Kaston & his new pick-up!

As we enter into one of my favorite seasons of the year, I wanted to give an update on Kaston’s upcoming appointments.   Some of it is repeat info…

We leave next week for Houston and are driving the 600+ miles this time (anticipating an 11 hour trip with stops)…definitely not looking forward to this, but it’s necessary for this particular trip. We’ve been on the list to stay at the Ronald McDonald House since September, so they should have a room available for us.  But we won’t know until the night before we leave.

Over the course of the 11 days we’ll be gone, Kaston will be seeing Dr. Dreyer in Cardiology, Dr. Hertel in Hepatology, Dr. Cutitta in Psychology and Dr. Kim in Electrophysiology. It’s definitely been challenging keeping everything straight now that he has 4 – well actually 5 doctors.  He only sees his heart cath cardiologist when he has a cath.  Thank goodness for Dr. Dreyer’s Nurse Coordinator, Corey!  He’ll be having the normal echo and EKG and lab work and I don’t anticipate him having any further testing beyond that. Which is a nice break for him! We spread everything out this time instead of stacking everything in because we have found those long days of back to back appointments are daunting and exhausting for him.

These appointments are basically them just checking his liver status and if they are seeing any improvement from him being on Sildenafil and making sure cardiac and liver status is still stable. They want him seeing his Psychologist each visit as well, just to keep him in check. It’s definitely alot for a 16 year old kid to manage and we are always open for getting him any additional help that might help him manage his sometimes difficult life. The MAIN reason for these appointments is to see if he is a candidate for a pacemaker.

After his last 24 hr Holter monitor, it indicated that his minimum BPM was 36 and his highest was 105, with an average of 53. This is dangerously low for someone his age. The good thing is that he’s in normal rhythm. However, his rates just keep getting lower and lower. So it was something that Dr. Dreyer wanted to explore a little further, so that’s why he referred us to an Electrophysiologist. They basically are cardiologists that deal with the electrical side of things in the heart.

We want his heart to be at an optimal level, and having a Congenital Heart Defect means that we will do what we need to do until what we did stops working. The surgeries and procedures he’s had up to this point are only Palliative, meaning a temporary fix to a permanent problem. I am pretty anxious about that particular appointment, because a part of me wants him to have a pacemaker with the hope that it will make him feel better and improve his heart function, and possibly his liver function. But of course, I definitely don’t want him to have to have another major surgery. People like him with his cardiac anatomy getting a pacemaker is a major undertaking. So we are just in the hurry up and wait mode in life.

My gut feeling… I do not believe that they will decide to do the pacemaker.

We are already working on his January appointments. Talked to the cath lab today. For now, January looks like he will be having a cath, another liver biopsy, an MRI w/Elastography, a sonogram w/Elastography, cardio, liver & psych visits. And then if they determine he needs a PM, then there will be additional testing on top of that. We will be in Houston for an undetermined amount of time, but we are thinking around a month or so. Just because we will be so far away from home. We figure a week for testing & pre-op, a week for cath, biopsy and PM, and then 2 weeks of follow-up appointments. If a PM is not warranted, probably another week to 10 day stay in Houston and are planning on flying.  Depending on how long we are down there will depend on when Bob is with us.  There’s no way he can stay the entire time, but will definitely be there for any surgeries or major procedures.

We also have been intentional on scheduling these appointments around some other activities that we wanted him to be involved in! Hunt with Heart will be having their annual Christmas party for the families and Sporting Clays shoot while we are there. And he should be getting his Corsican Ram mount presented to him at the Christmas party. He actually was supposed to go on another hunt last week-end with them, but since Bob’s accident has left him somewhat immobile, they had to cancel it. But hopefully he will have another opportunity to go on another hunt at some point. On Saturday they have their big charity fundraising event and Kaston will be shooting with some of the sponsor’s teams. We were able to attend both events last year and had just the greatest time and are so appreciative of all they do for our kiddos.

Also while I am there, I am hoping to do some Mended Little Hearts work with our Houston Chapter. With my new role being on the Mended Hearts Board of Directors, it has definitely come with lots of conference calls, emails and webinars, which I have enjoyed tremendously and learned tons. But it definitely gives me a sense of responsibility to help any groups in whatever area I may be in. So I am looking forward to meeting the Houston leaders and staff that work with MLH in the hospital and see where I can be of assistance in my position.

We will also be there on Veteran’s Day, and you all know how big of a Patriot Kaston is! There is a Veteran’s Day benefit concert that we are planning on taking him to with Joe Walsh, ZZ Top, Sheryl Crow, the Doobie Brothers, and Brad Paisley. The proceeds benefit several military charities and should be a really great show. The tickets are only $25 so it will be a great economical evening out! And then there is a Veteran’s Day ceremony and parade in downtown Houston that we are planning on going to. We have a couple of other things planned…we still have to do school while we’re gone! So we’ll take in a couple of museums and do some educational exploring.

Another project we will be doing while we are there is that we will be serving breakfast each morning at the Ronald McDonald House, on behalf of The Children’s Heart Lane! Dinners are always covered by other volunteer organizations, but there is never breakfast available to the families. They do provide eggs each morning.  So we are going to make up some breakfast burritos & sandwiches that parents can grab n go on their way out, along with some fruit and pastry trays.  We are always looking at ways to give back and this fits inside the mission of what we do at The Children’s Heart Lane.

We will finish up our Houston “tour” by leaving on Friday the 15th and meeting our dearest friends in College Station, where they both graduated from Texas A&M. They are taking us to our very 1st A&M game ever for Kaston’s 17th birthday. Needless to say we are over the moon excited and extremely grateful to our sweet friends for this opportunity. Gig ’em!  And…did I mention Kaston is turning 17!! WHAT IN THE WORLD…HOW DID THAT HAPPEN??

We also wanted to say thank-you so so much to those of you who have made deposits into Kaston’s benefit account. We appreciate your generosity more than you know.  It definitely helps ease one more burden on our plate, especially in this season of our lives we are going through. We have about $500 in there and that will help us so much on this trip! We do have to pay to stay at the RMDH, and then of course we’ll have gas and food expenses to cover, so that will help ease the burden for sure. Kaston’s insurance does not provide any travel allotment at all, so all of it comes out of our pocket.  And whatever is left over will carry over into his January visit.
His benefit account is at Amarillo National Bank and we set up a Paypal account that is attached to that bank info. The email to use is kastonlane@gmail.com.

Thank-you to everyone that asks about him and prays for him regularly, especially the sweet Pastor at our community church that the kids go to youth group at and his congregation.  They pray for him every week in church and in their Bible study classes.  We absolutely love our community and are blessed to live where we do.

Will of course provide updates as we continue this journey over the coming weeks.

the Snyders