Monday, July 12, 2010

Day Four: Reasons to be Encouraged

Making himself at home in the step-down unit.

This morning we celebrated a simple chest xray that came back clearer than yesterday.

But then the day went a bit south.

McKay was not at all happy.

To make matters worse, every time he sees someone walk by the door to our room, he gets upset.

And if they walk in?

Forget about it. It's tears before they even touch him.

I hate seeing him so jumpy and distrustful.

By mid-afternoon the whimpering was more than he or I could take and the nurse agreed a late afternoon spent in the fog of some decent drugs was worth considering. Even more so because lots of people would be in and out because...WE WERE BEING MOVED OUT OF THE CICU!

Hooray! We're now in the cardiac step down unit and McKay must know it because he's been a different kiddo since we arrived.

A break from the pain of healing seemed to be just what he needed. His first item of business was to take a nap on his belly--incision, chest tube and all. It made me very nervous, but the nurse assured me he was fine. And he looked so peaceful, I had to believe her.

Next, we played Thomas. And despite all of the tubes and wires still attached to Mac's distended little belly (it's full of gas), he decided to sit up and drive his trains properly.

Of course, Dad was right by his side to support his every wobble and offer a little choo, choo, choo action.

More than one nurse has said "These Fontan kids seem to pick a day and turn the corner."

McKay is still draining quite a bit of fluid from his chest (550+ mL/day) so I'm not quite ready to say we've turned the corner, but this afternoon he definitely took about a 2-hour peek around it. We'll take it. And while we continue to play a guessing game with his pain level and the meds to give or not give him, we'll hope he gets better at telling us what he needs and continues to take just a few more steps each day. This kid is AMAZING.


Jenny Lincoln said...

He looks wonderful! I completely understand that it would make you nervous to have him on his belly. I would feel the same way. How could that be comfortable? He looks pretty peaceful though. :) Praying for this drainage to slow down soon and for McKay to just keep feeling better.

Sabrina said...

Mindi!!!!! he is doing FANTASTIC!!! it's funny, b/c I'm noticing, and Luna's card confirmed; different hospitals do and even say things differently. for example, Luna drained like crazy, but it was such a non-issue; like it was just par for the course. so, don't let the drain tubes get you down at all. In fact, those came out very last-and it did come down to us just waiting for those to empty before we could be discharged.

He looks great and is stepped down...which are major steps in the right direction!!

we're still rooting for Mac:)

ps-has he been able to take a few steps yet? even five steps, completely supported, will help move that gas out of him. It did the trick for Luna.

we're praying for all of you...hooray...not much longer and this too will be behind you:)



Jenny said...

His eyes look so good today! He looks like the happy Mac he usually is. That poor belly though! He has every right to be grumpy! Two year olds are that way anyway and he has a little more on his plate! THANKS for keeping us all posted. Yay for the little steps forward today:).

Kristi said...

Well it makes ME happy to see the kiddo playing with his little trains. Yea!!!

brees said...

Yahoo! Small victories are huge in the grand scheme of things. We are praying that he continues to do so well. I have to say I love his distended belly, quite cute!

Stefenie said...

McKay is looking great! I really felt for the poor guy when you mentioned how upset he'd get whenever people would enter his room. Logan was that way following his second surgery. If the docs even congregated outside his room he would get sent into a meltdown. Makes your heart hurt for them.

I am glad that he is feeling a bit better in the step down unit. Saying lots of prayers for him to finally turn that corner and steam ahead!

Tawn said...

AWWW! I'm praying for you all Mindi! You are seriously in my thoughts always! Little Mckay has been through so much just with this surgery itself, and the little guy is just such a trooper! So stinkin adorable he is, everytime you post a new picture of him, I just wanna squeeze his adorable little cheeks! Keep smiling little guy!

Christina said...

Glad to see a better day and out of the ICU is a big step. Keep up the good work McKay!

Hugs & Prayers,