Friday, February 24, 2012

Pressure Highs & Lows


Yesterday Kimble had his cardiology appointment. It's been four months since his last visit, and it felt like forever. Most especially the last few weeks, when he started having blue lips on a frequent basis.  I was really anxious for the results of the echocardiogram (which is done at every appointment) to either calm my worries, or else prove that I was validated in my worrying.

It calmed my worries.  Kimble's heart is doing great.  The doctor didn't see anything concerning.  Kimble is thriving.  What great news.

So why the blue lips?  Here is what's happening with Kimble's blood flow: He has a system regulated with high pressure and low pressure.  The low pressure bloodflow is coming from the superior vena cava (SVC) that was rerouted from taking the blood to the right heart, and since his last surgery, has been taking the blood directly to the lungs, bypassing the right heart.  The high pressure bloodflow  is coming from the right heart, via the pulmonary valve/artery (technically Kimble doesn't have a pulmonary valve...it's just a ballooned-through opening) and going to the lungs.  This is all the bloodflow from the bottom half of Kimble's body.

What is happening, is when the blood coming from the heart pulses through the pulmonary artery and into the lungs, because it is flowing on high pressure, it makes the low pressure blood (coming from the upper part of the body via the SVC) wait it's turn. Thus, there is a pause, or dip, in the waveform, and as a result, the upper body could show signs of low saturation, thus causing Kimble's lips to turn blue.


The 'Ah-ha' moment, for me, came next.  Our doctor said that because there is plenty of bloodflow coming from the right heart (enough to be a bully and cause the low pressure bloodflow to wait it's turn) it confirms the fact that Kimble's right heart has grown sufficiently to handle (and dominate) the bloodflow.  Could it handle all of his body's bloodflow?  Our doctor believes that is the next step.  Because the main goal for Kimble is to have as much of a chance at a normal life as possible.  This means  that if there is an opportunity to give him a better functioning heart, we'll do it.

Now that Kimble's heart has had two years to grow, we see remarkable potential.  Remember before he was born...his right ventricle basically had no blood flowing through it, and thus it was unformed.  It was the hope that if they tweaked a few other things, and got blood flowing through it, that the ventricle would relax and the muscle would grow, and it would be capable of pumping blood.  Well, that is where we are now.  His heart measurements are within the normal parameters.  Truly a miracle.


We still have the stubborn tricuspid valve, which is the opening between the right atrium and the right ventricle.  It was this tricuspid valve that was the basis for all of Kimble's heart problems, since it was so defective that it didn't allow blood to even get in the right ventricle.  Things have changed, but that valve is still a sticky situation.  The doctor's will have to work around it, but they think there is a solution.

For Kimble's next surgery, they want to REVERSE the procedure they did the last surgery, which was rerouting the SVC from the heart and putting it directly on the pulmonary valve going to the lungs.  This procedure was called The Glenn.    A reversal of The Glenn isn't commonly done, supporting the fact that Kimble is indeed, unique.  Once reversed, all of Kimble's bloodflow will be pumped the same way yours and mine gets pumped.  No rerouting.  Now, his heart isn't perfect like ours is.  It still has its defects.  But hopefully it'll be workable.

This is scary to me.  Why?  Because it would be putting a lot of pressure on his defective heart.  If his heart can't handle it, he would go into immediate heart failure.  Or, suppose he does fine, but the bigger and older he gets, and more active he gets, will there come a time when it's just too much for his heart to handle?  I'm worried that this will happen.

Of course, we can't see into the future, so I need to have faith that the best thing will be done.  There are steps the surgeons can take, in helping to alleviate the pressure buildup, and so on.  I know they will do everything they can to give Kimble the best possible chance for an active and healthy life.

Here's the plan.  Sometime towards the beginning of fall (September-ish) we'll have Kimble undergo some Cath-Lab procedures to get all the accurate measurements, flows, pressures, etc of his heart, as well as 3d MRIs and the such.  The results of those tests will determine if his heart would handle the reversal, and how they will go about keeping the pressures stable.  Then, we will decide on a date for his surgery.  The good news is, that unless there is an emergency situation, we get to pick when this surgery will happen.  We can choose October or November or December or whenever it fits into our schedules.  Once again, I get to plan and prepare..which I like (and need) to do.

This is hard for me.  Going through all the emotions and trials relating to Kimble's mortality.  Ugh..  So hard.  But we'll do it.  Because it needs to be done.

9 comments:

Jen said...

Isn't medical science amazing? I am so glad to hear such HUGE news! So.... are all of the issues now with valves? Did I read that right? So awesome when you get to that point, because if the rest of the structures are function and living, then you're in good shape! And with the advances they're making in laproscopic valve replacements, he may not face too many more completely "open heart" procedures! What a little miracle! So happy for your family!

Shavonne said...

You'll have all our prayers with you and whatever else you need from us! What good and hopeful news!

Ryan said...

So glad to hear that things look good. Thanks for the explanation of everything for us non-medical folk. We'll just keep praying and hoping and thinking of you guys. Lots of love and hope you are dealing with the "worst (sweetest) kid in the world". Love, Nicki

Jude said...

I try to understand what is going on, but it's mostly, way beyond me. It does, however, sound like the little man is doing really well, and that is great news. I am so pleased for you all and will continue thinking of you and wishing all the best for you. Jude.x

Karen and Matt said...

Truly a miracle, such great news! continuing to send thoughts and prayers your way!

Colleen said...

It sounds like such great news! Kimble is a testimony that miracles can happen every day! I definitely would feel like you, scared at the uncertainties. What a gift it is that you know you all are in Heavenly Father's hands. Can you imagine what going through all this would be like without your faith? We will continue to keep Kimble and his precious heart in our prayers, and you too!

Becky said...

So happy that his heart is doing amazingly well. What a blessing. I don't blame you for your worries. Who wouldn't. Hooray for good news!

Jeff and Lori said...

It is sobering to have a sweet baby's quality of life dependent on your decisions. All I know how to do is find out everything thing I can think of, and then pray and pray some more. And it definitely sounds like you've educated yourself thoroughly. I know that through your research and inspiration and with guidance of fantastic doctors, you will make great decisions in Kimble's behalf. He's lucky to have a mommy like you! Thinking of you and Kimble tonight.

lilsophie said...

Prayers for Kimble and your family!