And the Journey Begins...

"Last time in Washington with a heart condition" was Alistair's comment as we walked into Sea-Tac airport this morning. He is excited to see his buddy Sully and that's about all he has mentioned. I think his attitude it okay right now. He slept pretty well at Nana and Papa's after a week of sleeping in a cabin or outside with his camp friends. Part of me thinks we should get him caught up on sleep and well-rested, but then I think that he will have plenty of time for that after Friday! Not that we want to string him out, but there is also no need to adhere to strict bedtimes!

In talking to people, it is weird to talk about why you are traveling. People are going home, some are going to visit family, we have a bunch of soldiers on the plane who are going to some National Guard station in the vicinity. "Business or Pleasure" is the usual question. Not sure how to answer that one. "Well let's see...pleasure for a few days, hell for a few days, a constant state of worry for a few more and then pleasure for the last few." 

It is getting much more real. Seth is already worrying and feeling stressed. I like to focus on one thing at a time. I stressed about getting through security and onto the plane. Then I will stress about getting to Rochester on Wednesday morning at o dark thirty. Then I will stress about getting to all the appointments and trying not to be overwhelmed with all the information. I think the major stress will begin Thursday night when we call to get his surgery time for Friday morning and what time we have to be at the hospital. I anticipate not sleeping that night and having a large pit in my stomach. 

We are looking forward to the next few days and hanging out with the Sandholms. Alistair and Sully ran to each other with open arms and hugged when we got to baggage claim! It was very cute!

As a side note, we had a great Fourth of July! We spent the day at my parent's house on Fox Island. They picked Alistair up at Camp Colman for us so we could spend the morning wrapping up our house and closing up shop for a couple of weeks. Lots of people came out to the island during the day to say Hello and send us off with good luck! The kids got to meet their newest cousin and we managed to get them all to sit in the same spot for a couple for a photo op! I have to say we all make pretty cute kids! 

Final Countdown

We are within single digits of leaving for Minnesota. We had all these events that were happening before we went to Minnesota: end of lacrosse season, his birthday, camping trip, Mariner's game, Seth and I climbing Mt Adams...like they were helping keep the inevitable from arriving. Alistair is at Camp Colman this week, the final event that was providing that buffer. His last hurrah, if you will, for unadulterated fun without the fear of harming his healing chest. The rest of the summer will be spent building up strength and stamina while protecting his vulnerable chest. Slow and steady will be the theme...which isn't always a bad thing in the summer!

Lots of people have been asking about addresses to send stuff to Alistair. We have 2 separate addresses you can use. One is the hospital, which he gets mail delivered daily. If it gets delivered after he has been discharged, they will forward all mail to our house. He will be admitted on July 10th and will be there most likely though July 17th, but you can check his progress and know through the blog! The other option is to send it to Seth's Aunt and Uncle (you can send anytime, even before he is in the hospital!) who will either bring it down to us while we are in the hospital or will save it for Alistair to open when we arrive back at their house to stay after we are discharged until we leave on the 21st of July.

Mayo Clinic, St. Marys Campus

For Patient Alistair Hennessey

1216 Second Street SW

Rochester, Minnesota 55902

or

Alistair Hennessey

c/o The Dvoraks

9090 Parkside Drive

Woodbury, MN 55125

Seth and I will also be available by emails and texts, if you wanted to send wishes to him via us! We would also love to hear from people, whether it is checking in on us or telling us about your lame day at work! Help us stay connected with the rest of the world while we are so focused on our tiny little one! Or you know, just provide some comic relief or the ability to talk about something other than medical stuff! Seriously! :) 

5 more days until we head to Minnesota...breathe, breathe...

Leaving on a Jet Plane...

We finally bit the bullet and bought our plane tickets. Ouch! Well, it would have been more of an ouch if someone hadn't given us their Companion Fare for Alaska (Thank you Shelli!!). We used their coupon for 2 of us and ours for 2 of us and it saved us about $800! So now we have a place to stay, a way to get there and now we wait. 

I find myself wishing it was still the end of May. June crept up and now it is racing by! Next week is the last week of school. Wait, what!? No, that can't be! I feel ready for July but I don't want it to come. I feel like it is going to be that one part of the ride that you really don't like but all you can do is close your eyes tight, hold on to the railing as hard as possible, hold your breath and wait for the moment to pass where you can once again open your eyes, relax and enjoy the ride. I might feel that way by Monday, July 13th...or once he is moved out of the ICU and is doing and feeling better. 

We watched a movie this weekend that the Mayo Clinic sent about your child's experience and what to expect. The day of surgery, when it is time to go back, only one parent is allowed to go into the OR with your child and stay with them until they are asleep. Ugh, I just keep imagining that moment when he is wheeled away from us..THAT is the part of the ride that will be the worst! Even writing about it now is making my heart race and I feel a little panicky. 

We just need to get through and enjoy the next few weeks. We have the end of school, a camping trip, a Mariner's game and Alistair & his buddy Levi are going to overnight camp for a week! Then we gear up and head to the Midwest! 

The Package Was in the Mail

When I last spoke to our contact at the Mayo Clinic, she mentioned she would be sending us a packet of information. Well, it finally arrived on Saturday. It was in the parcel box in our mail box center because it was probably about 2" thick! SO much information!!! After the letter explaining what was enclosed, there were 7 pages of appointment times and explanations of the appointments with the last being his surgery on July 10th (top right). I have to admit, I felt a little sick after reading all of that. This just got real! They also enclosed many pamphlets and booklets on pediatric care and surgery preparedness, guides on helping your child understand what is going on and a video about being in the hospital and what to expect. There were also 6 medical studies with our surgeon being one of the primary publishers (bottom right) on each of them. I am fairly confident we will be in good hands!

I did get a chuckle out of this particular page:

He doesn't work for anyone, but his job is being a child! :)

We are starting to make plans for heading to the Midwest. We have found a house to rent that is 2 blocks from the hospital. It will make shift changes and visiting easy and will also give us a way to stretch our legs. I am keeping an eye on airfare. I really resent the prices we are looking to pay for flying ONLY halfway across the country. I am being a hopeful optimist that I will catch a fire sale on airfare. If anyone has Alaska miles they aren't going to use and want to donate them...we would humbly use them! 

So far Alistair is taking this all in stride and keeping an optimistic attitude. He has a drop in positivity once in a while where his fears and nerves get the best of him. But he pops back up fairly quick and we are back to focusing on the afterward. Last weekend Alistair told Grandma that he wanted to write a letter to the Mayo Clinic to tell them they were stupid and it was his heart and he can do what he wants with it! Then Saturday he was chatting with his teammates between games and one of them told him he needed to work on his speed during the off season and Alistair said, "You know why I am so slow? I have a heart condition. But I am having surgery this summer and then it will be fixed and I will be all good!" 

He is also good at regulating how much information he wants to get. Much like when we were doing intake for his catheterization procedure and he slipped on his earphones and played Minecraft on and off as he felt he needed to tune out, he also lets us know when we need to stop talking about it at home. He is certainly eating the proverbial elephant one bite at a time!

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!

                                                                                  .   .   .

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.