To Landon with Love

I’m back with our little buddy, and I brought some treasures with me.

If you follow us on facebook, you have already seen the photo, of Nolan giving the sock monkey some love and cuddles.

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And here is the monkey delivering some of the love from home to Landon.  Monkey has since been put to work in holding some tubes off of Landon’s chest.  Well done Nolan AND Monkey!

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Some other additions to our space (also cuddled by Nolan):

So they'll know he's a hero.

So they’ll know he’s a hero.

Tough days are better with a familiar hand to hold.

Tough days are better with a familiar hand to hold.

Now for the update:  I actually have one!  When I left I had signed permission for a blood transfusion “just in case”.  Landon’s platelets were dropping and had hit 18 (this happened in the fall as well and he did get a transfusion) and they were getting low enough he almost needed help this time too.  But..they are rising on their own!  Last report was 28.  The normal range starts around 150. (As in 150,000 per microliter).  This feels like a huge win.  I’m not opposed to a transfusion, it just feels great that he rebounded on his own in some way.

The verdict is that his lungs sound a bit better, and the “junk” is much less tan and brown, and more cloudy.  Both of these are signs of improvement.  The chest xray isn’t reflecting it yet…but that’s normal as they lag behind.  We anticipate that tomorrow’s xray might show slight improvement.

His ventilator stats are fairly good.  He’s down to 35% oxygen, with a peep of 8, and a minimum breath support of 20.  They are trying to drop the 20 down to 15, to see if he will pick up more breaths on his own.  If all goes well, they’ll start working on adjusting his peep down too.

To add some perspective, this is my understanding of how these stats compare to NOT needing support:

  • 35% oxygen currently, compared to 21% room air.
  • peep of “8”, compared to you and I walking around with an unassisted “5”.
  • minimum breath support of 20 and he’s not currently breathing over the machine, with a goal of getting him down to no support, and self initiating 20+ breaths per minute on his own

So…progress.  No improvement in his xray, he’s still on vent, but behind the scenes things are getting better.  Well done Landon!

They’ve also helped him pee off more fluids, so he is looking much less puffy.  His beautiful eye lashes have reemerged around those blue eyes.  I could look at this boy all day. So I will.  Good night all!  And thank you as always for the prayers, support, and for loving these boys like your own.

Scoop Scoop!

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Wednesday Update

Let’s start by being thankful I didn’t type an update at 9:30 this morning.  It would have been very negative, and a lot of things were running through my head.  So even if this one seems “down”, just know that we’ve climbed back up quite a bit today.

Landon didn’t have a great morning.  He has continued to fool us.  He was keeping his Ox level up on BiPap, and his respir rates were good.  But his blood gas let us in on a little secret he was keeping…he was losing a battle in regulating his levels.  In fact, his CO2 had spiked up to 89.  They tested again to be sure it wasn’t a fluke.  The word for that is respiratory acidosis, and if you or I felt that way we might be short of breath, or could communicate that we were feeling confused, tired, off, etc.  But another side effect is sleepiness…and Landon just quietly got sleepier.  He earned his way on to a breathing tube, and I got upset this morning.  It wasn’t just the tube, he’s had that before, and I knew when we showed up this time it might be possible again.  And plenty of people in his condition would have higher CO2 on BiPap and also need to move to a ventilator.  So it wasn’t out of the ordinary.

It was discouraging to move backwards on day 3, but it was also scary that he was still in trouble and we didn’t know.  He is a complicated kid, and even in a children’s hospital on monitors, with tests, and a machine counting his every breath, this snuck up on us.  I think it was just a reminder that I’m in over my head in a lot of ways.  Some days I feel a bit like a kid with a bucket trying to empty the ocean.  I’m not equipped.  But I’ll keep scooping.

Despite getting discouraged today, some good things have also happened.  In contrast to his very sleepy self from yesterday, he has been far more alert today.  His eyes are open a lot, and he looks around when I talk to him.  His CO2 is back down to normal.  He has started small amounts of his food via pump.   He has listened to his brother on video, and squeezed my finger.  This picture caught him looking around.  Scoop.

Hello Beautiful!

Hello Beautiful!

Meanwhile, back home, Nolan had a great day.  He had one of his best vision therapy appointments ever!  I have a photo of him touching the star with his right hand, and video of him touching a Frisbee with his left.  Thank you to Darra and Kathy for capturing this!  Scoop.

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Overall, once we switched to the ventilator, Landon started making some good improvements and the day ended up with a very positive feel.  As a family, we have a plan in place for the next week to help get everyone where they need to be.  Everyone is holding up well at home. All things considered, Landon and I are holding up here, and as of 6:15 pm, we’re feeling very optimistic about tomorrow.  Scoop.  Scoop.

Tuesday Update

Hello from the corner! You’ll see what that means later.

Here’s today’s update:

During morning rounds, they decided to put Landon on BiPAP.  He was holding his oxygen levels high enough, but his heart rate was elevated.  In a kid like Landon, they may not always show you physically how hard they are working, so you have to watch for other signs.  Since going on BiPAP his heart rate is back in a more normal range, and he is clearly more comfortable.  They’ve been able to lower his rates throughout the day, so he’s still headed in the right direction, but this is helping force a few deep breaths.

They did an ultrasound on his lungs to better assess the fluids.  They are saying plural effusion, with signs of what is or would be pneumonia (mild), particularly in his right.  I believe the assumption is still that he had an acute event, likely a seizure, which led to aspiration.  We seem to have gotten him in early enough that it wasn’t severe yet.

He’s getting IV fluids, and is a little puffy.  He’s had a lot of hand, arm, leg, and foot massages from mama today.  He has not complained about that, and we make sure to reposition him often.

He is surrounded by handsome photos as you’ll see below.  And we even watched videos of him and his brothers today so he could listen to some familiar sounds.  His favorite seemed to be a video of himself enthusiastically eating green beans.   ?

As for me, I kept up with a little work, got a little fresh air at lunch time, but spent much of my day in the corner you see behind his bed to the right.  Tight quarters.  Thankfully it is good company.  J

I drank more caffeine today than I’ve had in all of 2015.  That’s no exaggeration; I had given up coffee and soda.  Until today.  (Whoops).

Speaking of how I filled my time, I finished one crochet hat, and started and completed a second one!  My motivation was that I was missing crochet night back home.  The crew got together and when you stack up their recent hard work with tonight’s lesson, there are some very exciting things happening!  You ladies are awesome!

And speaking of exciting things…Landon and I ended our evening with a good long cuddle!! Looking forward to our next imaging and to hearing about progress tomorrow.

There's a lot of handsome in and on that crib!

There’s a lot of handsome in and on that crib!

My crochet work from today!

My crochet work from today!

I'm so proud of the crew!  I can't wait to send these to a NICU.

I’m so proud of the crew! I can’t wait to send these to a NICU.

Cuddles!  Don't let the creepy, tired, Landon sniffing, old lady in the background fool you, those are two happy souls.

Cuddles! Don’t let the creepy, tired, Landon sniffing, old lady in the background fool you, those are two happy souls.