Saturday, April 27, 2013

Day 5 - End of day

Today was a day that had a bunch of really good moments.  Moments that were answers to prayers and some fun moments that weren't even expected.

As you saw from an earlier post, breakfast was eaten by the boy at The Stollery, in unit 4C2, Room: Chomper, Bed 2.

If that doesn't deserve a hallelujah, I'm not sure what does!!  I was so thankful in those moments where one scoop of Corn Flakes turned into two, and then three.....all the way till six!!!  And if that wasn't enough, a few minutes later,  feeling like I was on a roll (okay, I knew I had nothing to do with it!)  I asked if he wanted one of the Timbits we had been taunting him with all day yesterday.  Well, I don't know if taunting is the right word.  But what would you call it, if you took you child for walks around the hospital several times, and in the stroller's little snack holder in front of them, you place Fuzzy Peaches, Timbits, Pringles and Gummy Bears?!?   Sure, we got a few looks from people as we walked by, most were probably aghast that these parents would feed their sick child all this junk in a hospital. Anyway, you get the idea! So after a day of no interest in any of that I offered him a Timbit, and guess what!  He ate half of one!

Well, I guess those morsels were enough to fill him right up, as he didn't eat lunch.  But later in the afternoon, when he saw some Hickory Sticks (his dad's favorite) in a vending machine, we got some and he snacked on a few.

Okay, that's a lot of details about food. But I'm just so glad that there is some desire to eat, under his own parameters.  For now that's fine.

Other activities of the day were a bit of a surprise to us.  The Alberta chapter of the Children's Wish Foundation had an event for the kids at The Stollery.  Here are a couple of pictures from that event.  Even though this accounted for less than 15 minutes of our day, we took a lot of pictures, because it was likely the most unexpected and appreciated display of love for the kids who have to do hard things.

It started with a lightsaber.  Well at least for the boys.  And if you know my Nate, you'll know that if you offer him a lightsaber, you have a friend for life!  From there, the kids had a choice of two Build-a Bear dogs, and their choice of an outfit for their dog.  When Nate saw the army outfit he knew what to pick.  The name he picked is General Grievous, lol!

From there, we met Spider Man (Tinkerbell and Cinderalla were available too). We went on to decorate a 'wish box' and that's when Nate decided he was about done.  We did frost one cupcake before we left.  There were many other activities going on.  They had nail art for the girls, a dress up photo booth, facepainting and massages for the parents.  I was just so impressed by the love they showed for the kids, and how special they made our little heros feel.  What a fantastic organization honoring the little fighters we love so much!

Okay - minor interruption.  I just spent about an hour with the rest of this update...there was some really good stuff in there!!  But in transferring from my ipad to macbook.....POOF!  It's all gone.  Sad?  Yes!
But knowing I'll be getting up in 4 hours, I really can't finish it now.  So here is the summary:

Introducing back ibuprofen and a PRN for morphine for 24hrs.  Want to give Nate the best chance to have no pain to give him the ability to heal, get mobile, and effectively cough and clear his lungs.  His O2 sats were still dropping during the night yesterday into the 80's, so got him back on oxygen for the night.  Expecting it to be better tonight.

INR (blood clotting) levels are not increasing yet.  I gave him my first finger poke to check levels, and later this evening gave him my first injection of a blood thinner drug that is done twice per day, until his levels regulate and we can continue on the oral medication only.  He still cried and pleaded just the same, but after calming down, grabbed my finger and held on as we sat together for a quiet snuggle.
He still loves me.
He will have his regular blood work done tomorrow.  Please pray!

Meds:  Had a tough day of his continued resistance and spitting out the medicine.  Found a trick online, that worked better at the 9pm doses.  A freezie to get the mouth super cold, and then placing a finger between his cheek and teeth, and dispensing the medicine in the area at the back.

Activity:  He is walking a little farther, with someone helping to stabilize him.  He tires out quickly, but today was an improvement from yesterday.

We had a wonderful surprise visitor today.  We met a beautiful 'heart family' when we were in Edmonton in January for the MRI, and was so glad to be able to reconnect today!  We missed you M!

Nate is beginning to emerge from the post-surgery darkness, and as he does, I can see that his little mind is confused at times with what happened, and why things are continuing to happen to him.  And the life long changes that will now be a part of his world are something that I pray he will accept as he grows up with it.  I wish we were leaving the hospital with a "fixed it and forget about it" scenario, but we're not.  It makes me think that the transition to back home will have it's challenges, as it's not just going back home as it was before.  It's a new lifestyle and changes in routine and some kinda uncomfortable things that will need to be adjusted to, and eventually be a part of the everyday.

Okay, I'm still really bummed about my lost words....seriously!  But time to put that aside, and get some sleep!  Thanks for being pumped about Nate's walking video!  I've got one more little audio clip that I want to share.  You'll have to turn your volume way up on your computer for it to work.  Something kinda cool and unique about Nate's new mechanical valve, is that you can actually hear it working!  These is a fainy 'tick tick' sound every times it opens and closes.  I just used the iphone 'memo' recording function to get this, so there are some ambient hospital sounds in the background.  But thought you might enjoy!

1 comment:

Anonymous said...

We loved hearing your heart beating!!
Owen, Avery and Rylan