Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Friday, July 17, 2009

The future.

Lately it seems like many are wondering what Gator's next step is. We are living such a normal life that no one would know that he is medically fragile. He "looks" healthy to so many, including us that it is nice forgetting that he will need more surgeries and medical treatments. So this is the synopsis.
Currently Gator is doing better than ever. His Dig and summer is giving him just the boost it takes to feel stellar. His saturation levels are in the high 80's to low 90's. He dips sometimes, but for the most part is doing really well. He was weighed currently and is about 26.4 LBS. That is good news because unless he goes into heart failure we are just supposed to pack on the pounds. He needs to be at least 15 kilos or 33 ish Lbs for his third stage surgery the Fontan. He doesn't go back to Cardiology until Nov. Now this could be his final surgery for quite some time. Although we have heard that because the right side of the heart, the side that Gator has, is not smooth muscle it will eventually wear out. Now that could be at any time for him, it could be one year, five years or it could be many many years post op of the Fontan. We just don't know because there are not many HLHS kids out there with their original anatomy. We did have the opportunity to meet a fantastic gal at the IHH picnic who is 23, married, going to collage, and just got the green light to have children. She has HLHS and also has her original repaired anatomy. It was so cool to meet her. It was also very inspiring. So it is sit an wait at this point. Gator will have his ENT consultation at the end of this month. I think it will resolve a lot of problems if we do have tubes put in. He will not have as many or any infections which will mean no antibiotics which means no c-diff. His last antibiotic seems to have passed through his system without a problem.(knock on wood) So maybe it behind us.

So that is were we are.


Michelle said...

WAy to go Gator. So glad he is thriving right now...I know each week that comes and goes without issues, worry is the best week ever! Ipray he does his thing til November and the surgery goes perfect. He is a brave soldier!

Mom of twins ♥ said...

It is good to hear he is doing so well right now! Keep up the good work.

berrymom said...

Thank you for the update. I have been wondering what the next hurdle is. I am so glad to hear he is doing well and I hope those tubes help! Love you!

J.B. said...

Oooh, I hate sitting and waiting. It is so good to hear that he is doing so well though.

Andrea said...

Wow, so much of that is just greek to me. I just look at Gator and think he is a happy and healthy kid and don't think a lot about all of the things that you must watch and worry about.

Thinking about you and your family lots though and sending a big, big hug!

The Curtis Family said...

I can't believe that his O2 levels are that high! Ethan has his cardiology next week. At his last 6 month appointment they said that this was when they would start talking about the Fontan. However, he is only 25.11 lbs. It will be interesting to see what the MD's say. I am glad that your little man is doing so well. Keep up the great work!