Archive for January, 2018


The Boy’s Cardiac Status

Heading home from yet another trip to Dallas…our 15th year of appointments at Children’s Dallas.

This time we moved with Dr. Zellers over to the Plano hospital, and I am quite impressed!  Was just really wierd not going to the main hospital after doing this for so long. However, we got to spend alot more personal time with Dr. Z and had virtually no wait time.

So where are we with Kaston’s cardiac status?

0F6DC719-EC50-4267-94FB-BEC0AAFF1E4E.jpeg

He had a 24 hour Holter monitor done Monday/Tuesday but Dr. Z didn’t have time to get the reading done on it. He wants to compare it to his last one and see if he sees anything different. His EKG and Echo looked good and he is in normal sinus rhythm.

He said he may want him to come back and do an exercise, or stress test, to rule anything out.  Basically, we are trying to get to the root of his extreme fatigue.  He sleeps all the time and it’s only getting worse.  (He’s asleep right now and slept 12 hours last night) When he is active, his recovery time is twice as long as it used to be.

We feel it is likely a combination of things.  His heart rate really doesn’t get above 115 or so and his average heart rate is in the 40s.  This in itself will cause anyone to slow down.  Top that with his 60% cardiac output from his Fontan anatomy.  And add the demands of puberty into the mix.

This may be just how his life will be. Could a pacemaker help?  Maybe.  But could that harm him too because of his anotomical design? Maybe.

Is there an underlying cause we’re missing? Maybe.

So we will wait to hear back from him next week and see where we go from here.  We may need to go back and do the stress test.  We may just let him push through it and see if he improves.  We might have to just say, it is what it is.  And let the boy sleep.

I am not sure how I feel about it all. Part of me says if, it is what it is and this is what his life will be like from now on, I knew this day would come, just not quite so early.  We knew he would start slowing down and his heart would not be able to  manage the demands he puts on it. So that’s a little disheartening if that’s what it is.

If he needs a pacemaker, that’s a whole new set of responsibilities and limitations for him to worry about. But if it improves his quality of life, then that’s what we need fo do.

I just have to remind myself it could be worse.  He is in relatively good health, his liver seems to be doing ok, his heart function looks decent, his lungs are junk but nothing we can’t deal with, and he gets to lead an easy and adventurous life. Because we designed it that way for him. Let’s get as many as those peak life experiences in as long as we can, because that opportunity will not always be around for him.

Dr. Z seemed pretty excited for him to have gone scuba diving and was glad to hear he did so well.  He said he only had a couple of Fontan patients that had attempted it.  And he asked what his next adventure was going to be…skydiving?  Of course Kaston said yes, one of these days!

So, we’ll just keep on keepin on until we hear differently!

 

 

 

 

Advertisements

A New Year, another update

This crazy dog of mine…oh how she has missed her people.

4EE02FE4-A915-4E39-813E-E19AED57A9BC
It’s been pretty quiet around the Snyder household the past few months. But we fortunately were able to take a few days off and head to one of our favorite places, Possum Kingdom Lake for NYE. And our pups for sure missed us this time. It was definitely the coldest I have ever been at the lake before, but that’s what campfires and propane heaters are for! We had an amazing and relaxing week-end, totally unplugged with some of our closest friends. The kids – teenagers mind you – even played Uno, Yahtzee, Life, Monopoly and put puzzles together! They also hung out at the little restaurant at the marina and played pool too. Other than that, great food, great company and a great NYE and transition into 2018.
House update::: everyone always asks::: We haven’t gotten any offers, we have had almost 5,000 hits online, host an open house once a month and had half a dozen showings beyond that. March 8 will be our 12 month mark. And we couldn’t be more ready!
So please pray for us to sell our house quickly so we can move on to our future plans….which, is also a hot topic question! Right now we are looking at purchasing some land in River Falls, the gated area next to where we currently live at Lake Tanglewood.

River Falls is also part of the Palo Duro Canyon and offers access to a 500 acre refuge with ATV trails, fishing ponds, waterfalls; it also offers an equestrian center, airport and golf course. So it is similar to LTW, but doesn’t have a damned lake (it’s actually on the backside of the damn from LTW) Our plans are to build a barndominium! (For those of you not in Texas, a barndominium is basically a large barn with upscale living quarters inside.) Bob has been filling his down time with floorplan possibilities. In the mean time, as soon as our house sells, we will either do apartment living, maybe buy a small house to rent out later, or just rent while we build. Once we get the main part of the barn up, there’s been talk of just setting up our 5th wheel in it and live there while we finish it out! So, we at least have options.

We also would like to purchase a lot at Possum Kingdom that has income potential by making it a vacation rental. There is the PERFECT fixer upper lot available right now, exactly what we are wanting in our price range, but the stars are gonna have to align just right in order for us to get it before it sells. So we will keep looking, and of course praying for our home to sell quickly. We are soooooo ready to start this next phase in life! And super excited as well!

Korah is steadily looking for side projects to make extra $$ and still working on her real estate license. It’s proving to be a bit more difficult than we anticipated but she’ll get there eventually. She’s still caring for the little girl of our friend’s and taking her to therapy for her spina bifida. But she is also currently looking for another part time job to help her with her upcoming trip to Europe in September. So she has been steadily applying for jobs this week.

Kaston has a big cardiology appointment coming up this month so we’ll be headed back down south to Dallas. He’s getting to the age of transitioning his care to himself so his appointments will now be geared more towards him and not so much us and our concerns. It’s just preparing him to learn to take proper care of himself when he turns 18 and transitions to adult care. So crazy we are getting to that stage. It will be here before we know it. He hopefully will continue to have no concerning or immediate issues. Other than that, he starts 4H competitive shooting next week and is super stoked. We are excited to see him trying a new activity in which he will likely do well in since he has been shooting recreationally for several years with his dad.

Bob’s work schedule is changing this year, as he will be working 3 months of days and 3 months of nights. Not sure how it’s gonna work out just yet, and we’re not super happy about it but it is what it is. He still gets his 4 days off and earns a ton of vacation and flex time, so we can’t complain too much and are super blessed to have the job he does.

As far as travelling goes, we ended out 2017 with a trip to Playa del Carmen Mexico and it was amazing!!! So much sun, beautiful beaches, amazing food, went scuba diving for the 1st time, and a great resort overall. Not sure we’d go back but it really was a great vacation.
2018 will take us to Alaska!!! We are doing an Alaskan cruise for my parent’s 50th wedding anniversary in May and we we couldn’t be more excited! We have about 14 couples/families going with us. It is gonna be quite the adventure for sure and we are so looking forward to this experience!

And then Korah will be going on her adventure with EF Tours to Eastern Europe in September. I am so excited for her! If things fall into place, I would LOVE to be able to meet up with her in Hungary, where my dad’s family is from, and explore for a few days and maybe go to Amsterdam. We’ll just have to see how things go. I also have talked about doing an East Coast Tour in the fall for several years and we have just never been able to make it work out. Maybe this will be our year!

There are SO many things I wanna do and places I wanna see and experiences yet to be had. If we could, we would sell it all and just take off for a couple of years! That’s why we are so passionate about travel and why we encourage Korah to do it NOW! But we for sure have been blessed by what we already get to do and the possibilities our company provides us. There simply just isn’t a price tag you can put on making these amazing memories with your family and friends. Glad we found a better, easier, cheaper way to do it.

So here’s looking at 2018…may it be better than 2017. It just has to be!

1D0C33D0-31A2-401A-BEE4-3A40C534A041