Cardiology

Sorry for the lack of pictures - I just wanted to get out today's quick update.

Today Ethan had his cardiology appointment. We discussed a lot of what has been going on with him lately. Overall he looks good physically. He is growing well. We discussed how well his cath went and how happy and surprised we were that his left pulmonary artery was not clotted completely!

We are trying to figure out the best plan for him currently. The doctors will be discussing their ideas with Ethan and trying to see what the best next step is. Right now we plan on the next step being open heart surgery to replace his conduit. He has outgrown it and he needs a bigger one to replace it. However, obviously the bigger he is the larger size replacement he can receive. The larger replacement he can have, the longer it will be until that is outgrown ad needs to be replaced. However, we don't want to wait too long and have Ethan struggle longer than necessary.

There are so many risks to surgery and we have no guarantee of what the outcome would be. The doc is also concerned that when we replace the conduit, it will allow more blood flow to his lungs. However, it may be too much flow and that could cause problems as well. His body is used to the limited supply he receives right now, so any change we make causes so many other issues that we would need to deal with afterwards. Those concerns are making us want to wait as long as possible for the surgery to be done.

However, Ethan has been displaying a lot of issues for quite a while now. We were hoping the cath would have improved him, but we haven't noticed any change from that unfortunately. He struggles so much with activity. Simply climbing the stairs, shooting a couple baskets, or walking around for a few minutes wears him out so much and leaves him out of breath. We (family and doctors) want him to have the best quality of life possible, so we're trying to figure out when to intervene. Our desire is for him to be able to run around, play, and not wear out so easily. But of course the risks are great and we are struggling with the timing of when to try and do something to help him.

As the doctor put it today, if we wait another year to do surgery and he has oxygen sats in the 80s, is running around, and feeling great afterwards; then we would feel terrible that we let him struggle for longer than necessary. However, the other side to that is the thought of something bad happening when surgery could have been postponed. With Ethan nothing is straightforward and he has always had extremely complicated procedures. We just don't know what to expect from him and that's causing a lot of unease.

The plan right now is to see how Ethan does while wearing oxygen throughout the day. He hates it so that is going to be a huge struggle. We'll have him wear it and see how he feels and behaves during his daily activities. If he improves, then maybe that will buy us some more time as long as he's comfortable wearing it around. I know he hates it and especially hates wearing it in public, so I'm not quite sure how that will go. Hopefully he'll cooperate and feel much better with the oxygen on.

We have our next appointment in three months. At that appointment we'll do our blood labs, echo, EKG, and a 24-hour holter monitor. We should also have a better idea of how he's feeling and what needs to be done at that point.

Ethan has an upcoming psychiatry appointment in two weeks. I need to schedule his school IEP meeting since I haven't heard from the school about it yet. We only have a few more weeks until school starts, so we definitely have to get this meeting done soon!

Please keep us in your prayers for Ethan to wear his oxygen without a problem, and that he feels better! Also he's been having these little anxiety issues very recently. Whenever he smells anything that reminds him of his cath he gets extremely nervous/stressed. This happens when he smells bubble gum (they use bubble gum chapstick to scent the mask), plastic tubing (like his oxygen), and sometimes just random smells as we're out in public. Please pray that he remains calm and doesn't continue to have these procedures haunt him!

I will keep you updated as we progress to the start of the school year and if anything comes up with Ethan. Thanks for all your prayers and support!

Pulmonology and birthdays

First we can start off with a medical update.

Ethan hasn't had the improvement we were hoping for after his cath. He is still tiring easily, sats are remaining in the low 60s and dropping to low 50s or lower when doing activity. We met with pulmonology on Tuesday. They have determined that his issues are not lung-related. It must still be a cardiac problem. We see Dr. G (cardiology) next Thursday, so it will be very interesting to hear what he thinks about this. We had really expected the cath to change things, so we'll see what he thinks we should do about everything. Pulmonology was concerned enough over his low sats that they sent cardio an email letting them know what's going on.

