new meds

All right...finally an update!
Two days after our neurology appointment electrophysiology called to schedule a holter monitor. We got right in thankfully and did a 24-hour monitor. Ethan did great for it even while having to wear it to school.

Stickers always wreak havoc on Ethan's skin. Thankfully these healed up within 2 days :)

The weather was really great so Ethan was able to play outside, exert himself a bit, and do his normal routine so the doctors could see how his heart handles his daily activities. We got the call on Friday saying that the results look good! Apparently his heart rate is strong and even - thankfully! We've had so many rhythm issues with him throughout his life that I was pretty nervous about these results! He's already on two medications for it, so I didn't know what to really expect if the results came back bad! So relieved we don't have to worry about that now! :)

You can see the holter monitor pouch sticking out beneath his sweatshirt

Friday afternoon we got the call from the doctors saying that Ethan could start Adderall. *shudder* I went downtown to pick up his prescription since they couldn't call it into the pharmacy due to it being a controlled substance. I made sure to pick it up Friday so he could take it over the weekend and I could observe him. I didn't want to give him a pill Monday morning and send him off to school. There are a bunch of potential side effects (heart rhythm issues, racing heart, etc) that I wanted to watch for. Saturday he handled it pretty well! No heart issues as far as we could tell, but he did have some of the smaller side effects. His appetite was terrible (anorexic effects are a problem with this drug) and he had the "come-down effect" they warned us about. It's just him getting extremely whiny and cranky late afternoon as the drug wears off. He also DID NOT SLEEP! They said this could cause sleep issues, but wow he didn't go to bed until 3:30am and then was awake for the day at 7:30! I couldn't believe it!
Today went so much better. His appetite was still definitely decreased, but he ate a pretty decent dinner later in the day. Maybe we'll just have to give him lots of food at night when the meds wear off. Heart kids definitely can't lose weight! We also didn't really notice much of the "coming down" effect like yesterday, so hopefully that won't be a problem. If it is a problem, he'll need another med to take in the afternoon to counteract it. I definitely don't want to go that route! I pray that tonight he goes to sleep - he's still wide awake now at 10pm.
Tomorrow he returns to school. I'm going to ask the teachers to let me know if the meds are improving things or not. Their report this week will help determine if he needs a dose change or a different med. I pray that this really helps him and he can finally relax enough to pay attention and participate in school!

My parents recently went to New Orleans and brought the kids back some masks. They loved them!

Ethan is also dealing with a MAJOR case of separation anxiety. It started a few weeks ago and hasn't improved at all. :( Don't know what started it, but it definitely needs to stop! I can't leave him at all! Every time I try to run to the store, drop him off at someone's house, etc he goes into panic mode. It's just screaming and crying terribly - and I have to actually pry him off of me! I end up having to take him everywhere almost all the time! We even had to resort to watching church online (which we do whenever he's sick anyway) because he wouldn't handle going into his Sunday school classroom. *sigh* I pray that this ends quickly because it's driving me nuts! :)

On a happier note, we had a kindergarten open house last week! Ethan was able to tour the school, see some kindergarten classrooms, and meet some teachers. He of course wasn't social with anyone - even though a little boy tried to chat with him and be his friend. He really needs to figure out how to communicate with other people or else he's going to be in trouble next year trying to make new friends! Hopefully he'll continue to improve with his speech and that'll give him the confidence to hold a conversation with his peers. He is looking forward to kindergarten, so that's so good!

The kids have also been enjoying playing with the dog and going to the park in the warm weather we had yesterday!

Ethan was pretending to be a "lifeguard dog" - which is apparently a police dog. He was very excited to see one on TV when we were watching the news about Boston, so now that's what he wants to be! I told him maybe he can be a policeman and own a police dog, but actually being the police dog is going to be difficult... :)

Callie riding Moose

And for the park:

Please keep Ethan in your prayers that this medicine helps him out and has none of the side effects. Please also pray that his sleeping and separation anxiety issues go away!

Also please keep a fellow heart family in your prayers. I usually don't post about other heart kids, but we've been following him for a long time since he has heterotaxy just like Ethan. Sadly, little Ryker earned his angel wings a couple days ago. Please keep his family in your prayers!

