Saturday, March 15, 2014

Kinsley Anne's Recovery

I am still just absolutely blown away with the support we've had throughout this week.  Kyle & I have always known that Kinsley Anne is a special little girl with a big life ahead, but I don't think we realized just how much others love her as well! Makes a mama's heart swell, let me tell you!

eating a cake pop... Katy, Stephen, & my parents had the CUTEST get well cake pops delivered to the hospital. and we loved them!

child life was great about bringing activities to her room. she wasn't really into them until the afternoon that we went home.
I knew that Kinsley Anne was feeling better when she wanted her lips on.

resting on the day of discharge

Kinsley loving on all her sweet friends! Aunt Carol brought her activities to play with as well as a huge bunny, Sophia the First doll, and a giraffe!!!

Kinsley Anne was discharged at ~545pm Thursday...right into the worst of Houston traffic (not to mention that the rodeo is in town), but I was probably never happier to sit in traffic....until Kinsley Anne announced that she needed to pee. HA! 

Kinsley and Daddy waiting on our car to pull up so we could leave!

I think it's safe to say we were all THRILLED to be leaving.

On the way home, we stopped for chewable Tylenol, since KA cannot have Motrin for an undetermined amount of time (bleeding risk).   We also stopped & picked up Little Caesar's $5 pizzas...yum!! Kinsley Anne asked no less than 5 times on Thursday to see her friend, Ava, that lives down the street from us. So, I texted her parents to let them know that we were on our way home & Ava and her family came over to greet her when we got home...they even brought her flowers!

Kinsley Anne has recovered really well. I've said several times that if it was me going through what she's gone through, I probably wouldn't have gotten off of the couch yet. But she acts like nothing ever happened.  Kids are so resilient!! She has asked why she has "brown spots" on her (bruises) but we have just told her that it's where the doctors fixed her heart and she seems OK with that explanation.  She has a little bruise on the right side of her neck and in her left groin.  These are from the venous access catheters that they used.  She also has a bigger bruise in her right groin, which is where her arterial access catheter was. 

a peek at her neck where the venous line was. so little! It's now bruised but will look great soon, I'm sure.

She only took 1 dose of Hycet in the hospital (Tylenol with codeine).  That helped her so much & I'm thankful that they were able to get that for her.  She has only had 2 doses of Tylenol since being home...she doesn't ask for it, but Kyle & I can tell when she starts to slow down & seems sore. 

As far as restrictions or instructions, she is still allowed to do a lot of things, which is good.  She is supposed to be taking it easy this weekend & will go back to school on Monday (with the teachers watching her closely).  She is not allowed to do any "straddle" toys, like a bike for example.  She is also not allowed to take a bath for a week.  She took a shower last night & thought it was very fun, because that's not her normal mode of bathing.

In regards to results from her cath & V/Q scan, we talked with Kinsley's cardiologist on Thursday before being discharged. The original measurements of her left pulmonary artery were 3.8 x 3 mm. THAT IS TINY.  The final measurement after ballooning was 5.5 x 5. Still small, but that's a big increase! It actually ~ doubled the blood flow.  The doctor said you can actually hear a murmur now that she has more blood flow.

Now the V/Q scan that she had on the day of discharge...what a test! It is done in nuclear radiology.  She had to lay on a table (very much like a CT scanner) & they papoosed her so that she couldn't move.  First, they put a mask on her so that she could breathe in a gas (Xenon) for ~2 minutes.  They took a LOT of pictures during this so that they could see how well she ventilates each lung.  Then, they injected some low dose radioactive dye in her IV & took 8 minutes worth of pictures to watch the blood flow into her lungs.  This test helps the doctor understand if both the ventilation and perfusion are decreased to her left lung or whether it's just the perfusion that is decreased.  If it just the perfusion that is decreased, that lets us know that we may need to do this ballooning again in the future to continue to help the artery grow.  We talked to Kinsley's cardiologist's nurse coordinator yesterday (the doctor was the attending on the cardiac floor yesterday and was swamped).  She read some of the report from the test to me, but obviously we will follow up with the doctor in April at her appointment.  It sounds like 90% of her blood flow goes to the right lung, 10% to the left.  We do not know what it was % wise before the ballooning, but it couldn't have been good!  The report did not give %s for ventilation, but did say there was slightly less airflow to the left lung versus the right.  Kyle & my guess is that we will be doing this again in the future....when? we do not know.  The doctor did not seem to want to even think about doing another cath on her again for at least 6-12 months, but we will see.  

We follow up with cardiology at the end of April & Kinsley will have an EKG & echo at that appointment.  That will help clarify that everything is functioning well, given that she now has a murmur.  

Hope that helps feel caught up!! 

We love yall and truly appreciate every one of you.

Until Next Time...
Love, Jen

No comments: