Monday, February 26, 2018

Fontan


We had our follow up cardiology appointed this past Friday. This was a follow up appointment from the heart cath that was done in January. It went as expected. They would like to do Zachary’s next heart surgery, the Fontan. We asked if we would be able to wait until June so all the boys would be out of school and we can try to get in a little summer vacation before jumping into this next stage in Zachary’s life. Our cardiologist seems to think we should be able to wait till June.
We scheduled a consult appointment with Zachary’s cardio surgeon for the end of March and one last follow up appointment with his cardiologist in May. We are praying we will be able to schedule the surgery for the first week of June.
David and I were able to attend a heart symposium on the Fontan Procedure here in Scottsdale this past Sunday. It was amazing! It was all day 7:30am-630pm. A fire hose of information. There were surgeons, intensivists, hospitalists, radiologists and cardiologists from all over the world: Germany, the Netherlands, Australia, New Zealand, Boston, Philly, LA, Stanford and many other places.
The topic for Sunday was all about the Fontan procedure and how it affects kids in the short term and long term. Zachary’s heart condition will never be able to be “fixed” without either a heart transplant or some other form of a pump that makes up the left side of his heart which is missing. He is basically living with a chronic disease with no cure.
We learned a TON at this conference and we are still processing everything. (We had dreams that night of Protein Losing Enteropathy, Cyanosis, Chylothorax ...) We learned a lot about what to expect after surgery now and years to come.
This is going to be a long road, as it already has been. We have made it this far by the Grace of God and with that we keep going. As I write this my heart hurts knowing what is coming soon for Zachary.  All the unknowns, how will he do during surgery, how will he do post op, how will he do when we bring him home, how will his brothers handle it, how will he do the next ten years, while they have any advancement for when he needs intervention down the road, how will all the other organs do after his blood circulation is changed? Those are just a few questions we now have. We know God has him in the palm of His hands so we try and rest and know whatever happens, it’s for God's glory even if we don’t understand the “why”.



x

Tuesday, January 16, 2018

Cath results

He’s out.   Everything went well.  They were able to place a coal in a collateral artery which was good. He is ready to have his next heart surgery.  We are looking at surgery spring/summer this year. The cardiologist is going to meet with the cardio surgeon to discuss a plan.  Thank you all for praying for him today!   We will update when we know more of when the heart surgery will be.  

Sunday, January 14, 2018

Heart Cath

We are excited we have not had to update the blog very much lately! 

We would like to update everyone with how Zachary is doing.  He has been doing amazing this past year.  He’s been going to preschool and learning so much.   He is so smart and learns so quickly. (He just wrote his name out this week. Oh Yes!)   This is just amazing to think back to when the doctors gave us no hope.  Well, look at him now.  He’s thriving.  He’s always happy and loves playing with his brothers.  

The last couple of months we have noticed Zachary has been getting worn out a lot quicker.  This means when he plays with his brothers, he is having to stop and rest a lot more.  His body/heart can’t keep up. The teachers at his preschool have noticed this as well.  We had a followed up appointment with Zachary’s cardiologist in December and decided to schedule a Heart Cath for February 8th.  This would be a procedure where they send a scope to his heart to measure all different pressures and get other information they need to see how his heart is functioning.  

Thursday evening last week Zachary had a little episode of tachycardia.  He was breathing fast and was out of breath and threw up because he was trying to breath.  We took his vital signs and his heart rate was 145 and his sats were low 70s.  Those are not good vital signs for those who are not familiar with that.   His normal is high 70 and heart rate about 107-115.  This happened again the following evening.   At this point I was in contact with his cardiologist and he said we should move his heart cath.   

Zachary will be going in for this procedure THIS coming Tuesday, January 16th at 8am.  Usually they would do this procedure and send you home, then based on the info they acquire they would then proceed with next steps like scheduling his next heart surgery etc.  

