This isn’t the “official” diagnosis, but it’s as best as I can come to in layman’s terms to describe what this morning’s round of testing and consults showed. In essence, the PDA is still there, but it IS closing according to the measurements between February’s tests and todays tests. The doctor (who looks just a tweed bit like a cross between Bill Nye the Science Guy and Albert Einstein, except both of them got a hold of a little too much wacky tabacky and had a good time hootin’ it up) – could tell me unequivocally that her heart is NOT causing her symptoms. That is as good as i could hope for – a definite solid answer. It’s kind of sad, because I truly loved this doctor. his bedside manner is AMAZING, he is so thorough, and he’s not all hyped up about this drug or that drug or even fixing issues with drugs at all (he suits my hippy granola ways very well!), but alas, we only need to see him every 12-18 months for a couple years for followup.
She DOES still have an audible murmur, she IS still shunting some blood to the wrong artery, but it is NOT causing her body to work hard. The problem, and hence the title of this post, is that her body is ACTING like her heart is the problem. She is having symptoms that everyone would otherwise classify as CHF (congestive heart failure) – the paleness, discoloring, sweating, other random “Kendall-ities” – these are all concerning signs – until you look at her actual heart function and realize her heart is acting just fine. So it seems right now like we are still searching for a possible GI issue, metabolic issue, or autonomic issue. But Dr. T (heart doctor) sat and encouraged us to follow our guts. He has a daughter with multiple medical issues and says it took them more than a few years to eventually get their answer, and they questioned whether to keep looking for answers a few times, but it eventually came down to following their guts and their hearts, and they were able to get her the appropriate level of help. It was really truly encouraging and as weird as this may sound, I believe it was Divinely Inspired for me to hear that today. I have been questioning whether this is all just becoming a figment of my overactive imagination due to sleep deprivation, and Dr. T assured me that it most definitely was NOT in my head. She is having a very rough go of it – and while no one holds a crystal ball – all signs point to our next 6 months not being as crazy as her first 6 months. But it doesn’t mean that she is “fixed”. We just have to find the balance between looking at too small a picture of her overall health (too many sub-specialties) and missing the bigger picture of what she is dealing with. I am so glad we have Dr. Natalie to help with all that. She is a very good big picture looker-atter.
So here we sit for a few more hours waiting for her appointment with Dr. A to get the next step in the plan. This morning went WAY faster and smoother than any of us could have anticipated. Kendall smiled through the EKG testing and slept through the Echo – a true answer to prayer because both of those reactions gave us the BEST possible views of her heart with the different testing functions. So thank you all for the prayers sent up already today. If you get this update, please pray that Dr. A is able to clearly see what our next step should be and that he can guide us in a way that fits with what Ben and i are feeling on our own. (Not that I even know what that is, I just will know it when I hear it/feel it!)
Praise God for excellent doctors and for a sense of relief over the heart issues, and pray that we would continue to get a good sense of direction.
Praise also that my sister is home safe and sound with babies firmly intact for at least a couple more weeks! This was a HUGE worry last nite and it looks much much better today. I am AMAZED at the power of prayer.
Another HUGE praise – Kendall slept for 6 hours last nite! She has not done this in WEEKS and it was so very needed by Ben and i last nite. I don’t hold out a lot of hope that this trend will continue for very long, but at least for one nite, it was awesome.
So that’s what I know for right now.
Thanks for the wonderful encouraging comments, emails, and facebook wall posts. They put smiles on our faces and pep in our steps.
Will post more tonite after we get home and know a little more!
Have a wonderful Tuesday!
terra
woot!
By the way – I REALLY love your “terra-isms” – they are hysterical! Make me laugh right out loud. Wonkyfied; Wacky Tabacky; Picture Looker Atter, etc…. Love em!
The heart doctor sounds like a man to be trusted!
I’ve been checking in to see if you’ve had some good, or ANY, news this week, anything to give you more direction…at least someone could be UNEQUIVOCAL, finally, so the process of elimination continues. I pray so hard for sweet Kendall and all of you, and am so glad to hear that she is having more and more good hours/days and latching onto that bottle like a champ! You all WILL get there, keep the faith and trust that motherly/fatherly instinct. Looking forward to seeing you all out and about more and more in the warming weather! SPRING! It’s what we ALL need right about now! Oh, and a definitive diagnosis and plan and a baby all back to good health, an order of that, too, please!