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!
Here's an update on the many procedures and appointments Ethan has had recently. Sorry it's a lot of info and lots of pictures!
Dental:
Ethan had dental surgery and had 8 caps placed! We went back to our old hospital (Rainbow) for this since that is where his dentist is based. He had to be put to sleep for this, and that proved to be much more difficult emotionally than expected. Ethan was in full panic mode and it was awful trying to get him to be sedated. Thankfully he did well during the procedure, woke up quickly and easily, and was thrilled to be able to eat lots of ice cream! He only had mild pain even though he did try to use it to his advantage for the first time by trying "But Mom, I just had surgery!" the next morning when he realized he was returning to school! I told him nice try, but he's been through way worse hahaha! At his dental follow-up two weeks later they said everything looked good and he healed up well. :)
MRI:
Ethan had his cardiac MRI a week after the dental surgery. Once again panic hit when he realized he would be put to sleep again. He tried convincing every hospital worker that came in the room to let him stay awake for the procedure. Even taking a huge dose of Versed (his happy juice) did nothing to calm him. He opted for IV sedation instead of a mask, and we ended up having to lie to him just to get him to stop panicking. We told him that he was just getting medicine through the IV to relax him and it wouldn't make him go to sleep unless he was really tired and wanted to. Thankfully that worked and he was much calmer having the meds go through his IV instead of breathing them in. The Versed apparently gives an amnesia effect, so thankfully he didn't remember much of our conversations from before the procedure! He had a much longer wakeup period after this procedure due to the Versed, but he did well with it. The results from the MRI look good and nothing was surprising with it. We will use the scans (this MRI and a previous CT) to construct the 3D heart model and 3D computer images to present his case for surgical plans.
Electrophysiology:
We had an appointment with EP and that went well. We did another 24-hour holter monitor, but don't really expect any bad news from that. Other than some random "hard" heart beating episodes Ethan doesn't complain about any beat irregularities. His meds have done well in controlling these over the years, so we've been very lucky with that! He did have one of the sensors come off in the night, but hopefully that won't mess up his results too much! We will hear the results from that probably early next week.
EKG
Snuggling with Grandma while waiting to get the holter monitor
INR:
His INR has been up and down recently due to his dental surgery. He had to be off his Coumadin for 5 days in preparation, so we had to get back to his therapeutic levels which is usually a struggle for him. This time wasn't terrible thankfully. Monday's lab draw was 2.3 and Wednesday's draw was 1.8. Our goal range is 2.0-2.5. We will do another in 2-3 weeks to see if it is still going to be in range.
Pulmonology:
Our pulmonology appointment went fairly well. Ethan is now off of his oxygen due to the fact that he is a mouth breather and wasn't even sucking the oxygen through his nose throughout the day. He would come home from school and his tank would still be full, so we decided it was pointless to lug around all day. He also had been messing around with the tank during class - chewing holes through his cannulas, banging the tank on his chair and desk, etc. Since it turned into a bigger distraction and he wasn't using it properly, it made the decision to stop much easier. He still has a constant wet cough, but his lungs are clear. It seems to be mainly mucous in his bronchial tubes, but thankfully it is not settling in his lungs now. This is most likely from his PCD and not being able to rid himself of his lung gunk properly. We are currently just treating it with chest percussions and trying to get him to cough up as much as possible since we are hoping to be able to avoid starting back up with his smart vest treatments. We will see how things go.
Neurology:
Our neurology appointment was okay. His headaches are doing well with the reduced medication so I am very happy about that! The ADHD and tics are still a HUGE issue though. We discussed his medication and unfortunately we cannot increase his meds because of the cardiac side effects. They discussed putting him on a stimulant instead, but we have done Adderall in the past and it was awful! Ethan would only sleep 1-3 hours a night the entire year he was on that medication, so we absolutely cannot return to stimulants. We are not sure what to do at this point, so hopefully some idea comes up.
Psychiatry/Psychology:
Ethan is now seeing a new psychologist since his last one changed practices. His new one has experience with Tourette's, tics, and ADHD so hopefully she will be able to help him! They are also working on independence (the child is attached to my hip), self control, and anxiety. We have seen her three times so far and we like her, so hopefully Ethan benefits from this. He really had no benefit at all from his past two psychologists, but hopefully this one will make a difference!
Microcurrent:
Ethan started microcurrent therapy. We are currently working on helping his tics, ADHD and focus. After we get established with these we will add in protocols for behavior and anxiety. The very first treatment we saw a great result but only for the remainder of that day. Ever since we have not seen that improvement, but hopefully we will be able to see some positive results as we continue with it.
