2015 Update: Single Ventricle Survivorship Clinic, New Pediatrician, and 4th Grade!

I realize that people read this blog and learn about Jack's history- but wonder about how he is doing now. I myself am always thinking about those HLHS'ers that are living lives as teenagers and adults and get curious about their lifestyles, limitations and abilities. So here's an update on our little Jack.

Jack is currently 9 years old, and getting ready for the 4th grade. He is very active, never naps- and is constantly moving. I'm always surprised at how much energy he has. He wears me out. This summer I have been taking Jack on hikes with me. We live at a relatively high elevation as it is, so getting up in the mountains should be taxing on Jack, but he does so well. I'm so proud of him for pushing along and making it to the destination of each hike.

Last weekend we did Timpanogos. The hike to the caves is a perpetual incline and a mile and a half long. You gain 1092ft in elevation and finish at 6,400ft. Jack did GREAT. We only a rested a few times and he felt great when he got to the top. Not to mention the caves. He couldn't stop talking to the guide and was basically jumping up and down during the whole tour.

 Another huge event was our first visit to the Single Ventricle Survivorship Clinic at Primary Children's. They have started a clinic specifically for single ventricle kids to study how the Fontan affects the rest of the organs long term. So before our visit we had a number of tests.

1. DXA Scan, where they scan his body to view his skeleton and the "age" of his bones.
2. Stool sample... fun
3. Blood draw... ALWAYS a treat
4. Wrist X-Ray
5. Liver ultrasound
6. Exercise test
7. Lung test

After completing these test we meet at the clinic with the Liver Team, the Endocrinology Team and the Heart Team. Here is what we learned from each:

Liver Team: Jack's liver is experiencing some expected back flow of blood. (As most fontan patients do.) This backed up blood causes the liver to create scar tissue, the scar tissue can change the shape and texture of the liver, it can cause nodules which could turn into tumors on the liver. This is something they watch for with all fontan patients. Jack's isn't severe, but it is the very mild, beginning stages of liver disease.

Endocrinology Team: Jack is growing just fine. He is skinny, but Josh and I aren't huge humans either. His development is normal. The Dr. recommended he get extra calcium and Vitamin D. She didn't endorse SUN bathing, but told me that a healthy dose of sun each day is good. We started Jack on one TUMS a day for calcium, because he doesn't drink a lot of milk. This is prime bone building time, so we want to take care.

Heart Team: The heart team informed us that Jack's lungs are not expanding all the way, thus limiting his endurance. They recommended he get some good aerobic exercise and controlled breathing practice to help strengthen his lungs. We have enrolled him in swimming lessons. The deep breathing involved with swimming will be beneficial. I worried about pushing Jack to hard and Dr. Menon said "you can't break him.. he's not going to have a heart attack... these muscles are meant to be exercised." So I felt better after he said that. Also, Jack's fenestration never closed after his fontan. Dr. Menon said it might help him if we closed it. Jack freaked out a little. We explained it is just a cath, and not a surgery. It's very evident that he is much more present at Dr. appointments that he used to be. We will leave it up to Dr. Su, Jack's cardiologist, to whether or not we will proceed with closing the fenestration. Then Dr. Menon explained that it wouldn't be a BAD idea to have a formal evaluation for ADHD. Jack for SURE has a short attention span and can't hold still or be quiet for very long. I don't want to hurry and get him on meds, but learning about mood and behavior will certainly help in that department. They said that lots of kids that have spent time on bypass struggle with attention disorders. Lastly, Jack's Hepatitis B vaccine didn't stick, so we need to do that again. Apparently that has been happening with these kids. Weird.

So we have started pushing Jack a little harder, encouraging him to go further even when he is a littler tired. It's nice to see that he CAN do it, and he DOESN'T collapse. He is very capable and it gives me comfort to think that we are making his organs stronger and helping him sustain.

These kids are incredible. I love hearing about them progressing and growing. I would love to hear from any of you who are further along in life with HLHS'ers, whether it be the readers or children of the readers... I would love to hear from you. Thank you all for reading and staying in touch during this life-long journey of a boy with Hypoplastic Left Heart Syndrome.


Unknown said…
Reading this made me feel so much better ,I am 6months pregnant and I am having a little girl ,but the Doctors found that she has HLHS, my husband and I didn't know what to do ,but now we have decided to give our little girl a chance and do the surgery. We are scared to see what will happened but as parents you have to be strong for your children.
Anonymous said…
Awesome kiddo! Keep up the good work, buddy!

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