EP Study - Our Day at Children's

Here we sit, waiting for our antiquated pager to go off letting us know something...hopefully that he is done, or needed something done, or worse. Sitting in that room this morning, listening to all the different clinicians talking to us about what the morning would entail, the procedure details, the RISKS...it was a lot. Then to say goodbye to Alistair as he walked back with the aenesthesiologists, even though this is a fairly safe and simple procedure, I felt a slight tinge of panic and for just a second thought about my last words to him. My rational side of my brain knows there is nothing to worry about, but man, the heart makes sure your strings get pulled, hard! I cannot even imagine how much harder this is going to be in 2 months when we go back for the big one! Ugh!

Poor Alistair, this morning'so intake too so long. He just got more and more anxious and on many instances choked back tears...eyes up, mouth turned down, deep breath...thank goodness for his kindle and Minecraft; never thought I would be saying that! He was a trooper though, asked questions, engaged in playful banter with everyone. He tried to be too big to take Seal back with him, but I pushed and he relented. I think secretly he was glad to have his friend with him.

I still remember buying him that seal. We were walking around Holiday Lane at Macy's, he was in the stroller. He was probably about 2. We walked past a tree decked in sea life, including stuffed seals. As we continued to browse, I looked down and realized he was holding a seal and snuggling it ever so sweetly. The last thing he needed was another stuffed animal, but there was no way we were going to take away his new friend with whom he had an instant connection!

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I knew starting a blog post would make the pager go off. It has been a few hours since I started this. Alistair's procedure went well. They didn't find anything they needed to repair, which is always a concern with Ebstien's patients and they were able to confirm a few key pieces of information for the surgery team at Mayo. He did great. His heart rate was a little high during the procedure and continued to be so after they were done. As I type he is still in the PACU (post anesthesia care unit) being monitored. We still haven't been able to see him, but hoping to soon. He also is supposed to lay flat for 4 hours afterward, so hoping that time is being wrapped into the monitoring part and we might get to go home soon,

While hanging out and waiting, I got a call from Mayo. They moved up his surgery to July 10th. So that is the date, set in stone, information packet in the mail. This will make him just about 8 weeks post op to start school and will give us a large chunk of summer to enjoy recovering instead of anticipating.

We have some dates...tentatively!

It has been a busy week for lots of things, but I finally got a few things on the books. First, Alistair is scheduled to have his electrophysiology study done next Wednesday, May 20th, at Seattle Children's with Dr. Jack Salerno. We saw Dr. Salerno on rounds a time or two when Alistair was inpatient as a baby. I remember him to be very kind and comforting. It is an outpatient procedure, but it will be a very long day at the hospital nonetheless. A shout-out goes to my awesome cousin, Grete, for being available to take Gillian and spend the day with her. Gillian gets to skip school and have some fun! 

We have become aware that all of this stuff with Alistair is beginning to take a toll on Gillian. She is around when we talk about all of this and all she hears is Alistair this and Alistair that and probably too much of "what are we going to do with Gillian?!" Yikes! We need to sit her down and talk to her about what exactly is going on and assure her that we will make sure she gets to have some fun this summer!

I also finally got through to the Mayo Clinic. As of right now, Alistair is slated for surgery on July 30th. I say "as of right now" because we are hoping that we can get that date changed. There is a tiny, minute chance that there could be an earlier date. Dr. Dearani is currently on vacation and when he returns, he can speak more accurately about his schedule and if there is indeed an earlier slot. Now that we have been in this mode and discussing this for so long, we are all ready for this next step and waiting until the end of July will take so long. The bigger issue is that Alistair will only be 5 weeks post op when he starts school in the Fall. While this is not the end of the world, he will not be able to participate in recess or P.E. for most likely the first 3 weeks of school and he will still be under sternum precautions. I will be checking in with Dr. Dearani's secretary next week. Stay tuned...

They said YES!

Seems so strange to be happy about that sentence. Usually when someone says that to you, you respond with, "Congrats on your Engagement, Congrats on your New House or Job!" Not very often do you respond with, "Congrats, they want to operate on your son!" 

Dr. Lewin called today. He heard back from his colleagues at Mayo and the cardiologist and surgeon he conferred with both agree that Alistair is a strong candidate for surgery. They are very confidant that the CONE procedure would be a successful fix for him. They are also confident that they can close his Atrial Septal Defect without complication. Dr. Lewin asked me if we were still wanting to do this. We have been talking about this so much in the past few months that the idea of it not happening would have been more disappointing. I think we are all mentally prepared and are definitely ready to get this behind us! It is a scary idea and we are in no way skipping happily down this path. But, yes, we are still wanting to do this!

They did require one more exam prior to moving forward with scheduling. They want to do an Electrophysiology Study, which is a catheterization procedure and will be done in the cath lab at Seattle Children's.

The reason they want this done is to test Alistair's heart for irregular rhythms so they can be prepared for them during surgery. The procedure involves inserting a thin tube called a catheter into a blood vessel through his leg. Through this catheter they will feed electrodes into his heart. There they will record his heart rhythms and also be used to stimulate the heart with electrical signals to replicate activity that would increase or decrease your heart rate to check for irregularities in his rhythm at different rates. 

This procedure will require Alistair to be sedated and anesthetized and will take about an hour to perform. It will not require him to stay overnight, but will require a few days of rest. Probably will be done in the next few weeks.

No news on the results from his Halter Monitor yet. 

We are having a phone conversation with Dr. Lewin tomorrow night after Alistair goes to bed. So far we have learned about the mechanics of the surgery, the place where the surgery will occur and the typical recovery time for patients. But we wanted to have a frank, nuts and bolts conversation without Alistair present to really know what to expect...especially after surgery and what exactly Alistair will be experiencing and what we need to prepare ourselves to see. 

Starting to feel a little more real now...I would like to stop living in a holding pattern and I think that will be resolved in the next week or so when Mayo calls to schedule. From there we can start to plan and prepare.