I'll keep you all posted with how Ethan handles his meds this week and any new news :)

Neurology

We went to the neurology clinic last week. Ethan has been struggling a lot in school, especially this year. We went in to have him evaluated for ADHD and any other problems that are common in CHD kids. Our doctor gave a talk to our heart group last month, and explained all about how ADHD has an extremely high prevalence in CHD kids - around 40-50% as opposed to the normal 4-5%. After our appointment he claimed that Ethan definitely does appear to have ADHD. He also said Ethan has motor apraxia - which after the heart group meeting I had suspected. This means that his coordination is terrible basically. Sequencing motor functions is a struggle - things like skipping, jumping, and more complex motor things as opposed to the basic walking, running, etc. We already know he was diagnosed with speech apraxia years ago. Thankfully he's been progressing in his physical therapy, and hopefully will continue to improve as the warm weather comes and he gets out more to play and practice.

For the ADHD we are trying to find out if medication will be allowed. Most of the meds for this contain stimulants and/or things that mess with the heart rhythm. Since Ethan already has major rhythm issues we're not sure if he'll get approved or not. Hopefully between the cardiologists and neurology they can find the right medication to help him. He also said that getting his ADHD improved will help him sleep. The boy just cannot sleep - and the doctor thinks maybe his brain just can't shut down at night to allow him to fall asleep. Hopefully we can get that figured out too. He didn't know what to do about the middle of the night waking up though. That has nothing to do with ADHD apparently. Ethan's normal night schedule is bedtime routine starting about 8:30. By the time books, songs, and prayers are done it's about 9pm. He doesn't actually fall asleep usually until around 11:30pm, then wakes up again between 3-4am. Then he's up for the day between 7-7:30am. That's just not nearly enough sleep for him - especially with his heart!

They also are considering a headache medication, but I think I'm going to try to hold off on that until after his next cath. Cardiology is going to put a stent in the SVC to relieve the pressure there, and we think that might be causing his frequent headaches. If that can get fixed without more medication I would be thrilled. That will be happening soon (cath in the next couple of months) so hopefully they'll have no problem waiting on the medicine.

Neurology said they would talk with cardiology this past week, so we should know within the next day or two about the medication plans. We are supposed to return in about three months to do a full neuro exam - takes about three hours including the neurocardiology clinic, neurology, and behavioral clinic. That should be interesting...  :)

Other than that things are going fairly well. Ethan is sick right now with a lot of congestion and a wet cough. He's back to his full routine of breathing treatments and the vest. He was really bad over the weekend, but today he's showing signs of improvement so hopefully he'll be feeling back to normal soon!

And here's some pictures of Ethan playing with a worm he dug up this past weekend. :) This boy is a nut!

Heart Diagrams and cath pics

Here you can see the vein narrowing in the center of the picture. The old stents are all visible - they're the stuff that looks like mesh.

 

Here are some pictures of some stents in his heart before any ballooning dilation.

  



Here's the same vein as two pics above, but after dilation. More stents are visible in this picture. Those circle loops spaced our in a vertical line on these pictures are his sternum sutures from his open heart surgeries.

 

These are just some of the cath pictures that Dr. G sent over. I think these are really interesting, so I thought I'd share them. I also requested a new drawing diagram of his heart. I had one a long time ago when Ethan was a baby, but with all the work he's had done I needed an updated one. Dr. G sent over the one they use pre-caths. He is so great, he even labeled it for me! :)

 



Here's the labeled diagram of Ethan's heart from before this past cath and stent placements! Below is a diagram of a normal heart to use as comparison.



 
 

Ethan is doing very well. He returned to school Monday. :) Unfortunately we are still trying to get his INR therapeutic. He is currently still taking Lovenox (belly shots) much to his dismay. We had to order a whole new week's worth since his blood is still too thick. We were making slow but steady progress increasing his INR by 0.1 each day. Three days ago he was at 1.7. Our goal is to be between 2.0 and 2.5. Yesterday's test showed that his INR dropped to 1.4! :( I have no idea why it dropped since he hasn't eaten anything that affects his INR (green veggies and such) and he hasn't missed a dose of medicine. This morning's test was 1.6, so at least he's starting to climb again. It's very frustrating, but please pray that he get in his range quickly so we can be finished with these shots! 