He's had multiple rounds of blood work since discharge!

He was so blue and exhausted after riding for only about 10 minutes!

We've been able to spend a lot of time in the pool since it's been so hot lately!

 

 

 

Ethan finished up his social and handwriting camps this week! He did a great job in them and has learned so much! His conversation skills have improved tremendously and as long as he takes his time and wants to put effort into it, his writing has improved so much too! The problem is going to be his desire and the fact that his teachers will not want him to take the time he needs to form his letters correctly. I have a feeling his old chicken scratch is going to reappear when school resumes!

We had to go to the eye doctor to have Callie's glasses fixed. While we waited Ethan had fun trying on some options LOL!

We also were able to celebrate both Callie and Ethan's birthdays! Ethan's actual birthday is not until this Sunday, but we celebrated a week early to have a combined party with Callie. :) The kids were inundated with gifts! They have been so busy playing with everything (lots of Legos and stuff) as well as money/gift cards to make multiple shopping trips already! Callie also found out that my sister is taking her to China this October! She is so excited!

Fiona was "helping" Callie eat her birthday donuts

Happy 12th birthday Callie!

Delicious Minion cupcakes!

I was finally able to hold my newest nephew, Kino! :)

Callie and Ethan with their cupcakes

Kino snuggles

Callie and Ethan with their Cavs themed cake!

Minecraft sword

Map with a heart on China

I just wanted to send out this quick update about this past week. I will update again next week with the news from cardiology. Please keep us in your prayers. We have a lot going on right now (just sold our house and working on the start of our new house build). Please keep Ethan in your prayers. He hates wearing oxygen even though I'm sure it would make him feel so much better throughout the day. Please pray that we can figure out what's going on with his body and find a good and easy way to help him. I'll keep you all updated!

Ethan falls asleep on me often while I'm working!

 

 

John, Fiona and Moose

 

 

 

Cath #16

Yesterday morning we woke up at the crack of dawn to head downtown for Ethan's 16th heart catheterization. We were pretty nervous about this one since it was the first time ever that our cardiologist (Dr. G) was not going to be performing his cath. Thankfully his new cath doc has been preparing for the past couple years and has sat in on his past four caths. That helped us feel more comfortable with the change.

Ethan was incredibly brave for his procedure! He was very scared and has been so nervous about this for weeks. He did not want to take the Versed (medicine that makes him completely loopy to keep him calm and happy before his cath). I was amazed at how well he did! He walked himself into the OR and sat up on the table without any problems. He was nervous, but didn't whine or cry at all! He didn't want to lay down on the table to wear the anesthesia mask, but he sat, put the mask on, did his breathing, and went to sleep with no problem. I was amazed!

Mom and Ethan before the cath

Callie & Ethan goofing off in pre-op

Ethan on the operating table

The docs were able to gain access through his neck and right groin as usual. They found a lot of narrowing in all of his stents and one area that has not yet been stented. His conduit had significant narrowing, but they were able to balloon open each site successfully. She did not want to be too aggressive especially in his conduit due to his past history of tearing, but still she was able to open it up more. He did have an episode of tachycardia. The docs decided to shock him to put him back into a good and safe rhythm. Other than that episode he apparently had no issues throughout the procedure! He went back to the OR around 8:30 and we got the call that he was finishing up around 3pm - that was the shortest cath he's ever had! He finished up amazingly with no bleeding issues (thank the Lord!) and extubated without a problem!

Typical big sister!

Getting ready to wake up :)

He's awake!

Family relaxing in recovery and Ethan has his new Lego set :)

In recovery he woke up and asked if his cath was done. We told him yes it was all over and he said he was so happy! He was in and out of it for a while, but woke up enough to have some Sprite and applesauce. We went upstairs to our room for the night about an hour later. Wow, that was an adventure. We had a HORRIFIC roommate when we arrived! The family was absolutely filthy - food and garbage everywhere, used bandages and tissues all over the floor, hair EVERYWHERE, blood was all over the place, and it smelled terrible! I was appalled! We realized that the roommate's family had been sleeping on Ethan's bed before we got there. There was blood, hair, and *hopefully mud* on the sheets. Thankfully he was still wrapped in the sheets from PACU so he wasn't touching any of the new bedding.

