Frequently Asked Questions

8:56 pm CST November 27, 2009
Frequently Asked Questions about Jasper ***********************************

What is wrong with him ?

Jasper was born with a severe congenital heart defect. We knew about his heart defect half way through the pregnancy. Jasper has hypoplastic right heart syndrome, Double outlet right ventricle, pulmonary atresia and a VSD. Meaning his right ventricle was very small and didn't really work, his pulmonary valve was very narrow, and both his pulmonary valve and aorta come out of the right ventricle (Normally, the aorta arises from the left ventricle) and since his right ventricle wasn't really working a hole in between the two chambers helped the blood flow.

After Jasper was born it became apparent that he had airway issues. He has a floppy airway, known as Laryngomalacia (literally, "soft larynx"). That is why he had to have the tracheotomy. He hope his tracheostomy is temporary and will come out in a year or so.

**************** Why is he in the hospital?

We knew before Jasper was born that he would need multiple heart surgeries. He was admitted on the 12th of October 09' to have his heart repair. They did a surgery called a Biventricular repair, where they essentially make a 4 chamber heart. They scoop muscle out of the right ventricle and the theory is that over time with better blood flow the ventricle will grow become stronger and the person will have a 2 ventricle heart.

He is doing pretty well from a heart standpoint. He has had some setbacks due to infection. If it weren't for those infections we would be a lot further ahead. Also, his lungs are having a bit of a hard time for many reason. His body doesn't circulate like the normal person's and for that he is still on the vent and will go home on one.

**************** Why is his face big?

Jasper is just fat :-) Yeah fat babies!!!!

************************************ Will he get better?

We hope so! The outcome for babies 40 years ago with heart defects was always terminal. The advances they have made are amazing! It is tricky stuff though. Every patient has such a unique heart anatomy and every outcome is different. The pediatric heart surgeons and cardiologists dedicate their lives to improving the hearts of people like Jasper and advances are continuing to be made.

**************** Is he on a lot of medications?

Jasper is on pain meds from his past 3 heart surgeries and he is being slowly weaned off. He is also on a diuretic, lasix,, that is very common after surgery to keep fluid from building up, he will be weaned off that as well at some point. He is also on a medication for his heart to assist with pumping. And he is on meds for reflux

**************** How does he eat?

Jasper has a feeding tube through his stomach - a g-tube (gastrostomy tube_

**************** Will he ever eat by mouth?

We hope so! His main concern right now is making sure he gets nutrition so that he can recover and still grow.


Thursday sitting in his stroller for a change

Not on steroids, just fat :-)

thanksgiving 09' Children's cafeteria

mmm everything's good with gravy

POSTED BY JaspersMom

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