:: one week post op ::

 

It's hard to believe it's already been one week since Leighton's surgery.  We've been home for two days now and are making some adjustments.  Leighton is doing really well, she's sleeping better, eating better and having fun playing with her toys again.  Life really is just better at home!  We're still working on pain meds. trying to stay on top of her discomfort, but not just give her medicine around the clock.  She is also taking asprin daily to act as a blood thinner and will remain on that, as well as, her lasix prescription.  I can tell she's feeling so much better, but still needs to rest lots and just let her body heal.  Jackobi and Kashton are really glad to have her home as well! Kashton thinks her oxygen machine and tanks are pretty neat (we're having lots of "fun" teaching him to leave them alone).  And Jackobi is still our good little helper making sure she's always being played with and has her toys.  It feels good to be back together :)

:: home we go!!

[[day five]]

 

 

[someone] was all smiles today!!

 

The change in Leighton's mood and demeanor today were evident! She was acting more and more like her typical self as the day went on.  She was awake lots and super playful.  She even flashed that smile at all the Dr's at rounds this morning and the nurses throughout the day (they have been getting glares in previous days :))  She seems to be eating much better also and her O2 is on point.  She's down to 3/4 Liter on her Oxygen so that's really good! (anything above a 1 and you have to stay here :)).  The scale will be the big determining factor in the morning, so let's hope those chubby legs are storing some of that food she's eating!

 

day four ::

 

Our little lucky charm on St. Patrick's Day! I've never been one to celebrate this holiday, but they sure try to take care of everyone here. For the older kids they had little green baby leprechaun footprints and "pots of gold" periodically spread throughout the 3rd floor for a little treasure hunt and made rainbow crafts. It's pretty neat how much they try and create a sense of normalcy for the children who are here. We even had to sneak a little green bow on Leighton so she wouldn't get pinched. 

Leighton had an okay day.  We did get her first smiles so can tell she's starting to feel better, hooray! We missed that slobbery grin.  But she's struggling to eat and loosing weight.  Her admittance weight was 8.4 K and was down to 7.82.  We're working on getting her to eat [and go potty] :: and for the first time we have a written order of how much intake she needs to get.  She has loved to eat in the past (hence the rolly arms :)) so hopefully once she starts to feel better she'll decide to eat better.  We've also had to chase her oxygen saturations a bit.  Since she came out of ICU she's been consistently sat'ing in the high 70's and low 80's, but this afternoon was dipping into the 60's and low 70's.  We've turned her O2 up 3L (liters per minute) and are trying to find her new normal. Hopefully we can figure it out tonight and tomorrow.  She did have an echo and chest xray this morning that both came back good.

Once we figure out her O2, weight gain will be her ticket home! Hopefully in the next few days. :)

day three ::

 

It's amazing to me how resilient Leighton is!  Today, overall, was a good day.  It started out a little rocky, she had to have her labs drawn [not fun], then re-drawn less than an hour later [really not fun].  She's a hard stick when it comes to blood draws, even when they send their best from the IV team.  So we kind of dread them.  Even more than her blood draws - she hates, HATES taking her tylenol orally.  Kind of ironic since it's probably the easiest [and tastiest] med she takes.  She literally chokes it down, we can't believe how b.a.d. she hates it.  Hopefully she gets used to it because it's the only pain med you go home with! After a waking up at 4am for labs, x-rays, vital checks and yucky tylenol - this little chick was quite frankly not a very happy.  We felt so bad for her! Her little eyes would look at every person that came in her room nervous they'd "do something" to her.  Luckily, kids forgive quickly :)

We're happy that her chest x-ray came back good and the drainage had gone down so we were able to remove her chest tubes [[YAY]] :: that's pretty painful, but she has be oh so much more happy since.  She can move more freely and even tried to "play" a little this afternoon.  We were able to hold her and snuggle on her a little.  It felt good to be able to love on her!  We are seeing such a huge improvement in her disposition and behavior, I can tell she's starting to feel lots better. :)

***

 



[day two] ::

:: look who made her way out of the CICU today? This little sweetheart!!  