The kid was also a nightmare. He was spitting on, hitting his nurses and respiratory therapists, and shouting out plenty of insults to them. The family spoke barely a word of English, but apparently the kid knew some insults! I was shocked especially at the fact that his parents seemed to just laugh at his actions!

Our roommates finally left around 7:30pm and the cleaning lady came in. She had to request extra time for the room (she spent almost a full hour cleaning!). After the room was nice and clean, Ethan had eaten, and our nurse came in to do his 9:30 dressing changes. He had to lay still for 6 hours post-op so he was very happy to have his bandages removed and be able to move around. His nurse was great and he tolerated it really well. :) Then it was time for nighttime meds. We decided to have him take Tylenol just to make sure he didn't wake up in pain in the night. That was a mistake! Apparently the hospital Tylenol tastes much different than what we have at home! Ethan gagged on the taste and threw up all over his bed. :( Good thing it was time for new bedding anyway! We got him cleaned up and fresh bedding, and he was much happier. :)

At this point we were exhausted, but we heard the news to prepare for a new roommate. :( NOOO!! Ethan had already passed his short window of sleep time (once he is tired he needs to go to bed. Otherwise if he stays up even just an hour later he will struggle falling asleep all night!) That was happening today. He decided it'd be a good idea to walk the halls since he'd been cooped up for so long. He did great on his walks, chatted with everyone he saw, watched some babies sleeping at the nurses station, and showed everyone his new Lego portapotty! I finally convinced him to come back to bed and try to get to sleep. Once we were all settled the new roommates arrived. It was around 11:30pm at this point. They were very nice, but the room lights were on full, all the docs and nurses had to come in and discuss the problem and get them situated, the kid hadn't eaten so he ordered food, and then proceeded to watch TV until around 2am! Thankfully they finally shut things off and we were able to fall asleep. 4am we were woken up for vitals and then again at 5 for an EKG. Thankfully Ethan was able to fall right back asleep after these interruptions. Then as usual, Ethan was awake and ready to go at 6:30am. We took a short walk and made some toast at the snack station. Then we were called down for an echo and that looked great! We spent some more time in the room watching TV, playing Legos, and eating breakfast. Then we went downstairs for our final test of the day - x-ray. He did great and was excited when the x-ray tech let him look at his pictures on the screen! Once again every doctor and random person we met in the elevator, etc was shown the Lego portapotty! LOL!

My phone died that night and I realized I did not pack my charger! :( Sadly I don't have nearly as many pictures as usual, but at least I took some before it was completely gone!



Working on Legos in his room with his Beads of Courage hanging behind him

Such a good boy :)

After a short time back in our room cardiology came in and discussed the cath again. We were then told that we can be discharged and we'll follow up with cardio in the beginning of August! :) YAY! Discharge took a little longer since we were dealing with getting information for our oxygen company switch. Our current company is no longer accepting our insurance, so now we have to find a new oxygen supplier. I have to have our old one send out his medical need paperwork that they have to give to the new company, and then hopefully it will be an easy transition. Then we had the IV pulled and final bandages removed. We were discharged around 11:30am, grabbed some Starbucks on our way to the parking garage, and headed home! We were so happy to be out of there so quickly!

YAY! Going home!

I was so thrilled with how friendly and easy-going Ethan was through the entire hospitalization! I was so proud of him and his great attitude definitely made a hard situation so much easier! :)

We made it home and went to lunch with Callie and John. Then when we came back home the kids relaxed while I caught up on some work, cleaning, and unpacking. Ethan fell sound asleep on the couch since he was so exhausted. After a nap, dinner, checking his bandages, and getting cleaned up he went right to sleep. He had a great night sleep and woke up feeling great in the morning! He was having some neck pain, but that is common for him with the neck access they do for his caths.