Gagging:
Another issue that has resurfaced in the past six months is gagging. He was having issues with eating meat and things that were a little tougher to chew. It has progressed and now he will gag on tons of food (even soft things) and brushing teeth is a gag-fest! It now has to be mental since he will sometimes even gag before the toothbrush gets to his mouth! He won't buy food from school at all because he says he gags every time. His food intake is no longer great, but his weight is good so it must mean that what he does get in is sufficient. It is definitely frustrating, but hopefully we can get over this quickly!
Speech therapy:
We just discovered that Ethan has met all of his goals for speech and OT completion. He still is very difficult to understand, but we believe that now is mainly due to him rushing words and mumbling. In his head he has a lot that he wants to say, but his mouth is much slower at getting the correct words out. This has now led to a stutter type of speech as he tries to process his words. We are working on breathing techniques and having him think BEFORE talking instead of while talking to minimize the problems. He does well in therapy when he is focusing on it, but once he tries talking on his own and telling stories he reverts right back. Hopefully the speech therapy stuff will stick quickly and he can improve with it! :)
Occupational therapy:
He also is meetings his goals for occupational therapy so we might be able to take a break from that as well! That is good since he is in need of physical therapy and that can free up some time for that! He does love OT though and will definitely miss the swing - it's his favorite activity!
Cardiology:
Here's the hard one. Our cardiologist is moving out of state and so we had to say goodbye to him at yesterday's appointment. We are so sad that he is leaving and we are going to miss him! He has become family to us! Granted we are happy for him since he is going to be close to his family and have a great work opportunity, but still we are sad for us!
John and I during the echo
We're going to miss you!
Health wise Ethan is doing well right now. He has not worsened since our last appointment so we are thrilled about that! In fact, his BNP (heart failure blood test) improved! The docs will work on having the heart models constructed and present his case to the cardiology team/surgery team at our hospital, collaborating hospitals, and a specific surgeon at Stanford to discuss all the options. There is a plan to divide his heart to make him PINK, but it's extremely risky and they are unsure if it is even possible. Hopefully the models will give them a clear understanding and great ideas of how to help Ethan the best way possible. We would love to see him be able to be active without having to stop and catch his breath while turning blue. He is doing well when resting (oxygen sats are 70s) but once he starts activity he drops to 50s or so.
This picture was right after simply walking from Callie's softball field to our truck. By the time he got home (after resting in the car during the drive) he increased to low 50s, so he had to have been even lower at this point. It's frustrating, but hopefully we can come up with a solution for him.
Basically the plan right now is to just wait and see what the teams decide as far as surgery. We know surgery will not be in the early part of summer, but that is all we know right now. I will just wait for news as to what was discussed, decided, and planned!
Sleep:
Ethan has been sleeping so much better this year thankfully! He goes to sleep at night early. He actually starts begging to go to bed around 7pm. Granted he doesn't sleep through the night, but he only wakes up once and sneaks into our bed (usually around 4am). His teachers say he has increased in naps from the 10 minute ones he used to do, to now he is taking hour-long naps at school. He is just more tired and we find him randomly sleeping throughout the day. Unfortunately he usually wakes up once I get my camera out to sneak a picture of him, but I was able to capture a couple sleep pictures. :)
Sleep Study:
Ethan also had a sleep study done. It showed that he did not have sleep apnea thankfully, but he does snore (which I did not know). His average oxygen sats during sleep were 68% and he had a respiratory event which woke him early in the morning. They say respiratory events may be the cause for him waking through the night, but it is unclear.
School:
That will be a different post altogether. School is a challenge. Academically he does well, but needs one-on-one help because of his severe ADHD. He actually has been removed from the main class and goes to the intervention room for math and English because he is such as disruption. It has definitely helped, but still not the ideal situation. We have had some fun like field trips and class activities. All I can say is I think everyone is relieved the school year is almost over!
Museum of Natural History
Bus Ride
Summer:
We haven't planned too much for summer since we didn't (and still don't) know exactly what's going to happen with surgery. Since surgery won't be in the beginning part of summer, we will have Ethan do an activity (either golf lessons and/or karate). I also want him to take swimming lessons since he is terrified of going underwater, so hopefully that can happen too! We also plan on having Ethan sign up for the yoga program at his therapy center as well as probably doing the handwriting camp that we did last summer. The hospital is offering a camp for ADHD, but I haven't been able to find out too much information about it to make a decision. I will look into it more and see if that is something that would be good for Ethan to participate in. Callie is staying busy with her softball season and she's always interested in signing up for as many activities as possible. She plans on a few small camps this summer, a trip to New York to visit her aunt, as well as our family trip to Kentucky for firework sales. And of course we have the Cavs to watch and cheer for, and lots of Indians games to entertain us! :)
Once I hear any information about upcoming cardiology plans I will let everyone know. Right now we will just sit back and wait.
