Thursday, March 13, 2014

Kinsley Anne's Big Day!

Yesterday, as most of you already know, Kinsley Anne had a heart cath. Maybe we were naive, but we thought it was going to be a 2 hour procedure... It was 8. But, with that being said, we are so blessed.  All day, Kyle & I felt so peaceful. Seriously, we didn't stress out at all.  Obviously, this mama shed some tears when they took her from us at 9am this morning, but that is to be expected. The preop nurse was amazing & did not allow for her to get anything done before some oral Versed took effect ~30 minutes before the procedure. No vitals, no IV, no name band, no hospital gown. I could have kissed her.  That helped Kinsley Anne so much.  Before Versed, she would whimper when anyone would come to talk to us. After Versed, when the nursing assistant came to do vitals, she greeted her with a loud "heyyyyy" and all of the staff burst out laughing.  Here's a little video of Kinsley Anne "drunk" on Versed....


I got myself together fairly quickly & Kyle and I went on a little walk to find breakfast and chill out for a little while. The waiting room we were told to use was for CVICU & was HUGE.  We were lucky to find 2 recliners next to each other & set up camp for the day. We were able to catch up on our work emails & rest comfortably.  We received hourly updates from the awesome OR nurses which is what I'm sure every parent looks forward during the duration of their child's procedure.

Now, for what they found during the cath....

1) They found out that Kinsley Anne was born without an Inferior Vena Cava (IVC).  This is a large vein that carries unoxygenated blood from the lower half of your body to the bottom of the heart.  This sounds alarming, but despite being extra rare, it actually carries no risk to her.  Her body has compensated by using other veins that insert into the Superior Vena Cava (SVC).  The SVC is a similar vein the IVC but carries blood from the upper part of the body.  

The only time this would ever matter is in the cath lab. They typically access the heart via the IVC and in her case, had to go through a vein in her neck.

2) They were able to get into her pulmonary artery & take some fascinating pictures.  The pictures were able to beautifully compare the left & right pulmonary arteries.  It does not take a doctor, though, to be able visualize that there is DEFINITELY a difference in hers.  Once they got into the left pulmonary artery, they took measurements (3.8mm) and decided that they would try ballooning.  They blew up a 4mm, then 6mm, then 8mm balloon.  The doctor said that with the first balloon inflation, they actually slightly tore the very innermost lining of the left pulmonary artery (which is a good thing!!). As Kyle put it, just like when you are working out, muscle tears a little before it grows.  So, KA's doctor explained that now with this tear (that will heal) & increased blood flow, the hope is that the pulmonary artery will continue to grow.  She tolerated all of this beautifully & the best news is that her pulmonary artery stayed open after the balloons were deflated, so no stent was needed!!!


The big black vessel in the top 2 pictures is her RIGHT pulmonary artery (normal).  The little vessel to the right of that is her LEFT pulmonary artery.  The left is before balloon, the right is after. Obviously still not normal, but a significant improvement.

The bottom 2 pictures is just the left pulmonary artery (abnormal side). Before on the left, After on the right.


3) She does have some collateral circulation built up as a result of the small left pulmonary artery.  That is actually a good thing as it helps her compensate.

4) All of her other vasculature appears to be OK! 

5) As far as her recovery goes, she has done pretty well.  She obviously is not happy that we're still in the hospital. She has to have a test done today called a Ventilation/Perfusion Scan (V/Q Scan) which makes sure that the amount of air going in & out of her lungs is compatible to the amount of blood going to each lung.  If there is a discrepancy, it just means that we may have to go in at some unknown time in the future to try getting her left pulmonary artery bigger again.  She was having pain last night from where her arterial catheter had been in her right leg.  She wanted to sit up but couldn't because it hurt.  So, the nurse finally was able to get an order for & give her some narcotic pain medicine & out she went.  It was glorious to see her finally rest easy.  We slept decent last night.  We slept ~2 hours after the pain medicine then woke up for her nurse assessment & vitals. At that point, she decided she was hungry for Pringles & thirsty for ice & water.  Then, we slept about 3 more hours until the next nurse assessment & vitals.  Again, she decided she wanted some Cheetos, fruit snacks, and water.  We then slept for ~3.5 more hours.  Pretty good for a hospital stay!!!  She is sore this morning, but says she does not want to take any medicine (it is evidently pretty nasty tasting from her reaction to it last night).  She has been such a little trooper through all of this.  After all, she is a 3 year old who hates people messing with her & this is just not her (or anyone's) idea of fun.  She has become accustomed to her arm hugs (blood pressure), finger light (oxygen sensor), and her temperature being taken. She doesn't like it but now lets them check her pulses in her feet when they need to.  We're just praying that her IV still works well enough to use for this V/Q Scan today because placing a new IV for one test is just not ideal.


her poor little eyes and face were so swollen yesterday. It took until ~3am to resolve.


Kinsley Anne definitely takes after daddy with anesthesia recovery. As soon as she was awake she wanted to drink. She drank 4 apple juices & ate a popsicle all in recovery. 



Kinsley trying to get some rest when we finally got to her room upstairs. Please notice that her hospital gown is covered in giraffes. 

Kyle put it really well when he said how much Kinsley Anne has helped us grow our faith. Amazing how little ones can do that, huh?  Everyone has wanted to know how we stay so calm & strong.  The answer is that we prayed coming into this, prayed over her yesterday morning in pre-op, and then put it in God's very capable hands.  We were absolutely blown away by the number of people praying for our sweet girl.  Kyle & I talked about that all throughout the day & it provided unbelievable peace.  Thank you from the bottom of our hearts for every prayer, FB message/comment, text message, & phone call. We have been surrounded by incredible love & support and could never thank yall enough.


Until Next Time...
Love, Jen

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