If you can believe it, I am writing from the bedside at CHOP – only after one week of being discharged from the Mayo Clinic. After many appointments all week, the rhythm specialist at CHOP thought it wouldbe a good idea to monitor Lincoln overnight based on his ECG at an outpatient appointment.  As I mentioned before, the amiodarone as well as the flecanide are … Continue reading Back at CHOP

Tomorrow will be 1 month since we’ve gotten to Rochester. Lincoln has been in normal sinus rhythm since Saturday but I can’t read it. I have to take their word for it– his ECG is hard to read. Normal sinus rhythm is what we need to leave! Amioderone and Flecanide did the trick. That sounds simple but it’s not. These meds are monsters. They have … Continue reading 1 month

I’m so sad and just so tired but there have been some changes. They tried to pace Lincoln again by using the transesphogeal probe from his nose to his esophagus but it was unsuccessful. All is did was make my sweet boy cranky. The next step was to shock Lincoln. Shocking him worked   but he quickly went back into it. Lincoln now has his … Continue reading Days 20,21 and 22

 Lincoln has had – overall – good days , but he has been in and out of atrial flutter. Mostly in, unfortunately. Because he got himself out of it on his own a few days ago, they are hoping he’ll do it again. This time they don’t plan to stick any objects down his esophagus to convert him to normal sinus rhythm!  He’s been puking … Continue reading Days 17, 18 and 19

Today Scott and I got into the Ronald McDonald house and I’m so blown away by this place. We are so lucky to have gotten in. There are 28 people on the waiting list. Everyone here at RonDon is so kind and giving, I was on the verge of tears through the whole tour. If you aren’t familiar with the Ronald McDonald house, it’s a … Continue reading Day 16

We are so excited to bring Lincoln home soon, but that too comes with its own challenges. It’s so convenient having X-ray and Echo at your finger tips. What will I do when he is in an arrhythmia at home? How will I even know without an ECG? The kid is completely asymptomatic and hemodynamically stable when he’s having an arrhythmia. I’ll never be able to … Continue reading Day 15

The last few days Lincoln has really started to perk up. He is keeping us busy! We got rid of a few things since my last update which is exciting. His chest tube is out, his pacing wires are out — the only thing left is his RA line. That won’t come out until right before we leave.  Lincoln has been loving sitting up and … Continue reading Days 13 and 14

Day 12Today Lincoln’s chest X-ray was much better, we went without supplemental oxygen all day! He is moving around a ton, giving us a bunch of smiles and only needing Tylenol for pain management. Although the day was over all a good one, Lincoln’s heart went into another arrhythmia that looked like a flutter. It only lasted about an hour and he got himself out … Continue reading Day 12

Last night was scary to say the least. We left the room for a few minutes so Lincoln could have a respiratory treatment and when we came back the room was full of Docs and the code cart was in the room. This is where CHOP and MAYO differ. They don’t push the  tweeter to alert  the world that there is a code going on … Continue reading Day 11

Day 10 Today was the first time since Lincoln was born that I saw Scott in him – and it made me feel so lucky. We’re so lucky that he and I together could make something so wonderful. I know the struggles people face with fertility, and although we certainly have our struggles, fertility was not one of them — for that I’ll forever be … Continue reading Day 10