Wednesday, April 15, 2009

As if my life couldn't get any crazier! We will be speaking about Baylee today!

Okay... until today I hadn't thoroughly explored all of the links on Google when I put in Right Ventricular Hypertrophy. Let's just say I wish I hadn't, but I'm glad I did because it makes me realize how serious this condition is!

As I'm typing this in and reading all of the links I came across one little paragraph that has changed my life... the way I think... and the emotions started rolling... right down my face.

"The median survival rate for primary pulmonary hypertension after diagnosis is less than 2 1/2 years. Right Ventricular Hypertrophy is a condition of advanced PPH and therefore, once it develops, the survival rate is shorter. Medical management of PPH consists of anticoagulants, oral vasodilators (which are effective in only 20 - 25% of cases), continuous intravenous infusions of prostacyclin, diuretics, and supplemental oxygen."

OMG....OMG.... so, I freak out of course and call my Pediatrician's office and talk to the nurse. She freaked out that I was researching and got our Echo appt in Lowell (here by our house - it's a branch of AR Children's) on May 20th. WHAT? Can you not get her in sooner... so I call down there and see if I can get on a cancellation list. Well, they don't have one since they have 5,000 Cardio patients. But, she said I could call everyday and see if they have any cancellations. The girl that told me this is the only scheduler and I guarantee I will call so many times she will dream of me.. and my name!

Britt's aunt suggested that I take her to Children's ER and demand to see someone in Cardiology. I'm thinking I might just do that. After all, her appt would get moved up just a tad don't ya think?

I normally don't ask for much, but can you guys PLEASE pray for Baylee? Pass around my blogspot and do whatever you can to get people to pray for her!

I couldn't imagine my life without her... as any Mother would feel about their child!

Hugs - Tiffany


Ron said...

of course, she is in our continuing prayers .. as are you ..

Bina said...

OMG!! Holy goodness... how much more can you take? As if stressing over Blair's surgery wasn't enough... poor little Baylee... of course, you have my prayers and love in this time... I will spread the word!


Anonymous said...

We will keep you all in our prayers. I have found that sometimes, the ER thing is exactly what you need to do to get somebody's attention. Or, just walk into the Cardio's office and tell them you are NOT leaving until she has an echo and see's the Cardio. They have people on call if there is an emergency - don't let them tell you there is nobody to do it. We will be praying for you! Hugs from IL.

Steph and Christopher OurLittleMan

OHN said...

When it comes to our kids I pull out all the stops. I don't know where you live but is there a University Medical Center anywhere near you?

I would call all the pediatric cardiologists within 100 miles and tell them what has been going on and tell them you are desperate to get her in ASAP.

Evil Twin's Wife said...

OMWord! Please get her seen as soon as you can. I am prayer for her and for you.

Small Town Girl said...

Okay, holy crap that's scary! I'm sure glad you got the echo moved up to tomorrow. It will be somewhat of a relief after that's done. At least they can tell you what you're really looking at for treatment. I will most definitely be praying for you and BOTH your girls. You're going to end up seeing the country just taking them to Dr. appointments!

Christina Self Wood said...

Tiffany my husband and I will definately be praying for you guys! Hang in there. One of my favorite verses that always gives me comfort is 'Cast thy burden upon the Lord, and He
shall sustain thee'

Christina Self Wood

Bird said...

Prayers stat for Ms. Baylee!

You know, you should just call the big Children's and schedule an appointment. In bigger clinics they can usually do it lickety split.

And I dont' know if Baylee is going to have this serious condition, but I've known plenty of heart babies that have beaten the odds, so don't get too wrapped up in the statistics. Hell, Charlie's chances of making it past day one were less than ten percent!

pixiemama said...

First of all, my reader needs a swift kick in the pants, because posts are not coming through quickly and I wish I had seen this THE MOMENT you posted it.

I know you're a couple days closer to the info you need now, but PLEASE, PLEASE, I beg of you, skip the google research on this one. Just get the facts about your kiddo. Much internet info (particularly about serious conditions) is worst case scenario.

Beyond that, know that your beautiful girls are in our thoughts and prayers.

hugs to you, friend.