Houston!

[Mommyto3Boys]

Ok - we've arrived and we're about 5 minutes from Texas Children's Hospital at the Marriott Springhill Suites Medical Center - very nice! It's very hot outside, and we're thinking of going down to Katy, TX (45 minutes away) to visit the Rainforest Cafe - thinking the boys are going to enjoy that.

Speaking of, both kids, Zak and Quest, are both going to be seen tomorrow (one at 9am and one at 2:20pm) then we're meeting with the cardiomyopathy team afterwards. Extremely nervous, but nothing can be as bad as the initial shock, and this doctor will at least give us a treatment plan! LOL

I'll keep everyone updated!

Marki

[heather]

Glad you made it safely! Houston is very hot, but the thing that got me was the humidity there!! Yes, the Rainforest Cafe is a must!! Have fun there and keep us posted on the appt. news!

[Reenie]

I hope you have a great time tonight. Please let us know how it goes tomorrow.

[EmilysMom]

Good luck Marki. Thinking of you today.

[mflanagn]

Good luck and only good vibes going your way. We visisted a rain forest cafe in Florida last year. It was a lot of fun, but a little pricey. The kids really got a kick out of the place.

[Mommyto3Boys]

Ok - we saw Dr. Towbin and his team today - the day we had been waiting for so long and bam, it's over! LOL

First off, I have to say the people at Texas Children's Hospital are wonderful - I have never before encountered a place where everyone was aimed at making us comfortable, so I'm impressed.

We originally had one appointment at 9a (Zak) and the other one at 2:20p (Quest) but when we arrived at 8:30a, the ladies at the front desk said it was ridiculous to make us wait that long for both echos, so they went ahead and signed them both in - and coordinated it with the back for us. Both boys had an echo, x-rays and an ekg - and are now both holter monitored as well.

Zak has severe asymmetric hypertrophy with a septum at 2.6cm (measurements were 24.5mm - 26mm) but no obstruction or reduced function. His Z score for his septum is incredibly high - but the ventricle size is perfect right now. We were told that with proper care, treatment and careful rule-monitoring (as in no competitive sports) Zak should live a relatively normal life. Since he is asymptomatic he's only going to be on medication - and his dosage MAY increase, but it depends on the holter monitor. During the echo he fell asleep and his heartrate was at 56, so he's not sure if he can increase the beta-blocker right now. No rhythm problems as of right now, though he is too young to put on the treadmill as of yet. Dr. Towbin told us that although the literature estimates death rates from HCM at 6% - 10% annually, it's really more like .1% - many of which are from undiagnosed cases. Surgery is always a last resort, and an ICD is not out of the question later. Also, he said 4 years old is a "honeymoon period" and children rarely suffer from SCD during this age.

Quest has minimal thickening but, of course, is considered to have this disease as well. He'll be put on a beta-blocker (same dosage as Zak) and monitored as well.

Dr. Towbin wants to see us every 3 months right now - and since we don't have a cardiologist in El Paso (one we saw who is an ***, one is his partner and the other our pediatrician told us to stay away from) - it looks like we're going to go ahead and make the move to Houston next month. The idea of being able to see Dr. Towbin on a regular basis sounds really good to me - and the entire family is thinking of making the move with us, so it may work out well this way. So, other than dropping off the holter tomorrow, it looks like we're good for 3 months! Well, until my husbands appointment on August 11th. ;)

Take care!
Marki

[mbcube]

Exhale - Isn't knowledge wonderful? :p
Glad you got the answers and peace of mind you sought in Houston.
Our best to all your family

[Reenie]

I'm really relieved you've finally got some answers. So go take a bubble bath and try to forget the anxiety of the past few weeks. :)

[gfox42]

Hi Marki,
Good to hear -- and I'm sure you're relieved! Relax a little!

Gordon