about 5 minutes to get my butt in gear. Robbie and I got dressed, he got the car ready while I packed a bag for Atticus, and we headed out the door towards MCG. Thankfully during all this craziness, Atticus was laughing and squealing, thinking that he was getting to go on an early morning car ride. He wasn't in any pain and was pretty pleasant. Thank goodness for that. I think I would have totally lost it if he was in pain or "screaming" the whole time.
We got to MCG by about 6:30 AM and went to the ER. We finally got through triage, and they sent us over to the Children's side of the hospital. Thankfully, the doctors were able to get a thin catheter in the hole, and slowly (over about 3 hrs) stretched it back open large enough to place a new Mic-key button. The process hurt Atticus and he would cry whenever they were "stretching" or finally placing the button. It just broke my heart because he was doing his silent scream (due to the vocal chord damage), his eyes full of tears, and he was just reaching up for me to grab him. It was torture....for Atticus and for me. Poor Robbie couldn't even stay in the room. He had to walk in the hallway every time they'd do something to him. He's kinda squeamish when it comes to that sort of thing. That, and he can't stand to watch someone make one his children cry. It instantly infuriates him. So he just excused himself in the hallway so he wouldn't have to watch.
Finally, at about 10:30 AM, Atticus had his G-tube back in, I had given him a little bit of formula because he was STARVING, and we were headed home. Not 15 minutes after we pulled out of the parking garage, poor Atticus puked up everything I fed him. His stomach had been empty for too long, and had just been through too much abuse. We pulled over, got him cleaned up, and finished heading home. He was passed out within another 5 minutes after that. I caught him up on some food and medicine as soon as we got back to the house, and we spent the rest of the day trying to take it easy.
I have to say, Atticus is quite the little tough guy. Other than being really hungry for the rest of the day, he didn't even shed another tear. And by today, he was back to his usual schedule. He just continues to amaze me at how resilient he is. Thanks to everyone who prayed for us yesterday during all the craziness. I'm just SOOOOO thankful that Atticus didn't end up needing another surgery after all. That alone was an enormous lift off my shoulders. I suppose can't be too mad....that was the first time in almost 15 months that we've had to make a trip to the hospital with him for an emergency. Ok, thanks for letting me vent about my stressful day yesterday! As always, keep on prayin' for us!
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