A Very Hard Day

If you had asked me this morning how the day would go, I would never have guessed how it went. It started off so well. We got Alistair up at 5:20 as he had to take a shower and wash with antibiotic soap. When we woke him up, he stretched and sighed and then he realized what was going on and said, "Oh...BOO!" Once we got out the door, we arrived at the hospital, got checked in, and walked to the waiting area. Seth and I accompanied Alistair to the pre-op area, picked out a scrub cap (they had one with vintage airplanes) on it, he asked for one for Seal, got Alistair into pj's and into bed. They then proceeded with a barrage of questions for us and asked Alistair if he wanted something to calm him. They came back with a syringe of a mix of tylenol and a slight sedative that was meant to make him drowsy and a little loopy. Drugged out Alistair was actually a good comic relief. He decided earlier in the week and had reiterated many times that he wanted to go back alone and didn't want Seth or I to accompany him. Even in his drugged out state, he still insisted that he, his animals and the nurse were the only ones to go back. Grandpa and Grandma got to come back and join us for a bit before he went back. When it was time, we told him we loved him, kissed him and told him good luck. The nurse snapped a photo for us, which was nice!

We went down to the cafeteria for some breakfast. It was fine, nothing too exciting, but good to get some food. We then headed to the waiting area. Seth and David worked on tablets or read while Judy and I worked on a baseball history themed puzzle. The nurse would come out from time to time to update us on the status of surgery. After he was taken off bypass, Dr. Dearani spoke to us to tell us how the procedure went. He said it all went well, the Cone Procedure was a successful repair and they were monitoring his rhythms because they were a little irregular, but were hoping they would normalize soon. With that news, we headed out for a bite as we still had a couple of hours before we would be able to see him. 

When we returned and were heading up from the parking garage, Seth received a call from the Charge Nurse who was frantically trying to get a hold of us. We met her by the elevators where she took us to a consultation room. She proceeded to tell us that things had rapidly declined with Alistair. After surgery they got him stable and brought him to the ICU. Within minutes of getting him there, Alistair coded because of the strain on his heart caused by the irregular rhythms and his stressed out ventricle. He went into cardiac arrest and needed to be resuscitated via CPR and cracking his chest to manually massage his heart. The blessing in all this was that the entire OR team was still around, including his surgeon and they were able to respond instantly. The surgery team placed Alistair on ECMO (heart/lung bypass) and returned to the OR. Dr. Dearani performed a Glenn Procedure (bypassing his heart and connecting the superior vena cava to the pulmonary artery). This means the blue blood from his head, neck, and chest is gravity fed and doesn't go through the right side of his heart. This greatly reduces the amount of work his heart has to do. After this his cardiac rhythms were much much better. His chest is still open with a sterile dressing, which means his skin isn't stitched up and his ribs aren't tied together yet but are closed. He will remain on ECMO until it's safe to remove it (anywhere from 1-4 days, hopefully on the short side of that) which means a return to the OR and will remain open for another day after that (another OR trip to perform the suturing of his ribs and skin). The surgeon said we get to do one thing to him a day. If we progress too quickly that's when you run into trouble.

We finally got to go see Alistair around 6:15 or so. He didn't look as bad as they made it seem. He has LOTS of tubes and wires coming out of everywhere. He is a little puffy from the trauma to his body and the build up fluid. They will be working on draining that off of him slowly. He will probably be asleep all weekend, we won't have any conscious interactions with him for a few days.  

Today has been awful...I think it officially has been chalked up as my worst, probably Seth's as well. By the end of the day we were both just emotionally drained. Nobody slept well last night so we are all exhausted and stressed beyond belief. Seeing Alistair and getting to touch and kiss him made me feel much better. We have a tough weekend ahead of us, but I think by taking it one step at a time, it will be mostly steps forward.

Meet Zebra. Zebra has been with Alistair from the beginning. He is his most precious animal. His ears are worn from Alistair rubbing them and his neck could use some support, but he has been through thick and thin with Alistair. He sat and watched over him when he was a baby in his isolet and now he is keeping an eye on Alistair while we go home to rest.

Seal is also with Alistair and helping Zebra keep an eye on Alistair for us! He even got his own scrub cap!

Last day with a Heart Condition...

Alistair impresses us in many ways. This countdown he has come up with to countdown until his surgery was all his doing and wording. It displays to us the fact that there are glimmers of understanding and optimism inside the kid who verbalizes mostly concern and negativity. Of course this is a natural reaction from someone who is staring down the barrel of a major surgery. We sat down to breakfast this morning when he told us one more day. By this afternoon he was blaming us for not doing something about this when he was a baby or even as far as for having him in general. The hospital environment draws out the most negativity. When we get home to our stuff and the ability to watch TV or do Minecraft (escape), his optimism and rational understanding returns. Needless to say, we have been riding a pretty emotional roller coaster today with him.

We started the day with a big breakfast filled with all the things Alistair enjoys. After breakfast and after he got to remove his Holter Monitor, we took Alistair to the YMCA (not nearly as nice as ours!) to go swimming. It was fun until the summer camp infiltrated the pool, then we felt squeezed out and left.  But I think he had fun and it was something he really wanted to do. No more swimming until the end of August! 

After we showered and ate lunch, we headed to the St. Mary's Campus of Mayo where Alistair will have his operation and will be staying. We first met with a social worker who seemed a little taken aback by his "Fan Club" (Seth's parents came with us since they are going to be part of everything too). I think we were far too educated on the subject at hand and processing it in a healthy manner that she seemed to be fine handing us off to the Child Life Specialist for a hospital tour within 10 minutes of our appointment! The Child Life Specialist went over some of the more detailed aspects of things Alistair will experience while still conscious in the OR. Then we went on a tour of the ICU, the patient rooms and the activity room. There is Bingo on Tues and Thurs where Alistair could participate from his room via CCTV if he chooses. There are video games in the activity room and there are therapy dogs that come around...which Alistair for sure wants to partake in!

