Cardiology

Here's a quick update on Ethan's cardiology appointment this past week.

We started off the week with a blood draw to check Ethan's INR. It came back at 2.1, so that is perfect for us. No Coumadin adjustments needed! :) Now we have another month until that needs to be rechecked.

Wednesday we headed downtown for a cardiology checkup. The appointment went extremely well! Ethan had an echo, and we even had a resident doing his this time. He was still learning and Ethan was his first complex case. LOL it was interesting to watch him try and navigate Ethan's anatomy! He's definitely not an easy echo for trained techs much less a new one! :) The woman training him was very helpful and he did a great job. Overall, his heart looks good (for him)! No bad changes or anything alarming, so we're so happy about that!

We did another round of labwork at this appointment. Wednesday's INR test came back at 1.7. That was a little unusual to change in just 2 days, but still it's close enough to where we want it so we're not concerned. Another test we ran was his BNP. This test measures his level of heart failure. We've decided to start monitoring it a bit more closely since his levels have been changing recently. A normal healthy person's test would be below 100. Basically the higher the number, the more stressed out the heart is. Two tests ago his results were 870. Last test showed his number was around 1400! We definitely didn't like that big increase, so needless to say I was very nervous to find out his current BNP. But...the results came back at 675!! I couldn't believe it! I actually wondered if the blood work was switched with someone else, but I'm so thrilled! LOL! Ethan's oxygen sats have been steady in the upper 60s to mid 70s, so we're definitely happy with that still. And another amazing thing...Ethan has gained 5 pounds since August!! WoW! I am pretty much contributing it to the fact that he's off his Adderall (it decreases appetite) but he's still taking his Periactin (headache medicine that has a side effect of appetite stimulation). It's very exciting to see him actually putting on some weight! :)

We return in 3 months for our next exam. Basically, the plan is to watch and wait for his heart to show us he's ready for surgery. Once his oxygen sats go back to the lower 60s and/or his bloodwork starting showing more heart stress we'll take the next step. The next step will be a pre-surgery cath, and then open heart surgery to replace his conduit. So far everything looks good, so hopefully we can wait a while until surgery! :)

We've also started his therapy for anxiety. Hopefully we start to see some improvements and he can learn some better coping skills. We are also starting up his new physical therapy early December. We are trying to do occupational and his extra speech therapies at the same location, but they're not sure how long it will take to get us in the schedule.

School is still a big struggle, but we're having some breakthrough good days showing up. Ethan started his medicine a little over 2 weeks ago, and we just did his third and hopefully final increase in dose yesterday. We saw a little improvement in his tics this past week, so hopefully this next increase will really help out. At least Ethan has mastered his meds. He can take all his pills in one handful! I'm pretty impressed with his skill! :) These are his nighttime meds, not including the liquid med.

I'll keep you all updated as things progress. Please keep our heart buddy, Micah, in your prayers. He's currently inpatient (and has been for over a month) waiting for a heart. He can definitely use your prayers, as well as some other friends who are recovering from transplants and surgeries. :)

Beads, Halloween, more appointments, and some answers

I finally have some updates with Ethan's Autism Center evaluations. Ethan returned for his second round of testing and then two weeks later I went in for the results meeting. They actually do NOT believe he has autism! He definitely has autistic tendencies, but they believe his severe anxiety is manifesting as that. That was a huge relief! However, Even though that diagnosis was ruled out, we still had to go over what they believe is the cause for his behavior and tics. They confirmed the theory of severe anxiety - especially in social situations. This is why they think he doesn't interact with his peers. Another diagnosis they had is one I hadn't thought of before. Apparently, Ethan has Tourette's syndrome. This is the cause for his motor tics as well as the vocal tics that he displays in the classroom. Anxiety and stress increase his tics, so that only makes being in school that much worse. The diagnosis cannot be made official until one year after the start of his tics. We really noticed a major increase in tics at the end of Kindergarten, so the diagnosis will be official near the end of this school year.

Due to these new findings, med changes and plans had to be discussed. We are starting therapy for him to try and help ease his anxiety, improve his social skills, and figure out better coping mechanisms when he's stressed. Unfortunately the great anxiety and social group therapy we were referred to has a wait list over a year long! In the meantime, we just found another therapist to hopefully help him out until we can get in at the other center. We went to his first therapy session today. We're still feeling it out, but hopefully they'll be able to help him and he'll be able to benefit from this!

