Wednesday, August 28, 2013

So we're what?

Ever since we were discharged, I've had this nagging feeling that they had discharged us too early, that they were going to realize it was a fluke and readmit us. It's hard to explain, except that it felt too good to be true. But today Bodie had a cardiology appointment and it was a good great one. And I started to feel, just a little, like Bodie might do ok with this new Fontan physiology and we might just be ok. But just a little, because you know, I wouldn't want to jinx us. 

His cardiology appointment was fantastic. His heart function was better even than before the Fontan, he had NO tricuspid regurgitation and no fluid buildup whatsoever. We were able to start cutting down on meds, which is music to my ears, considering he came home from the hospital on 7 meds given at 4 different times of day! We're dropping the middle of the night dose of Sildenafil (no more setting my alarm to get up at 1:30! Hallefriggenlujah!) and going up a bit on the daytime doses to compensate. And we're dropping one of the diuretics! Yay! We go back to see Dr. Kim in 3 weeks and, assuming he's still looking good, we'll drop the 2nd diuretic and cut the 3rd in half! 

His sats haven't been great, but she's ok with that. Apparently, it's a function of him having a fenestration and adjusting to his new physiology. She fully expects his sats to come up over time, which was a relief to hear. All in all, a wonderful appointment and a huge step forward to settling into life post-Fontan. 

So now what? We're currently 2 weeks out from the Fontan and a week and a half out from the pacemaker placement. Which means we need to keep him in isolation until next week, and observe sternal precautions for 4 1/2 more weeks. We've been taking him places when we our schedule necessitated it, but haven't gone out of our way to have him be around others. It'll be fun to let him get back to the world he knows and loves.

What are sternal precautions? Essentially, Bodie's sternum has been wired shut, but still isn't fused back together. So, even though Bodie looks like his usual strong, all boy, self, he's more fragile than you think. It wouldn't take much to make that sternum separate. So, we have to be careful (and do what we can to make sure he's careful as well) during that healing process. Which means we can't pick him under the armpits for 6 weeks post-op. UGH. So how do we pick him up? We scoop him up, like a newborn baby...except that he's 33 pounds! It's a bit tough on mommy's back, for sure! But we're getting used to it. It also means he can't hang from monkey bars or climb on anything high. Which means no parks or jungle gyms. Or parties where any of that stuff is present. And no swimming or regular baths until his incision and chest tube sites have healed completely (meaning the scabs have all fallen off). Lots of restrictions for little man.

We're thrilled to be post-Fontan, but Bodie's still fragile. We had 3 of our Fontanning buddies readmitted to the hospital yesterday alone, so I am regularly reminded of just how fragile Bodie is and how the threat of readmission looms for some time post-op. We still need to be careful. And the rest of us are still in recovery from all of the emotional leadup to the Fontan. It was MUCH MUCH harder than I expected - lots of anxiety, stress and worry. Life was kind of put on hold for a good part of the summer. So, we're incredibly behind in everything at the moment. And life is full speed ahead with Bodie having at least 1 or 2 doctor's appointments a week (3 this week alone!) and Sierra going back to school next week. Life is settling back to normal, but we're still in catch-up mode and likely will be for some time. 

So, for those of you who have been helping us - by bringing dinner, babysitting the kids, sending them gifts, THANK YOU - we need it and appreciate it more than we can say! Please know that, although our life looks pretty normal at the moment, it's a facade. ;-) We need your help now every bit as much as we did when Bodie was inpatient. ;-) THANK YOU for loving us and helping us!

As you think of our family in the weeks ahead, we'd appreciate you keeping us in your prayers:
1. Pray that Bodie tolerates the diuretic wean, and we are able to get him down and off the meds.
2. We have been having incredible difficulty getting Bodie to take his meds the past few days. He is so afraid he's going to throw them up that he's now refusing to take them and gagging the second we put them in his mouth. He has always been phenomenal at swallowing meds, but he threw up a couple of times in the hospital and is completely freaked out now. We're all getting really frustrated at this point - it took 45 minutes to get him to take his meds tonight. PLEASE pray that his mind calms down and he stops being afraid of his meds. We need our easy pill taking boy back!
3. Please pray that Bodie continues to get stronger each day.

Bodie sleeping tonight. I'm not sure I'll ever get used to those pink lips!!!


  1. I LOVE his pink lips!!! So great!!! Glad to hear things are going well and keeping the prayers coming for a continued smooth recovery for Bodie!! :)

  2. Hi Bodie, I'm glad you doing so good. Hey buddy! You need to take your medicine. Mister George has to take a lot pills everyday too! Everytime I take my pills I will pray that you will have an easy time taking yours. Okay?

    Love you,

    Mister George

  3. sorry your having issues with him wanting to take his pills...hope that gets resolved soon! If I wanted to send you guys something for the kids where would I send it?