Limberty

After hearing that she would no longer need to see the hematologist because her platelet levels were normal, and the pediatrician would just need to monitor her for the next year, I knew we were also going to get the stamp of excellence from the cardiologist.  We had gotten through our morning appointment unscathed.  Yes!

Waiting room shenanigans

Yesterday was a long day.  It started at 8 am with baby baths, followed by my mom coming to town early to remove a splinter from my oldest daughter's foot (I tried but because I'm too stubborn to buy reading glasses I just couldn't see that splinter).  On Clara's doctor visit days I usually ask my mom to come assist with Lxkas. Plus, I appreciate having an extra set of ears in circumstances where the doctors start tossing medical jargon at me and I can't catch it all by myself.

As was the case during our afternoon appointment when the cardiologist was talking about TR levels.  I stopped her to ask what the acronym was and as soon as it started spilling out of her mouth I shook my head and asked her to carry on.

The gist of her medical speak was that the pressure levels in Clara's right lung are still high.  Because they have been consistently high 3 times now there is a good chance she is developing pulmonary hypertension.

In a few weeks Clara is scheduled to have a heart catheterization, in which they will insert a catheter through a leg vein and run it to her heart.  Once in place, the doctor will get pressure readings and be able to make a determination as to what is causing the blood pressure in her lung to be high. It could be too much blood swishing around in her chamber, which would be the best news, or it could be the start of pulmonary hypertension, which would be okay news because at that stage it would still be reversible.  Worse case scenario would be she has developed a later stage of pulmonary hypertension which can be somewhat managed with medications and lifestyle changes, but leads to a shortened lifespan.  The cardiologist's hunch is the beginning stage.

 If the doctor can, he will patch the hole in her heart with an umbrella type patch since the catheter will already be in place.  This would require an overnight stay.  If he can't make the patch work, which I would guess might be due to her size and age (?) then the doctors will want to schedule open heart surgery to close her ASD and end the blood pressure problem so that she doesn't develop more serious issues.

I'm all for closing the ASD, but the thought of Clara being put under with anesthesia is haunting me.  She's 13 pounds, for goodness sake!  And she's... my baby.  But, we don't have a choice, and I am thankful that a medical team has found and been monitoring this issue so that my sweet girl will be healed.  

Clara's provider was here today and I'm glad because I needed to talk to someone who understands.  She has become my sounding board and adviser.  She gave me some pointers to bring up with the doctor during our pre-admission meeting and she let me know she was here for me.  It means a lot to me.  And I know she's scared with me.  She lost her son who also had Down syndrome when he was 10 due to a reaction to Demerol.   I don't know how she holds herself together so well when she sees other families going through this.  She is a strong woman.

She also made Clara some leg bands to keep her legs from flailing every way outward they can.  They limit her limberty (yes, I made that up.  Her liberty to be limber) so she can develop her muscles the proper way.  

I'm still digesting yesterday.  I feel like I need a big scream from a high mountain.  However, there are no mountains in Oklahoma.  I just know there is build-up inside me that continues to amass and somehow it will find a way out prior to the morning of her heart cath.  

leg band