Belly shot bruises



 



Cath review and pictures!

Ethan had his heart cath on Monday. Things went VERY well and we are so relieved! Thank you all for your prayers and support throughout his hospitalization! It means so much to us! Here's the details on all that happened.

Pre-op went very well as usual. Ethan had his Versed to keep him happy and calm before surgery. It definitely did the trick. :) He went to the OR and went on the table at 8:30. He did so well and commented on how "He loved the room." :) The Versed was definitely working LOL! Right before they put the mask on him to put him to sleep he told me he had a secret for me. He said "I love you". It just melted my heart to hear that right then :)

Pre-op snuggles with Daddy

 

Time for Mommy's snuggles!

It took the usual few hours to get access and pressures checked. Then they placed two covered stents in his left pulmonary artery. This is a small collateral artery that is his only connection between his heart and left lung (the bad lung). This is also the part that continually clots off every few months. These covered stents went inside his old stents to hopefully stop any chance of cells growing through the stent and closing off the artery again. We obviously can't lose this artery! Dr. Golden (cath doc) thinks this will really do the job well, but is still concerned about how his cells are going to react on the ends of the stents. He doesn't know if the cells will grow around the ends and try to close off there. We just pray that this isn't going to be the case, but it's definitely something we'll be watching for vigilantly! Dr. G. also pointed out that these stents made 7 for Ethan! He called him "Stentman"LOL. My wallet is filled with all his stent cards! *sigh*

The procedure went very well with no rhythm complications thankfully! I was so worried about that since he's had so many complications with that in the past. They were prepared and waiting with all the medications to get his rhythm in control just in case, but a mom still worries. The cath was over around 3pm. Then they called a little while later from the OR saying that they were having the bleeding issues again. They couldn't get his neck to stop bleeding from where the catheter was inserted. Of course that starts my heart racing since it brought me back to the bleeding mess of last time! They were able to stop it, then they extubated him and the bleeding started again. More pressure was applied for a long time and finally he stopped bleeding and pressure bandages were applied. His total bleed time this round was 1 hour.

Dr. G came out to talk with us after the cath and tell us how it all went. He said he is optimistic about how the stents will work and said they are placed well. He had peeked at the conduit and saw the narrowing around the sides of it. Last cath in September he placed 2 covered stents there. The stents are holding up great, but the artery touching the stent is narrowed already where they meet. He said there's nothing he could do with that since he didn't feel safe at all ballooning that open or placing another stent. It would just crack his conduit again and we'd be in another VERY dangerous situation. He said they do not plan on touching his conduit due to the risk, so the only step left is the open heart surgery to replace that. We have been expecting this surgery for a while now (it was supposed to happen last June and then again last September) so this didn't come as a surprise. He thinks we can hopefully wait until early next winter though before going in to replace that. That will give Ethan more time to grow before placing a bigger conduit in.

He then discussed a new finding with us. For some reason that he couldn't figure out (I say it was God) Dr. G felt the need to measure an area he hadn't looked at in years. He decided to check out the SVC in his neck on his way out after finishing the stent placements. He did some measurements and found out that there is an almost 50% pressure difference in a spot in his SVC! This is huge! The pressures above this spot were much higher than they were supposed to be, and the pressures below were obviously much lower. He thinks this could be the reason for the huge bleeding problems we're having as the caths finish up. There's just too much pressure built up right in his neck there to get the bleeding under control. He said that definitely needs to get taken care of soon, so we'll be having another cath to balloon that area and probably place another stent in the SVC. This next cath will be done in about 3 months he thinks. He didn't feel comfortable taking care of that during the procedure on Monday though. His plan was to be "in and out" to avoid any complications. He always reminds us that he has an amazing track record with caths, and pretty much the only complications he deals with all are with Ethan. :/ We love Dr. G and trust him completely (obviously or we wouldn't have him take care of Ethan his whole life). Ethan is just "one of, if not THE, most complicated case they have" according to his cardiologists. *sigh* Way to be a record-breaker, Ethan. ;) Dr. G basically wanted to have a successful complication-free cath, so thankfully we were basically able to do that this time!

