It’s spring break here in Colorado and I am so thankful for the slow pace and days to adjust. I feel that the weather has been an expression of His mercy: the sun has been out all week and the sky has been clear. Little and I returned to Children’s yesterday for a check-up; my hope being that what we would learn would share the same clarity. Here’s what we learned:
- It quickly became clear that 30 min. of extra driving time is NOT enough to compensate for morning traffic in Denver.
- When dealing with doctors, there is a noticeable difference in one’s confidence level if you have just woken up after a night on the hospital couch or if you get ready at home and come into the hospital dressed like a human and wearing makeup.
- In the past three weeks Little has lost 14 pounds. Clearly it was time for that to stop; medications were adjusted.
- We met with the head of the Cardiomyopathy department and it was so helpful for understanding what is happening inside Little. The doctor I talked with yesterday is the same doctor I met when Little was first admitted at Children’s and the things she said yesterday were the same things she said Feb. 26. It is much easier to understand a doctor when you have slept and aren’t in shock over a diagnosis. Here’s what I now know… The typical presentation of Dilated Cardiomyopathy shows a heart with an enlarged left ventricle that has decreased function; the ventricle fills with blood but the “squeeze” isn’t strong enough to pump everything back out. The thing that makes Little’s situation extra “interesting” is that her left ventricle is shaped just like it should be but has decreased function; it’s hear right ventricle that is very large and it’s function is also decreased. According to the doctor this doesn’t really fit any other myopathy scenario she can think of. (We clearly like to keep life exciting.)
- Usually patients with this diagnosis have elevated heart rates. The heart’s squeeze is weak so usually it beats more times a minute trying to get everything out like it should. Not our Little’s heart! Her heart is beating a steady and slow rhythm. Every time a doctor listens through their stethoscope they shake their heads and mumble something about how good her heart sounds. She wore a monitor that recorded her heart for 24 hours and it showed that her heart rate could get up to 100 bpm; the doctor was encouraged by that but continues to be confounded by the slow steady beating as the norm.
- Phlebotomists lie.
- Because Little’s symptoms just don’t “add up,” the doctor wants to pursue more tests. They hope they can get some clarity by doing a MRI…both neuro and cardio. The MRI will give a clearer view of what’s going on inside and by doing an updated neurological scan we can see if there is a connection between her special brain and special heart.
So, nothing so new that we are reeling or rejoicing. It was helpful for the sake of clarity. I am grateful.
Things to pray as we continue along:
- Pray that Little will get her appetite back. She is really only eating one meal each day.
- Pray the MRI will allow the doctors to see what is causing this strange reaction in Little’s heart and that the next step will be clear.
- Pray that I will live TODAY and let tomorrow take care of itself.
- Pray that we can get the mask Little needs for her oxygen and that she will keep it on her face. I have not been sleeping because of the anxiousness that comes with knowing she keeps taking out her oxygen.
- Pray that starting back to school next week will go smoothly – for all three children but especially Little.
I am praying.
Thank you for sharing with us. We’re very glad to be updated and in the know. We will pray accordingly.
It is hard to focus on today and not think about tomorrow. I hope God sends you to the doctors that are wonderful for your family and give you the help you need.
Thank you for sharing. Continuing to pray. Luv u bunches!
Oh friend… praying for you right now.
Sent from my phone. Please forgive typos.
Thanks for the detailed update. I’ll keep praying!
Thanks for update-I’m not getting email. Praying.
I’ll keep praying for Lilly and for your physical strength? And peace.
When will the MRIs take place?
#6 – ha! Praying with y’all!