Thursday, May 3, 2012

Cayla, feisty little thing...

Our dear, sweet, little, innocent, unassuming, precious Cayla Joy is getting a reputation in both the NICU and PICU...  She's repeatedly being called a "feisty little thing".  :o)  She absolutely detests the tubes, wires and anything within reach of her sweet little hands.  She will grab, yank, pull, push, throw, or squeeze anything she possibly can much to the chagrin of nurses and doctors.  Now that she's in the PICU, they have these "cute" little soft cuffs they put around each wrist with ties attached that are clipped down.  My child is in handcuffs and she's 9 days old.  What does this say for our future? ;o)  I say she gets it from Lowell for sure, even though I'm going to be the one having to deal with this "feisty little thing" during each day.  :o}  I can't tell you how much I'm looking forward to that... No, it's all good.  I think her feistiness will serve her well through multiple surgeries she'll have throughout life.  Not only is she being "handcuffed", she is also having to be heavily sedated.  It's so sad to me to see her lying there so out of it.  I am glad she's not fighting and able to rest since that is what's really needed at the moment.

As I walked in this morning, there were 15 doctors standing outside of her room, discussing her.  I took a picture of them, but can't post it until I get back to my room tonight.  I'll just add some pictures in here later, so you can check back.  The bottom line... she had what they keep calling an "episode" early this morning.  Her heart beat went up to the 220's because she got so agitated, and they could not settle her down fast enough before she blew all her numbers off the chart.  She pretty much blew all chances of surgery for today.  So Friday morning it is for surgery.  She will go back for prep at 8am and surgery will start promptly at 8:30am.  When I went in her room, her heart beat was hovering in the 190's and stayed there for most of the morning.  They decided to take her off all diuretics and allow the fluids to help bring the number down.  It worked.  Within 30 minutes she was down to the 150's.  Yay!  :o)

Dr. Stewart came in to talk.  He got paper and drew pictures of all three heart surgeries she will have in the next 2 years.  This one tomorrow is not as serious as it could be.  He did say that the pulmonary artery that needs banding is only 6mm long which doesn't give him much room to work with.  He told us what plan B and plan C are in case he can't band it.  I'm not going into it all right now, but hopefully plan A will work.  He answered questions and read me my last rights :o) and had me sign Cayla's life over to him which I was happy to do.  Dad and Pat were there and got to meet him and were so impressed with him.  You can't help but be impressed with him.  I told him there were many, many people praying for him and the whole team tomorrow.  He got a big smile and said thank you to all who will pray for him.  :o)  He did say that even though there will be students, residents, fellows and all looking in, he will be the only one to operate on Cayla other than closing her up.  I have to say I'm glad. So, here we go.  :o)  God is in control.  Oh, he also said her lungs were almost completely clear and the mucus had pretty much diminished to nothing!  So all the paths to surgery seem clear and ready to go in the morning Lord willing!

The anesthesiologist came in and explained all he will have to do tomorrow to keep every part of her sedated separately so they can adjust as needed to different areas of her body.  I almost think he's just as important as Dr. Stewart in all this.  We have a lot of confidence in everyone we've met.  Love that.

Lowell, Samuel and my mother-in-law came up this afternoon.  Lowell took off at noon from work just in case she had surgery today.  I couldn't help it, but seeing him triggered something in me and I just started crying as he held me.  Haven't seen him since Sunday and let me tell you that was a long, long time ago.  They got to hold Cayla's hand and feel her squeeze their fingers even through her sedation.  It was pretty emotional for all of us.  Lowell started talking to her and she turned her face toward him and his voice.  So sweet!  She does look completely different than she did last week.  Her eyes are somewhat sunk in and have dark circles under them.  Her hair is still all plastered down from the EEG and they can't bathe her since it would cause too much trauma to her system. Oh well, that day will come.  :o)  We all love this precious little girl so much.  We thank you for your prayers tomorrow and over the next couple of weeks! 

I need to go now, but will try to update as I can.  I was able to get a half hour power nap in her room this morning which was really nice!  Off to see our precious Cayla Joy!  :o)

Surgery possibly Thursday now

Well, here I sit at 11:30pm trying to focus and stay awake another half hour to pump.  So, let's see what I write tonight...

Dr. Stewart came by at 3pm today to say that if he finishes his other surgeries tomorrow early enough, he wants to take Cayla in tomorrow afternoon to do her surgery.  He was getting concerned with the blood flow to her lungs which supersedes the fluid in the lungs and the mucus in the throat.  He said he was having her moved immediately up to the PICU to be prepped for surgery and be ready in case he can do it.  Here's some pictures of her now in the PICU.

No guarantee it will be tomorrow, still could happen Friday morning.  Would love for it to be tomorrow.  The PICU put her on a morphine drip to keep her agitation down.  Didn't work and they had to give her something a little stronger to knock her out and then let the morphine maintain it.  So hard to walk in tonight and see her so lifeless.  If you notice in the above picture, they have restraints on her hands.  She really needs them but it just looks wrong, like she's a prisoner or something.  She's been on morphine all week, but she fights against and still pulls at anything and everything she can get her little hands on. So, seeing her finally not doing that or doing anything is good but sad.  Oh, can 't wait for surgery and we can move on.  This waiting is for the birds.  :o{   Anyways, I'm tired and not focusing well.

The doctors in the NICU this morning spent quite a bit of time trying to figure out how to balance out Cayla's meds.  Cardiology wants to see more output (urine) from her so they want to increase her liquids.  Neonatology wants to get the extra liquid out of her lungs, so they put her on a diuretic to remove fluids.  These two "wants" are slightly conflicting...  They also want her to increase her calcium.  One of the other things she's taking, depletes calcium...  They had a bunch of things like this to work out.  They apparently did and feel like they are making the best decisions for Cayla. 

Kim and Dave Hunsicker came by to visit today too!  Had fun laughing with Kim over stories we had to tell... :o)

Dad and Pat arrived tonight and we got to go back over to see Cayla. 

Pat took all these photos on her Galaxy tablet.  Here's one more she got of me and our precious Cayla Joy.

Extremely tired, but hopeful she can have her surgery tomorrow.  Thanks for the prayers.  I mean it, really.  Thanks to all who've prayed!   Until tomorrow!  :o)