We also took him off his Adderall for his ADHD. We have switched him to Intuniv. This new medicine should help his ADHD as well as help decrease his tics. Hopefully it works well for him! It also is a blood pressure medication and has the potential to interact with two of the heart meds that he is currently taking. We did get clearance from cardiology and electrophysiology, but we have to monitor his blood pressure twice a week to make sure he stays in the safe range. So far I haven't noticed an improvement, but we are still on the lowest dose. We obviously don't want to go up too much as that will be more risk for negative side effects. Hopefully he'll start responding positively to this med and we see improvement soon!

I'm still working on getting Ethan in at a pediatric center for his physical, occupational, and speech therapies. It was recommended that he has additional help in all of those areas outside of what school is able to provide. I am going to see if it's possible to schedule all of the therapies in one day each week and just let Ethan miss school for it. That would be easier than having a different appointment after school every day! It's never easy trying to get him to therapy and appointments while Callie is trying to get to all of her after school activities too!

We have an upcoming blood draw to check his INR levels. That will happen probably this afternoon. We also are going in to get new glasses for the kids. I know it's been a couple weeks since their eye appointments, so I really need to get those new glasses for them! Then we have cardiology and an echo on Nov 19th. Please keep praying that the appointment shows his heart function is great and we don't have to discuss surgery yet!

In happier news, the kids had a great time trick-or-treating this year! Callie's friend's mom made her daughter a costume (neon cow) but it was too small for her. So they offered it to Callie! She wore it to the school fall costume dance as well as trick-or-treating and had a great time! Ethan wanted to be a cop again, so we didn't even have to buy him a new costume! LOL - the kids made it really easy this year! We did have to order a prisoner costume for Fiona, and that made Ethan happy! It took Ethan all the way to the end of trick-or-treating before he would say "trick or treat" to people. He just went up with Callie to the doors and stuck out his bag for them. :( At least he relaxed a bit near the end, and they ended up with a ton of candy!

 

 

Of course we also enjoyed carving pumpkins, roasting seeds, and watching Halloween movies!

 



Another great thing I wanted to let you know about is the Beads of Courage program! I'm not sure if I've discussed this on the blog or not, so just in case here it is. This is a program that sends kids a special bead for each medical procedure they endure. If their hospital is involved in the program, they receive their beads immediately from them. If not (like ours so far) we send in a form that lists each procedure he's done during a certain time period, then they mail him the beads he's earned. He gets so excited for his beads and loves to look through them! I'm so happy he's involved in this! Here are some pictures of him stringing his beads and displaying them. We can take them to the hospital for each stay and it can remind him of how strong he is and what he can earn for each ordeal! Since these pics he has earned about 20 more beads, but you can get the idea of what his string looks like! :) So far he is on his 7th string and has earned over 2500 beads! He has many "100 beads" that symbolize 100 treatments in a large bead instead of having so many smaller ones. Each bead symbolizes something different (i.e. yellow beads represent inpatient hospital stays (we do one each admission, black beads are for blood draws, glow in the dark beads are for echos, and there are special beads for caths, surgeries, et cetera). He's very proud of all of his beads, so I'm so glad this program makes him happy about his medical stuff!

Callie just got her ears pierced so she is thrilled as well! She's been asking for a very long time, but I've been putting it off for as long as possible. She had them done when she was 6, lost the earring back multiple times, and we had to re-poke her ears twice. I didn't want to go through that mess again. So we decided to wait until she was definitely old enough and responsible enough to check her ears often to make sure everything is there! Then with all her sports, things kept getting delayed. Needless to say, she was surprised and so happy that we went yesterday! She picked out the Make a Wish star earrings. They donate money to Make a Wish for getting that pair, so Callie was very happy about that!

Report cards came in last Friday as well for both kids. Callie earned straight A's and has many positive comments from her teachers! She's doing so great and I'm so proud of her! Ethan also got straight A's! I was very happy about that and honestly a bit surprised though I monitor their grades online regularly, so I knew they were doing well. He's also doing very well and meeting a lot of the IEP goals already. I'm so happy about that, and I hope he continues to improve and starts really enjoying school!

Callie also finally got her 6th grade school pictures!

We also let Ethan pick a restaurant to celebrate an entire week of being in the good behavior section of the behavior chart at school a few weeks ago. He chose Applebee's and then a movie, so here we are enjoying that. :)

Basically, our plan for the next few weeks is to work on Ethan's meds, therapies, doctor, and school. Callie is also busy with school, girl scouts, band, choir, and the start of basketball. I obviously have work and only one month left of my class (I can't wait to be done with this one!). Then it's time for Thanksgiving and preparations for Christmas! John's also very busy with finishing up fall landscaping and preparing for snow! I can't believe how quickly this year is going by!

Here are Moose and Fiona enjoying the weather before it gets too cold!

Please keep us in your prayers to stay healthy and have good news at upcoming appointments. I'll keep you posted!