Recap of the day

Today is finally coming to a close and it was absolutely amazing! You can only imagine the incredible emotional roller coaster we have been on - and still are on. Stressed out and worried all day, and so elated with how beautiful he looks and how well he is doing right now! Still we are very much not out of the woods yet (as the docs keep reminding me), but we are still in a much better place right now than we had expected! Thank you so much for all of your prayers and support throughout the day! They really helped us all so much today! So please keep them coming!

The next 24-48 hours are critical. We are watching extremely closely and trying to balance his meds to keep him calm and happy, but also control his breathing and blood pressure. His blood pressure is a little lower than they would like and doesn't want to come up yet, but we are watching it and it is certainly not in a danger zone right now. He is very fidgety and it is going to be a balancing act all night trying to keep him calm, but not too sleepy that he doesn't breathe enough on his own. He does love to fight the sedation meds so this might be interesting LOL! He also has a fever right now, so IV Tylenol is being ordered.

Another issue they discovered during surgery was that they had a hard time placing his TEE (transesophageal echocardiogram) tube down his throat. They questioned me as to whether he has any swallowing issues. I reminded them of all the swallowing issues of his past (feeding tube, constant reflux, multiple swallow studies) and even the most recent gagging issues with food. They are going to perform a bedside barium swallow study during his admission to make sure there isn't a stricture causing any swallowing issues. Hopefully that is not the case, but we will look and see if there is any reason for these issues he's been having.

Right now his oxygen saturations are 96-97%! It is absolutely unbelievably amazing to see him pink and looking so incredibly good! He has never hit 90% even while sedated, so this is incredible! He is currently on the ventilator (40% oxygen) so his numbers may drop after he is extubated. We are hoping to extubate in the morning, but currently he is completely dependent on the ventilator. He is taking no breaths on his own, so we will be weaning overnight and will see if he is ready in the morning to take out the tube or not. That is of course unless he fights the sedation wean enough tonight to make us pull the tube earlier, but hopefully that will not be the case!

Right now he is getting platelets since his count is at 90 and that is a bit low. He has three chest tubes and one is draining pretty well, so that is most likely the cause for needing platelets.

Please keep us in your thoughts and prayers as we go through recovery. The docs just had a big discussion about how to balance his meds to help his blood pressure and also making sure his heart rhythm is steady. He has had issues a LOT in the past with arrhythmias so that has everyone on their toes tonight!

I will update again tomorrow hopefully with more wonderful news! I am adding a handful of pics. I do want to warn you that they are post-surgical pictures. But he looks so amazing and PINK! I just can't stop staring at him! :)

I love those pink lips!

Pink fingers!

Pink toes!

97% oxygen sats! I pray they stay this good!

Dr. Zahka (cardiologist) is so excited that Ethan no longer matches his purple tie!

Great update!

Amazing news!

We just met with the surgeon. Everything went perfectly with their first plan. They did not have to resort to Plan B after all. They checked all the valves and nothing is leaking. His ventricles are separated but have the connection to be messed with later as planned. Best news...HE IS AT 100% OXYGEN SATS NOW! Granted, he is still on the vetilator on oxygen but he has never been even close to this! EVER! Docs said he is pink and we won't even be able to recognize him!! His levels might drop after turning down the ventilator but they don't expect it to be too much. Thank you Lord for this amazing outcome! We still have a critical time period especially over the next 24-48 hours, but so far it is so good. Thank you for the prayers amd keep them up! I will post pics when I get to see him in PICU.

Surgery Update 2

Update #2

Ethan is doing well in the OR. There was a ton of scar tissue that they did not anticipate so that took a lot longer to get through. He is currently on the heart/lung bypass machine where his heart is stopped so surgery can be performed. The surgeon has made the new conduit and is working on putting it in. I will post another update once the OR calls again (most likely in an hour).

Please keep praying!

Surgery Update 1

Ethan is currently in surgery.

We arrived for pre-op early this morning. Ethan was very very nervous about surgery. Since he did not want Versed (the "happy" medicine) to calm him down, we gave it to him via his nose. That way he did not have to taste it - the taste makes him gag because apparently it is horrible. He is so used to these drugs that it barely took the edge off, but at least we were able to get an IV in him.

After goofing off for a while in pre-op and talking with the surgeons, CT nurse, and child life we headed down to the operating room. Ethan panicked once he saw the operating room doors open, so we had to give him meds to calm him down completely through his IV. Thankfully that worked pretty well.

Once we were inside the OR and he was up on the table they administered the sedation meds. He still was able to fight it - the docs were pretty impressed that he was still waking up and begging not to go to sleep even with all those drugs. His tolerance is pretty high! Thankfully he went to sleep without much fight and has been doing well.

We received an update recently that they had all lines placed and were working on cutting through to his heart. He has a lot more scar tissue than they expected so it is taking longer than planned. He should either be on heart/lung bypass at this point or will be very soon.

All of your prayers and support are so appreciated! Please keep them coming for a safe and successful surgery, and an easy recovery! I will update again when I hear next from the OR.