This is where we are asking for your prayers.   Depending on what they find, the doctors may decide to admit him to the hospital or may send him home.  If Zachary recovers well after the procedure, he may go  home. If he does not recover, he may require an overnight stay. He has gone home after previous heart caths, but then again, he has also required next day heart surgery before.There is a range of scenarios that could play out. The simplest is that there is a small pulmonary artery that the body created that is connecting the heart to the lungs (This would be in addition to his main pulmonary artery). The doctors and surgeons would block it because it causes a feedback loop so the oxygen enriched blood doesn’t get pushed out just circulates from the heart to and back again. This would ease the stress on the heart and lungs to allow him to grow a little bit more until the next heart surgery (growing = good).

A more complicated scenario requires the next heart surgery, which is called the Fontan Procedure. This will not be done on Tuesday, but at the next available OR time. Depending on the results of the heart cath, it could be Wednesday or it could be this summer.


We are so appreciative of everyone who has prayed for Zachary over the last 4 years.  We are so amazed we are still asking for your prayers.   There were many times we were not sure we would be here today.  Thank you from the bottom of our hearts for your continued prayers for our family.  


Thursday, October 12, 2017

Give Kids the World Village - Where We Stayed

Give Kids the World Village aka GKTW is an amazing resort for special needs families.  Here is a brief story about how this place came to be:

"The story of Give Kids The World begins with a little girl named Amy, a wish, and the desire of one man to make that wish come true.
Amy had leukemia and a wish to visit Orlando’s theme parks. To facilitate this wish, a respected hotelier was asked to provide a complimentary stay for Amy and her family. Although the hotelier gladly obliged, the remainder of Amy's travel plans took too long to arrange, and her wish was never granted. Time simply ran out, and Amy had passed away.
This unfulfilled wish inspired the hotelier to make a vow that no child in need would ever be failed again. That man was Henri Landwirth, and his desire to ensure that Amy's story would never repeat itself is a mission Give Kids The World has fulfilled since 1986." (more of the story here)

Since 1986, they have hosted over 154,000 familes with special needs.  Each family is hosted in one of the amazing villas on the property.  There is a Papa John's pizza on the property that you can order pizza ALL DAY LONG. There is a HUGE pool with fountains, a splash pad, and a pirate ship that when the sail was raised, they would play movies on it.

Everything at GKTW was geared for kids.

There was a coffee/donut cart that drove around giving families coffee and donuts. In the evening, the cart gave away cookies!

The ice cream shop opened up @ 8AM so you could have ice cream for breakfast. (Oh yes we did!!)

They had a cool arcade room with an interactive model train town and remote control boats.

And the helpers were so nice. Everywhere, there were volunteers helping families. They were always smiling and if they didn't have the answer, they would find out. This was especially true in the Dining Hall.

The dining hall was its own experience.  The volunteers would help each person take the tray, and guide them thru the buffet. Even the boys each had their own helper! The food was amazing and we were stuffed each time. (Think of a cruise line- it was good!)

Most of the tables in the Dining Hall were set at kids height so that even Zachary didn't need a booster.

Our villa was great. It was a two bedroom duplex with a full kitchen and washer/dryer. There was plenty of space for our family to spread out at night. The 'master bath' was in the kids' bathroom complete with a sweet Jacuzzi tub and separate shower.

In the Castle of Miracles, each of the special kids gets to have his own star. As mentioned previously, there are 154,000 stars in this castle.

For events, they have Halloween and Christmas every week so that every kid can experience them, especially if they won't be able to make it to the real holiday. It's a big party. Lots of candy and theme related games.

The local theme parks also send their characters for a more mellow interaction with the families.

What an amazing place! They truly give kids the world!



The boys and their amazing tub!


First night in our Villa!


This was the awesome soap in the kids bathroom  

The morning donut/coffee cart that came around the Village.

Donut and apple juice PLEASE!!!

He was a big fan!

Look carefully.   What do you see?  

The entrance to the dining hall

The carousel they have at GKTW

The amazing dining hall.  They had a balloon guy there this night!


One of the many parties they had at GKTW

ICE CREAM PALLACE 

UM..... no caption needed :-)






Giving Zachary's star to the "star fairy" at the Star Castle.
















Um, Mickey Kissed Me :-)




Zachary at the Star Castle 


Zachary's star is the first one right above his head

Last day :-(   Headed to the airport 

Ice Cream for BREAKFAST!!!

They had a robotics class from the local charter school come and let the GKTW kids play with the robots the class made!



Ice Cream for BREAKFAST!