Post-op! Pale, but doing well

 

 

When we saw Ethan post-op he was extubated and resting pretty comfortably. He looked pretty pale, but that's to be expected after what he went through and the blood loss. He didn't need a transfusion thankfully, so his body was able to just recover on its own. He woke up with his typical raw throat from the breathing tube, so he started in on his ice water and popsicles. Recovery went great and the only problem he had were some achiness in his leg, headaches, and nausea. He still is recovering a bit in the nausea department - once he starts eating something he wants to puke it right back up. Thankfully this is getting better each day, but please continue to pray that it goes away completely and he gets back to his great appetite!

He always gets really red, warm, and a bit puffy after his caths for some reason

He had a great recovery - probably the shortest one ever! We had a private room for the first time in a LONG time! I think this really helped him out! He had a very restful night only having to wake up at 4am for his second round of IV antibiotics, at 5am for a chest xray, and one other time for vitals. Much more rest than usual in the hospital! :) He woke up hungry and happy! I was so relieved! He behaved so well in the hospital this time, so that is a huge blessing!

Coloring fun waiting for breakfast

 

Playing some LeapPad games

 

Child life has improved SO much since our last visit! Maybe they're listening to all the survey responses after all! :) Ethan received a gift bag in the recovery room filled with markers, a hat, card games, coloring books, a magic kit, and some other games and activities. It was so nice and so unexpected! They even posted a schedule on the door of our room of the daily group activities in the playroom! This was something I put in each survey that we LOVED at Rainbow, and were so disappointed that the Clinic didn't do. Rainbow is so great about having fun activities and games going to keep the kids happy and entertained. We definitely miss that, but it seems like the Clinic is on the right track! :) YAY!

Finally made it to the playroom :)

 

Don't let the face fool you, he was SO excited to see a tractor to ride!

 

Ethan had an echo Tuesday morning. They weren't able to get a good picture of the new stents unfortunately, even though they scanned for well over an hour! It was frustrating, but hopefully everything is still good! We return for a post-op appointment on March 20th. Hopefully we can get a good picture of the artery then and it's all open and working well.

Echo time

Waiting around for discharge news...took a lot longer than we thought!

Things are going very well. Ethan is taking the week off school to fully recover. He restarted his Lovenox injections (the blood thinner shots into his belly). He has to do these shots twice a day until his INR is in his range (2-2.5). This morning's reading was 1.4, so we still have a little ways to go unfortunately. He HATES these shots, and I totally understand since they hurt terribly! I couldn't stand doing them when I was on them, so I feel awful for him! Hopefully we can get in range quickly and stop the shots soon!

He has kindergarten sign-ups going on now, so we're trying to get all his paperwork together to register for fall. I can't believe he'll be in kindergarten next year! I also have some questions for Dr. G at our next appointment like if he's supposed to skip gym class next year, etc. We also have an upcoming appointment with neurology to assess Ethan. I attended a lecture through our local Mended Little Hearts group with the doctor recently. It was great and really informative, so I'm looking forward to our appointment with him! He discussed all about CHDs affecting kids in ways like ADHD, Autistic characteristics, headaches, etc. He basically described Ethan perfectly during his presentation! We'll see what he has to say and how we can help him for next year being in "big kid school".

And...Ethan tried playing Go Fish (the card game) yesterday for the first time. He loved it, but here's an idea of how the game went.
"Me: Okay, now you have to ask me for a card. Look at your cards and see what you need to make a match."
Ethan: Okay.
Me: So say 'Do you have a 2?'
Ethan: Yes.
Me: No. I mean, you ask me if I have a 2. That way you can get your match.
Ethan. Yes. Here you go. (Proceeds to hand me his card.)
Me: No, you need to ask me for a card. Say, 'Do you have a 2?'
Ethan: Yes.
Me: *sigh* Ask me for a card.
Ethan: Go fish.
Me: Really? "

He did catch on for the most part and enjoyed playing LOL



Silly boy :)

One last thing...Callie just finished fundraising for Hoops for Heart. So many of you donated for this program for the American Heart Association. She submitted a whopping $715! I spoke with her teacher today and she said Callie's donation blew everyone else's out of the water! She is the highest fundraiser of the school by far! :) Thanks so much to everyone!

