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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.

Monday, October 15, 2007

Today's appt.

While our news about today is better news than last week, we are not out of the blue.... I was a little early to our appointment today. We got to go right in. It was soooo nice. Alex did great through his echo, he didn't even cry. Then we spoke with Dr. Su. the function of his right ventricle is better. The drugs seem to be working or at least that is one of the theories. The other could be that he needed some more time to get better from the angioplasty. Needless to say, they like the numbers to be above 1000. Last visit Alex was at 700, this time he was 1500. While we wish that the numbers meant more they aren't really an indication that he is doing sooooo awesome, just a little better, we will take it.... So now we are moving in a positive direction. We also discussed his tricuspid valve. He has leakage that seems somewhat extreme and need repair. So our plan of action is to up Alex's dose of Enalipril to 1.5 ml 2xs daily and keep his other meds the same... We go back to an echo just like today's on November 5th. At this appointment we will see if there is some new improvement. If there is new and better improvement then we will try waiting a little longer for Alex's Glenn. If the hearts function stays the same we will then say that the meds have done all that they will do and we will schedule his Glenn. We hope the function improves more because now that we are adding the new repair of the tricuspid valve we are not just having that standard Glenn we are also having a very intense repair. They say that the Glenn is the easiest of the three planned surgeries, well now it is right with the others being very complicated. So tonight we are so thankful for this news. We are thankful for the fasting and prayers because we know it has helped so much, and is the reason he is improving. Sometimes I get a little hot and think we are doing so great and I know Heavenly Father wants me to stay humble and not get ahead. It is experiences such as these that I have a hard time with in the beginning but when things start going in the right direction again I am thankful for them.... It really puts things into perspective....Thanks again for all the help and prayers...

4 comments:

The Curtis Family said...

I am so glad that his heart function is improving. I hope that the meds continue to help him out. We've been thinking about you all day and hoping for the best. We will continue to keep you guys in our thoughts and prayers.

---Allison

Mike and Rebecca said...

I've been thinking of your appointment all day while I was at work. I'm glad that the meds seem to be working, its kinda tough going through all this stuff between surgeries, it seems that things can change so fast from one appointment to the next. Keep the faith...

Mike

Anonymous said...

That's great news Brynn. I'm so glad things are moving in the right direction. I will continue to keep Alex in my prayers.

Michele Kingsford

Anonymous said...

Hugs and prayers! Quietly thinking of you...

Love,
Joni