Kacey Update

dsorrent

Hey all,
 Well, it's now Saturday.  Here's the update.  Kacey was stable in Greenville Memorial on the Prostaglandin which was keeping her Ductus open.  Her temperature was high and she had a relatively high respitory rate (~100) but the belief is that these 2 items were side effects of the Prostiglandin.  Wednesday they flew Kacey down to MUSC in Charleston, which we then followed by car.  There's several cardiological specialists down here and they wanted to try some things BEFORE putting Kacey under the knife to see what kind of results they get and to see if it's possible that she may not need the initial surgery.  When we arrived Doctor Atz went over Kacey's case with us and explained that in a normal heart, the right side of it is 50% occupied by atrium and 50% by ventricle.  In Kacey's heart, the overall size of the right side is normal, however, the division of it is about 90-95% atrium and 10-5% of ventricle.  In seeing this on paper, Dr. Atz said he does not believe the right ventricle is strong enough to pump enough blood in a forward motion through the pulmonary artery to get to the lungs, however, he said on paper, it should not be working at all.  But, since it appears to be doing SOME work, he wanted to try to administer Nitric Oxide and see what happens.  Nitric Oxide is a naturally occuring gas in our bodies.  It has no side/adverse affects on the body, however, what it does do is that it relaxes all of the arteries/veins absorbed by it.  As we saw in Greenville Memorial, when the Ductus started to close, her Oxygen saturation started to drop indicating that there was decrease blood flow through the lungs to absorb oxygen.  Basically there are really 2 scenario's which can cause this.  1)  The right ventricle is not strong enough to pump the required amount of blood into the lungs to absorb oxygen, OR 2)  The pulmonary arteries, which the blood flows through to get from the heart to the lungs, are contricted not allowing enough blood to flow through them.  Now, when a child is born, these arteries are EXTREMELY small since they aren't utilized in the womb since the lungs are not providing the oxygen.  They expand through use and over time (usually first 2-4 weeks of life).  By looking at her heart on paper indicates that option #1 is more than likely the problem, however, the doctor's opinion is, what if it's really option #2?  So, in order to rule out option #2, they administer Nitric Oxide which relaxes those pulmonary arteries and they take the child off Prostiglandin again to allow the Ductus to close.  In the event the oxygen saturation goes down due to the ductus closing, they can easily put her back on the Prostiglandin to re-open the Ductus.  Expectation is that the Ductus will close over the course of 4-5 days.  The Nitric Oxide is administered with a mix of Oxygen (40%) through those nasal "plugs" to ensure direct inhalation of the gasses.
 
 So, almost immediately after administering Nitric Oxide on Wednesday, her respitory dropped from arounsd 100 to a normal range of 20-30 and her temperature is now in the normal range.  So it appears the Prostiglandin was at least partially responsible for those issues.  Well, today is now Saturday and Kacey has not had surgery yet.  We met with the doctor yesterday as he did an echocardiogram to check the status of the ductus and he said it was "significantly" smaller than it was when we started this, but it's not entirely closed yet.  However, with how little it is still open, he's fascinated at how there's been no change in her oxygen saturation levels and we're seeing significant forward flow through the pulmonary artery which is indicating that although she has possibly the smallest right ventricle ever, that it's somehow managing to push enough blood through the pulmonary arteries into the lungs.  He's anxious to see what her levels are once the ductus closes completely, however, at this point he said he has to "eat his original words" and it LOOKS like she might not need the Blalock Taussig Shunt as originally thought (i.e. no surgery at this point).  But, we need for the ductus to close more to confirm that.  I asked what about future surgeries (i.e. Glenn's Shunt @ 6-12 months of age or the Fontan Tunnel @ 2-3 years of age) and he said due to the circumstances of how well she is doing despite reasonable explanation, it's basically impossible to determine if she will ever need those surgeries.  So, if the ductus closes and they ween her off of the Nitric Oxide and Oxygen, the next step will get her to feed from a bottle, and once she does that successfully, she can come home with us.  We'll need to have her monitored "semi-closely" (i.e. not daily) over the next couple months to see how she does in order to figure out if she will need those future surgeries or not.
 
 As far as her feeding, she's been on breast milk basically since last Monday or so, administered through a tube to her stomach.  She started at 1cc/hour and last night she was up to 19cc/hour and tolerating it quite well.  Today they will start to have her breast milk fortified with a supplement to increase calorie intake.
 
 So, here's where we are.  We expect the ductus to close over the course of the next 48 hours.  If it closes and her O2 saturations stay up, they will ween her off of the Nitric Oxide and Oxygen.  Provided she's still stable she will NOT need the Blalock Taussig Shunt surgery. Then she will be able to start bottle feeding and once she has that down, we can go home!  So, we're not out of the woods yet, but we're really close now.
 
 Many parents experience pride in their child as they first learn to walk or first learn to talk.  I don't think I'll ever be more proud of my daughter than I am now at her ability to do so much with so little, all on her own.

Thank you all for your thoughts and prayers.  Something is paying off somewhere.

NoisyMonkey

wow, thats a whole lot of reading.. and I dont even know who this "Kacey" is.. are they your daughter? babies in the hospital sucks.. my nephew had holes in his heart.. then abd blood.. then crappy lungs.. and then something with his throat... but hes like 3 now.. and getting better..

mapshawk

Hi, i am a parent too and i can only say one thing:

I Hope she'll get better and better, even if i could never understand the pain you went through I can understand the joy you are feeling and the pride you take in your daughter, she sounds like a strong one  anyways i'll remember her in my prayers  keep posting new updates on her

analogue

What does it have to do with the EQ2 beta ?
Should we flood this section with all the sadness of the world ?

--
Best to Worst list of MMOs :
Bought : AO, EVE, PS, Lineage II, Lineage, Neocron, StarPeace, Horizons, DAOC
Tried : WoW, Ryzom, SWG, AC2, E&B, RO, The Sims Online, EQ, Shadowbane

Exekile

Dang

I really can't even begin to understand how hard this is for you.
I REALLY really hope she will get better, Which she probably will.
I'll pray for her.