 

 

Summer and surgery

Surgery:

This Wednesday Ethan will be having his open heart surgery. We did pre-op testing last Friday so we are all ready to go. The plan is not the exact one we discussed originally, but it is a close modification. They plan on removing his current conduit and his aneurysm. They will put in a new larger conduit and relocate it to the correct side of his ventricles. They will then partially divide the ventricles leaving his VSD with a device that can be closed at a later date. If Ethan's body tolerates this "separation" and his ventricles take on the work they are supposed to be doing, then we can go back in via a cath to completely close the VSD. That will complete his separation of the ventricles! Ethan still has a common atrium, but I do not believe there is any plan in place to do anything with that now. If this surgery is successful it should bring Ethan's oxygen saturations into the 80s! He should be able to have much more energy, and will be able to run around and play without getting out of breath so quickly! He is so excited to be able to play and have fun!

This surgery is extremely risky and has never been done before. Pieces of it have been performed by our surgeon, but this actual plan with Ethan's anatomy is completely new and fabricated by our amazing team. Please please please pray hard for a perfectly successful surgery, fantastic results, peace and calm for Ethan and our whole family, and a quick and easy recovery! We anticipate 10 days inpatient if all goes well. Ethan has never had an easy recovery after surgery, but we are really hoping and expecting that since he is so much bigger, stronger, and healthier this time it will be much better!

We also had the opportunity to see the 3D heart model that was made for Ethan! It was absolutely amazing and we were so impressed with it! It was incredible seeing exactly how his heart is constructed and actually being able to hold it in our hands!

Chest x-ray

Ethan's 3D heart model!

Standing under his sign on the Heart Heroes wall

Lung function test

Pulmonology:
We saw pulmonology on Friday as well in order to be cleared for surgery. They were amazed at how well his lungs were doing! They are actually the best they have ever been! The docs were thrilled and said that this is the absolute best we could hope for with him to go into surgery.


Kentucky:
We went down to Kentucky for July 4th firework season again. We have a fireworks company with John's brothers (Midnight Madness Fireworks). Even though we had terrible storms July 3rd and 4th that were not great for sales, we still had a successful season and are busy planning for next year's growth! We had a great time seeing so many of our family and friends!

Stopped at Grandpa's Cheesebarn on our way to Kentucky

Grandpa's Cheesebarn car

Jenna and Callie

Wesley and Ethan playing minecraft

Tanner

Wesley

Ethan

Nan's party:
We were able to have lots of friends and family over to our house to celebrate John's grandma's birthday! Her 80th birthday is actually in January, but we were able to have family come in from out of state and everyone could celebrate her in the warmth! We had a great time and once again were able to enjoy spending time with the family!

Brooklyn

Family pic

Nan, Ethan, Callie, Wesley and Tanner

Kids bday parties:
Callie turned 13 and Ethan turned 9! I cannot believe how old they are getting already! We had their birthday parties yesterday and everyone was able to come and celebrate! We loved having everyone over and it was so great to see everyone!

Happy 9th birthday Ethan!

Happy 13th birthday Callie!

Callie and her best friends!

giant birthday donut!

Birthday movie to see Secret Life of Pets!

 

Callie's ankle:
Callie sprained her ankle in the beginning of summer. She was placed in a boot that was supposed to only last two weeks. When we went back to the doctor she had not improved, but she was also wearing the boot incorrectly so they replaced it. The xrays showed that she has a bone deformity or chip in the corner of a bone in her ankle joint. If physical therapy and the boot do not help we might need to have surgery in order to repair that bone. We definitely do not want to deal with that, so hopefully things can start to improve for her quickly! She is still in the same amount of pain unfortunately, but she will start physical therapy in another week and a half. Hopefully that will help her out and get her out of the boot soon.

Ethan was excited that he wasn't getting checked out at the doctor for once!

Callie's new boot

Vacation:
Callie also was able to go to New York to visit my sister and then to Florida for a vacation at Hollywood Beach. My parents took her and she had a really great time! Unfortunately I don't have pictures from this trip on my phone since I was left behind! :(

Band Camp:
Callie also was able to go to BW Music Camp earlier this summer for her flute. She was really nervous before going, but had so much fun and made a lot of great friends during her week!

Goofing off before her concert

Callie playing her flute in the concert at the end of camp week

First time in a dorm room!

Callie set up her dorm room bed

I think that is the basic recap of our summer. Ethan loved spending time at the splash pad and park in town this summer. We also participated in the library summer reading program and Callie's softball season. We are preparing to return to school (8th and 3rd grades). I don't know how Ethan's surgery is going to affect his start of school. I am really hoping that we fly through the recovery and he will be able to start school with everyone else (obviously with some accommodations since he will be on physical restrictions still).

Please keep Ethan in your prayers. Please pray for his doctors and surgeons. We have a new surgeon, and although he comes with high praise and an extensive surgical background we still are nervous with new doctors! Please also pray for a smooth, quick, and easy recovery. We definitely are not fans of being stuck in a hospital room for extended periods of time, so that is something we are not looking forward to! Ethan's behavior and ADHD have been horrible this summer, so we can only pray for lots of patience while we are inpatient and recovering! I will mainly be updating on Facebook throughout Wednesday, but I will definitely also post some updates here on the blog. we are so thankful for your prayers and support!

Playing at the splash pad

Dr. Ethan checking Fiona's heart

Ethan loved the go-karts!

In line for go-karts

The boy loves his Starbucks!

Library summer reading party

Ethan loved having his classmates at the ball fields during Callie's softball season!