Recovery- Day 2

Today wasn’t a terrible day, but it wasn’t a great day either.  We were hoping things would be smooth sailing and we might be moved out of the PICU today, but Little E wasn’t quite ready.

Here’s a wrap-up of our day:

-The morning started at 6am when Evin was not so happy about getting a chest x-ray.  Her lungs were a little more cloudy and gunky today than they were yesterday.

-She was pretty puffy first thing this morning and has remained rather swollen most of the day.  Sometimes the diuretics can take about 24 hours to really kick in, so her swelling has decreased as the day has gone on.

Here's Evin this morning.  Most of the swelling was on her right side since she prefers to lay on that side.  We had flipped her over at this point to try to break up some of that fluid.

-Her belly is extremely distended.  We are unsure if it is full of air, or if there is poop that needs to come out.  The pain medication she has been on can make you constipated, so it has been a tricky balance of keeping her comfortable with meds and trying to keep her from being constipated.  She seemed content enough this afternoon that we decided to move forward this evening with just Tylenol to control her pain.  It seems to be enough for her right now, and we are praying it continues that way.

-They pulled out the pacing wires, the left atrial line, the art line, the foley catheter, and the IV in her neck today.  She looks better, and hopefully feels better, without so many tubes and wires! 

-We had to leave the chest tube in because she has excreted quite a bit of fluid today.  A surgeon during cardiac rounds this morning said that with Double Outlet Right Ventricle repairs, it is expected for them to develop pleural effusions, or excess fluid around the lungs.  He did not act at all surprised of Evin’s chest tube output.  It has slowed some as the day has progressed, and we pray it continues.  Once the chest tube comes out, we should be able to hold her whenever we want.

Today is my birthday, so my sweet hubby had 2 cards ready- 1 from him and 1 from Evin.  We got Evin to "sign" her card today with her footprint!  

-Eating did not go well today.  We offered her small amounts about 4 different times.  She took about an ounce each time, but then would act like her belly hurt, and the last time she threw it up.  We have discontinued feeds for the time being, and hope to start them back up once we get her belly situation under control.  Sometimes it just takes a few days for their belly and bowels to wake back up from surgery.

-Evin had a central line on one side of her neck and an IV on the other.  Since she is so swollen, the sites where the lines were are basically in the folds of her neck.  One of them started oozing a little bit and has gotten rather irritated and red, but not infected.  A wound care specialist came to look at it and gave us a spray and a cream to apply as needed.  She said to expect it to look pretty yucky for a few days, but should start getting better on day 3 or 4.

Cook Children's has all sorts of people who volunteer for different jobs in the hospital.  They have a lady that paints canvases using footprints and handprints, and she came by today.  Here is Evin with her masterpiece.

-The highlight of my day, and the best birthday present I could have asked for, was getting to hold Evin for about 45 minutes.  I held her upright on my shoulder and patted her back in order to try to get her to burp or get some of the air out of her belly.  She must have been pretty comfy, because she fell asleep after about 5 minutes in this position, and then slept soundly the rest of the time I held her.  I was a happy Momma!

-Evin was much more alert and aware today.  For the most part, she has been pretty content, but she did get worked up a few times while being messed with.  I don’t blame her a bit, and have jokingly told her several times out of guilt that as soon as we leave here we can go straight to the toy store and she can pick out whatever she wants.  At one point today she woke up, reached for me to pick her up, and cried because I didn’t/couldn’t.  Talk about breaking my heart!!!

-This evening she has coughed quite a bit and ended up throwing up mucus several times.  It’s terrible to see her struggle while throwing up, but it really is good for her to get that mucus out of her chest.

-Evin had her first big wet diaper tonight!  She actually had 2 wet diapers in a 2 hour period, so we were pretty excited.  Hopefully this is the start to getting rid of some of that fluid.  Also this evening she got a glycerin suppository to treat her constipation.  Praying for poop tonight!

You can see how swollen she is here.  Her poor belly is SO big and I know it hurts.

A better shot of her puffed out little belly.  Poor baby.

It was a pretty big day for our little girl.  She is rather worn out, so we hope she will get some good rest tonight and continue to get rid of the excess fluid.  Every once in awhile when she is resting she will pop her eyes open to make sure that Mitch or I are there with her, and then she will go right back to sleep.  I have a feeling that we will be switching off sitting with her tonight to make sure that one of us is awake to comfort her throughout the night.  Pray that we are able to get some rest, too!

Thank you for joining us on this journey with Evin.  I know so many people are keeping up with her story and it truly amazes us.  When Evin is older I can’t wait to tell her just how many people have prayed for her.  What a special little sweetheart she is, and what a blessed family we are!