 

Leighton had a good day today.  She is awake more often and very alert when she is.  Her little hands have gotten curious and she likes to try and pull her oxygen out of her nose just about every chance she gets.  I have a feeling socks on her hands are in the near future :)  She still has two chest tubes in for drainage, which probably make her pretty uncomfortable, but hopefully they can come out tomorrow sometime.  We're so amazed in the changes we've seen in her disposition and recovery over the last day. What a miracle it is for her to be recovering so well; prayers are being answered. 

Leighton's Surgery [night one]

Leighton had a really good night and has had a good morning so far. We're on top of her pain and she was able to have a bottle this morning so that seemed to help.  After surgery she was on some meds for high blood pressure and other various things, we've been able to wean her off most of those and are getting her off of morphine. We're using oxycodone and tylenol to manage her pain now. She received her first dose of asprin this morning and will continue to take that until her next surgery years down the road. Her mood much better and we've got to see her sweet eyes more today. If all continues to go well, this afternoon we will be able to remove the pace wires from her  right atrium (we've been monitoring pressures since surgery) and her central lines.  Keep it up Leighton, you're such an amazing little fighter!

Surgery Update :: [day one]

Leighton has been beyond amazing today. We checked into the hospital at 6am and her surgery started around 7:30am. She had to stop eating by 3am so we were a little nervous she'd be hungry and crabby, but she was a gem. So smiley and happy. Surgery took about 5 hours, so she did well! She was on bypass for 55 minutes and they did have to stop her heart for 13 minutes while Dr. Kaza (her beyond amazing surgeon) over-sewed her pulmonary artery that is now detatched from her heart. She came off bypass well and even came out of surgery breathing on her own (which isn't always the case) we're proud of our strong little girl!

She's in the CICU (cardiac ICU) recovering now and doing pretty well. Her stats are right where they should be. From 1:00-5:00 she was pretty irritable (rightfully so) and it's taken us until now to get on top of her pain. She had a rough time coming out of anesthesia & I think that's where a lot of her discomfort came from. She moaned and cried pretty continually for the entire 4 hours and there was absolutely nothing we could do to help her. It was heartbreaking. Hopefully she continues to rest tonight so she can heal and the stitches in her heart don't become too stressed.

We again are so grateful for all the love and prayers being sent out way. We have been blessed ...

Glenn Shunt :: Leighton's [second] surgery

This is the best picture I could find explaining the surgery Leighton will have tomorrow.  Ignore the green #3 and #4 :: we're just focusing on the green #1 and #2.

 The superior vena cava is removed from the heart and connected end-to-side to the right pulmonary artery, which is in continuity with the left pulmonary artery. The main pulmonary artery will be separated from the heart and oversewn. 

#1. The lower section of the pulmonary artery (this is where her PA band was placed in November) that should carry oxygen-poor blood into the heart is removed.

#2. Oxygen-poor blood coming back from the top half of the body is diverted directly into the lungs instead of flowing back into the heart before going to the lungs

[I'm pretty sure I could rock Anatomy class now :: at least the heart section ... ]


Leighton had a big day of pre-op yesterday.  We were at the hospital for over 10 hours and the hotel pillow never felt so good when we finally got done.  One of the big procedures she had was heart catheterization.  She did so well.  We used this procedure mainly used to check pressure levels and o2 saturation levels & get a better picture of her heart.  She also had a sedated echo.  She did amazing thru the entire procedure.  Her results basically confirmed things we already knew.  Dr. Gray said as great as everything looked -- it was time for the next step (meaning her Glenn).

Afterwards recovering :: all smiles from this girl :: she's the best patient ever!

We check into the hospital at 6AM tomorrow morning ... thank you everyone so much for all the love, support and prayers.  It means so much.  We will try and keep you posted as soon as we know more!