So tired!

Overall, his cath went very well. They did not place any stents, but they did have to balloon every single one that he has. He had growth and narrowing on the inside of each stent. They also successfully ballooned an unstented area that had narrowing. The cath doctor said we should hopefully see some improvement in his numbers in a couple days once the contrast and everything is out of his system. So far we haven't seen an improvement, but hopefully it will come. He was still ranging mid 50s-mid 70s without oxygen after the cath and when we returned home.

We are so thankful to everyone for all their prayers and support through this! Please keep Ethan in your prayers that his oxygen sats do improve and he continues to recover quickly and easily! I will be updating again very soon with how he is doing as well as information from our Kentucky trip over July 4th!

School's out for summer!

First off, Ethan has been improving so much medically this past week! He had about 5 "episodes" of heavy breathing since the increase in his inhaler. Even those though were much milder than they had been in the past! And actually he has gone 4 nights in a row now of no oxygen!! We are still on track for his cath July 8th and he is still scared, but we're very happy with this improvement right now :)

It's been a hectic week! The kids have been really enjoying their last week of school!

Callie had a wonderful field day with sun and temps in the upper 80s! They had a lot of fun!

I went to Ethan's the following week and we froze! He had cloudy weather with temps in the mid 40s! Brrr! I went to Ethan's field day to watch him and make sure he handled the activities without a problem. He took a few breaks, but tried all the games and had fun! One of his best friends, Cadence, came up to meet and said "Ethan is so funny. He tries sooooo hard! I mean he just tries sooo hard!" She was so serious and it just made me crack up! She has been a great friend to him this year!

Ethan talking with Jayden and Christopher. Cadence is in the front ready to run

Ethan and one of his best friends (Jayden)

Ethan doing the obstacle course

I left after the kids got their ice cream treats and headed back inside for class. I received a call from the nurse a couple hours later saying Ethan finally pulled his tooth out during lunch! That thing has been wiggly for months! :) The school put his tooth in a tiny treasure chest and he was so excited about that!

Ethan and his tooth!

Ethan also got a much needed haircut :)

 

 

Ethan's steri strips finally came off last night. I was very relieved since his skin hates adhesives of any kind and the strips were causing raw skin :( He's happy to have it off though!

 

Here's one of Callie's art projects from this year

 

 

 

Here are pictures from Callie's first and last days of 6th grade!

 

 

 

Here are pictures from Ethan's first and last days of 1st grade!

 

 

 Ethan's teacher sent home a DVD with a video of pictures of the school year. It was so sweet and I loved watching all these activities that Ethan participated in! I wish I could upload it onto here, but it's almost 18 minutes long so that wouldn't work! :) He finished off the school year meeting most of his IEP goals and had a report card of all Bs and an A!

 

Callie brought home 7 awards from the school ceremony today! She earned High Honor Roll and got straight As! :) She was accepted into the advanced and gifted programs for middle school next year. She will take 9th grade English/Reading and Algebra! Over the summer she has to take an online math course that will cover the things she'll be missing by skipping 8th grade math. So proud of my girl!

 

 

A couple of weeks ago my mom won tickets for the Wayside Fireworks at the Indians game! We got 6 tickets and they upgraded our regular season tickets for the game as well! My dad got to throw out the first pitch (sadly no pictures) and we were able to sit on the field in recliners to watch the fireworks show after the win! It was a great game and we all had a lot of fun!

 

 

 

Callie is halfway through her softball season. To say her team is rough is an understatement! It's been a looooong season already. :( Callie enjoys playing though even though her team is so bad. She rotates between catcher and third.

 

 

 

We have an extraordinarily packed summer ahead of us filled with sports, camps, trips, and doctor appointments! Please keep us in your prayers for a calm, safe, and healthy summer! I'll update soon with our summer fun!