Cardiology and catching up

Well...just to spread the word, Callie is participating in Hoops for Heart again this year! The past three years she was top fundraiser of her school - all thanks to you! We have been able to raise a lot of money each year for the American Heart Association! :) We're asking again for donations. If you'd like to donate money for Hoops for Heart we would be so appreciative! We're kind of behind due to Callie's trip last week (more on that in the next post), so we're trying to get money collected this week if possible. Please let me know if you are able to donate -- and ANY amount helps! You can send me an email at jkbradley44@gmail.com, and I'll send you my address to mail a check or cash. This is going to a great cause - obviously raising funds to find cures for heart disease is VERY near and dear to our hearts! :) Thank you!

Also...girl scout cookies have arrived! If you ordered some cookies, expect them soon! :) And thank you so much for all the cookie orders!

Okay, so we had a cardiology appointment yesterday. This was just a pre-cath appointment to make sure Ethan is looking good and ready for the cath. His EKG was good and we didn't even do an echo. :) Ethan was happy about that! We went over the plans with Dr. G (cath doc) for Monday. He's going to insert a covered stent (very similar to the one that was placed last time). This one will go in his left pulmonary artery though - this is the one that continually clots off. We hope that by putting in this covered stent it will stop the closing off of the artery! That would be amazing! The concern with this is we don't know how the ends of the stent will react. His cells have been growing through the open stents that are there, which is why they keep clotting off. This covered stent will stop the cells from being able to grow through the stent and clot, but the ends are a concern. The doctor doesn't know if his cells will wrap around the ends and clot off on the sides instead of in the middle. I asked what we do if that happens, and his response was "That's a good question." Then silence. Well, apparently he's not too sure what to do in that case yet either. Please just keep Ethan in your prayers that his body accepts this without a problem and doesn't have any growth around the edges!

Ethan did so well for his EKG! :)

Daddy and Ethan playing on the computer waiting for the doctor

Dr. G once again reminded us of the fact that surgery is approaching. He said we have exhausted all options for working on his conduit - especially since last time was so dangerous and it cracked. He said we're not even going to touch it again. The next step is the open heart surgery to replace it with a new larger one. We've been expecting this (that was actually supposed to happen back in June and then again in September), so it's just something to know is coming.
Please keep us in your thoughts and prayers for a very smooth and successful cath on Monday! I will keep you all posted as the day progresses - and even more so on Facebook if you follow me there.

Other than that, things have been going well. Ethan has been feeling well thankfully and did not end up getting the sickness that went through our house last week. I had some nasty stomach bug for 2 days, a sinus infection, and lots of congestion and headaches. I'm still not back to 100%, but I'm doing SO much better than last week thankfully!

Ethan finally got his new glasses! He loves them, so that's a relief!

Mid-blink :)

We took a trip to Chuck-e-Cheese before Callie's trip. Here are some pictures of that!

*Note the small child on the games in the background. This kid was climbing on EVERYTHING without any parent in sight! John helped him get off countless games all while his mom ate pizza and chatted in a booth with her friend. Grrr!

The kids all had a dance party and ticket grab :)

Callie shooting baskets

My dad's birthday was this past weekend, so we had a little ice cream cake to celebrate. Ethan had to help Grandpa blow out his candles though!

Also we had a little family bowling night. We met up with my dad for a Chinese buffet, then headed over for bowling - and met up with my cousin who was playing there in a league that night. :) We had a lot of fun!

Ethan is not the most focused bowler. :) Here's a video showing a bit of how his evening went. LOL After rolling it towards me, he managed to bowl in the wrong lane!


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Thank you everyone for all your thoughts, prayers, and support! It means so much to us! I will keep you all posted with the cath updates. I will also be posting up about Callie's trip last week - but that might be broken up into a daily log... Still working on it :)

CHD Awareness and busy busy busy!