After our tours ended, we headed to a consult room where we met with the big guy - Dr. Dearani. He was such a nice man and did a great job explaining everything in great detail. He illustrated on the drawing above how Alistair's heart is now versus how it should be (the actual drawing) and how they are going to fix it. But the shit got real...too real for Alistair and after crying for a couple decided to take a walk with Grandpa. The rest of us stayed and listened and asked questions until we ran out of them. He was patient and informative and reassuring. But he talked about a lot of scary situations and prepared us for things that could happen. He thinks Alistair will probably be on a vent through Sunday, which means he will be out of it until then. He thinks Alistair will probably be in the hospital for 7 days, which is what I was prepared for. He also mentioned, depending on how his body reacts, there could be a small chance that Alistair's chest will be left open because of swelling and will be closed in a day or two, depending on when the swelling goes down. The chance is small, but he mentioned it because if it happens he didn't want us to be caught off guard.

We are back at the house now. Alistair requested lasagna, garlic bread and salad for dinner (some of us might have a little wine too). I need to call in a few hours for the time to be at the hospital. I expect the sleeping in the house tonight to be spotty at best! 

We will do our best to post updates tomorrow. I will certainly do a blog post at the end of the day. I will update on facebook as I can. Thank you to EVERYONE - we truly are blessed to have such wonderful friends and family everywhere. It is comforting to know so many people are pulling for our son and holding us in their thoughts and prayers.  

Early Mornings, Doctors and Lightning Bugs

Our day started early today. 5am came too quick. Seth and I were up and at em pretty quick as neither of us slept well and were already awake. We had to wake Alistair from a very deep sleep and it still took him a while to really come to. He fell asleep again while driving to Rochester, which was good since he was in for such a long day!

Once we arrived and grabbed some breakfast, we went to find our first appointment - blood draw. I was not looking forward to this because Alistair has notoriously been a hard stick and I used to be one...he takes after me in that department. It took two very long tries before they were able to get what they needed. It was not very fun to watch and having been in his shoes, really not fun for Alistair. Then we went to his Chest X-Ray. That took 2 seconds as he is an expert on assuming that position! After we finished the appointment and were waiting for the next, Alistair told us he couldn't have anymore x-rays because he would have metal in his chest after his surgery. Seth informed him that although cannibals would now have to only slow cook him and not microwave him, he could still have x-rays. We all laughed...phew, humor is still intact!

The next appointment was his Echo. Alistair has come to enjoy these procedures as it means he gets to lie on a bed in the dark and watch a movie. We enjoyed the first half of Despicable Me 2, a movie we have seen multiple times. I am sad we won't get to go see the Minions Movie this weekend as our family loves the minions, as silly as they are! After his echo, we wandered downstairs for his EKG and then he was fitted for a Holter Monitor - not so thrilled about having to wear it for 24 hours as he was hoping to go swimming tonight. We will make sure to get that activity in sometime tomorrow. 

We left the hospital and grabbed some lunch. Then we headed to the house we are renting while we are here and checked in. Seth's parents arrived shortly after us and we all moved our stuff in. Alistair claimed the twin bed room and has made himself quite the little nest...it even has a TV in it as well as a couch (chair and a half). Alistair has been wanting a couch in his room for sometime, so this is a dream come true. Unfortunately it will be short lived as he is only here 2 nights. 

Alistair's afternoon appointment was with Dr. Johnson, a pediatric cardiologist at Mayo. He was very nice and chatty. After a few minutes Alistair interrupted him and asked if we could get on with the appointment! It think he was ready for his day to be over! The appointment was more or less an opportunity to talk in-depth about the procedure as well as the following days in the ICU, Step Down Unit and Floor. Some interesting and potentially scary facts I learned was: Ebstein's is EXTREMELY rare. Seth asked Dr. Johnson how common is Ebstein's and he said not very, most cardiologists only see it 1-2 times during their careers!! He also explained the need for the procedure in a different way than I had heard. Basically if Alistair didn't have this procedure while he was young, his heart would continue to stretch and grow and enlarge as he grew and he would eventually have no choice but to have a transplant. Dr. Johnson was very reassuring that this procedure was very safe and successful and that we are in the best hands we could be in as far as surgeons go. People come from all over the world to see Dr. Dearani, He also made it sound that Alistair, although in some varying degrees of discomfort, should bounce back fairly quick and will be wanting to do stuff way before we want him to! 

Alistair did very well today. He got teary this morning for the blood draw and was fighting back tears this afternoon off and on as we discussed the impending event. But once we were home from everything, he perked right up. He and Grandpa found the Mariners game to watch (they lost) while Seth, Judy and I went grocery shopping. Then after dinner we went to Flapdoodles for ice cream; Alistair had read about it in a Rochester Magazine he found in the waiting room. He thought Grandpa would enjoy it!  

When we got home, Alistair noticed lightning bugs in the next door neighbor's yard! Pretty cool thing to see if you aren't used to them!

Meanwhile our little blondy got to stay behind and hang out with the Sandholms! Gabe, Ranae and Sully are gracious enough to host and entertain her while we are down here. Gillian has made a new friend, Atlas. Gillian LOVES him!

Today's adventures for her included a bike ride to Lake Harriet and watching a friend of Sully's fish. Apparently she likes to handle the minnows! That's our girl! 

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!