Team Travis: Appointment with Surgeon Team at Children's is set

Sunday, August 9, 2009

Appointment with Surgeon Team at Children's is set

We have our next appointment set for Aug 17th at 2:30pm. We are nervous and anxious to get our questions answered. Since finding out Travis has HLHS we have met/spoke with several people who have had a child/family member/friend with HLHS. I met one little miracle last night at a friends shower. She is almost 2 and is very vivacious. These stories have been giving us hope to get through this very scary stressful period. I can only pray that Travis has as much luck and strength as these little miracles!!! 70% of the time I am hopeful....30% I am scared to death.

Online stories have also been giving us some strength. We have been finding many pictures and videos of the actual surgery and aftermath (very graphic) online. Although they are ridiculously scary (to think that our baby will be put through this), I think it will help us in the long run be prepared to see our Travis in this condition after surgery.

Our major concerns right now are: financial means, if I can breastfeed, lodging in LA for the 3 month hospital stay (one mom said one parent can stay 24/7 in the room), and if we will have to take extended absences from our jobs (adding to the financial stress). Currently, I plan on being out on my original leave until Feb 1. Travis will need care after his release from the hospital so we need to look into the cost of a nurse/nanny vs. one of us staying home. I get overwhelmed easily by all this so I have been trying to keep myself busy. Roger has been very good at getting info off the internet (I still find it challenging to weed out all the sites). Here are a couple more that we like...

http://www.littlehearts.org/default.html

http://www.hopeforhlhs.com/index.html

Please continue your prayers....

1 comment:

Nana SueAugust 9, 2009 at 4:39 PM
I think this is a great way for you both to relay your feelings, struggles, hope and concerns along this journey. Just know that you have many, many friends & family praying for our little Travis. He will be a fighter, just like his Mom & Dad. God Bless you both.
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Travis Gary DiCarlo

Travis Gary DiCarlo, first son of Roger and Nicole DiCarlo, was born at San Diego Kaiser Hospital, October 23, 2009 with a Congenital Heart Defect known as Hypoplastic Left Heart Syndrome, or HLHS. The short explanation is that Travis was born with only half of a heart. In order for him to live, a series of three operations were planned.

Due to an infection, Travis had to have an additional open heart surgery to insert pulmonary artery bands on October 29, 2009. He had his Norwood Surgery on November 21, 2009. He was sent home on December 14, 2009 from Rady's Children Hospital of San Diego after spending his first 52 nights of life in the hospital.

After being home for several months, Travis was due to for his next surgery in the plan, the Glenn procedure. But the life of a cardiac kid can change in an instant and life doesn't always go as planned. Due to the anatomy of his heart and some rhythm issues, Travis had what the surgeons called Norwood part 2. They replaced his Sano Shunt with a bigger one, enlarged his pulmonary arteries and installed a pacemaker. This surgery was performed on May 3, 2010. Travis went home on May 17th, 2010.

Around Travis' first birthday in October his cardiologist detected some narrowing in his pulmonary artery and ordered a heart cath. The heart cath showed extensive narrowing in his aorta and his pulmonary artery. On February 17, 2011 Travis had his 4th open heart surgery. He was doing well with recovery until he suddenly went into cardiac arrest on Friday (2/18). After two hours of CPR Travis was placed on ECMO (a heart/lung bypass). Although his heart did begin to beat again on its own, his brain was damaged during the whole ordeal and he lost all brain function. We had to say goodbye to our beautiful boy on Saturday, February 19th. We miss our boy terribly.....