I can't believe how long it's been since I last updated! We've been running around super busy lately, so I am sorry I never got back to everyone with the cardiology plans. Here's a bit of what we've been up to lately.

Cardiology:
Our cardiologists all discussed the ideas for surgery versus cath. They decided that we should do one last cath attempt before the open heart surgery again. What we'll do is place a covered stent (just like the last cath) and scope out each of the other collateral arteries. If any of the other stents need ballooning then we'll take care of those at that time. I do have concerns obviously since placing the last covered stent was so traumatic to Ethan's body - his bleeding issues were so difficult to stop since the catheter is so much bigger to use for this type of stent. We'll be discussing all the specifics at our pre-op appointment on Feb 28th. Please just keep Ethan in your prayers for a very smooth and easy cath - with no bleeding issues this time! The cath is scheduled for Monday, March 4th.

Pulmonology:
We've been dealing with a nasty cough that just wouldn't go away for a couple months this winter. With breathing treatments and time Ethan is starting to do so much better! I'm so relieved that his lungs seem to be clearing up so well - especially with this cath coming up so soon! Hopefully he'll continue to stay clear!

School:
We're still working on this. Ethan loves going to school this year - thankfully that's much better than last year. But he still doesn't seem to care about actually "learning". He just wants to go to play with his friends, the toys, and do art projects. His teachers comment that they're still having to work with him on his concentration and focus on schoolwork. He just seems to struggle so much in paying attention to schoolwork! He does still do much better when doing work on an iPad or computer as opposed to a worksheet or flashcards. He's also excellent at doing work like building letters out of blocks, solving puzzles, and hands-on things like that - even if they involve the same things that a worksheet would be showing. Oh well, hopefully he'll improve with his attention and ability to focus on things on paper soon. I have a feeling kindergarten is going to be rough for him next year...

Callie:
Callie's been keeping VERY busy lately! She's been busy having fun with her Girl Scout troop. One activity we did was attend a K9 unit show at our local library. The girls loved it and had a great time!

Callie's in the pink all the way to the left

She's also finishing up her basketball season and doing so well! She has improved so much this year, and actually starting scoring baskets, stealing balls, and becoming quite aggressive on the court! :)

She also was invited to help her friend's indoor soccer team play some games this season. She played last weekend and this weekend (doubleheaders each Sunday). Indoor soccer is a totally different game than she's used to with her outdoor team, but she seems to really like it. She's going to participate in an indoor soccer training program starting in two weeks. That will also improve her outdoor game I'm sure, but I think she's wanting to sign up for winter soccer with her friend too. *sigh*

In addition to all this, she auditioned for the children's Honors Choir. The kids had to individually audition in front of the music teachers, and the top 7 students from each school in the county were selected for this choir. We are so proud of her that she was selected and will perform at our Community College in March!

Softball and spring soccer seasons are fast approaching, so things don't look like they'll be slowing down soon. Oh well, at least there's not much time for boredom!

CHD Awareness:
Onto the big week! Ethan is one of the Cleveland Clinic Children's Hospital (our hospital) Littlest Heroes for the week! He was able to have a photo session at the hospital and they used one of the pictures to make a poster and explanation of his heart journey! It is so exciting! :) Here is a picture of the poster they made.

Here are some of the other pictures that were taken - these are just some of my favorites from the shoot.

 

 

Here's a picture of Ethan showing off his muscles and scars to promote CHD awareness!

And once again I haven't made a new video. One of these years I need to start much earlier than February! Here's the video that I made when Ethan was 1 all about his first year's journey with heart defects. I guess it'll just have to do. :) Just click this link below to watch the video - and there is music so make sure your volume is on.

http://www.onetruemedia.com/shared?p=7f65c3ff418f1ce42ccd29&skin_id=601&utm_source=otm&utm_medium=text_url


That's about all I'll update on for now! I will have a Callie post coming up later this week about Callie's big trip! Please continue to keep Ethan and our family in your prayers!

Ethan's Journey at OneTrueMedia.com

Make a video - it's fun, easy and free!
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