Friday, July 27, 2012

Forward and Backward - Day Five...

10:15am:  If you read the post I wrote last night, then you won't be surprised to learn that Gavin is pretty miserable this morning.  He's been awake and crying, whimpering and restless since 7am.  I laid with him in the bed and he wouldn't let me leave.  He nuzzled his head into me and gripped my hand as he cried.  I couldn't help crying with him.  Ed just arrived to take over of the bedside comfort session so I could have a break.  Gavin has had it, I think.  He is just so, so sad.

My heart breaks for him.  

We took a few steps forward and a big step back this morning.  Gavin had another X-Ray first thing today and it came back looking worse.  Not the news we expected.  We're hoping that doesn't add on too many days to his stay.

However, Gavin is handling the Vapotherm very well.  He's keeping his Oxygen Sats up, which is great.  They made the bold move to stop his IV fluids and attempt all oral feeding.  We need the IV port for his antibiotic and Lasix, but we don't want to overload it and risk losing it.  The doctors also discontinued all pain medications except Tylenol or Motrin by mouth as needed for fevers or discomfort.

The plan today is to keep him on Vapotherm all day as long as he tolerates it.  They are leaving his soft collar on.  I'll try to encourage him to eat and drink.  And Ed and I will bust our behinds to try to get a smile out of him.  It's possible we will be kicked out of the intensive care unit and onto another floor tomorrow or Sunday, but we will definitely be here all weekend and possibly into next week.  
We shall see.

1:10pm:  Gavin has spiraled down.

As I wrote this morning, he was miserable when he woke up and didn't receive any type of pain medication before he fell asleep.  He slept until 11:30 - and woke up moaning and whimpering.  Suddenly our room became very popular.  Three doctors came in to examine him and all were in agreement that Gavin was in pain.  But why?  He shouldn't be having pain from his adenoid or tube surgery anymore.  His arm is fine from the IV infiltration yesterday.  The pneumonia may make him feel poor, but not cause pain.  They are equally confused and concerned.  They asked the ENT doctor to come down to check his ears... and they ordered a film of his belly.

In the meantime, they put him back on IV pain medication.  He just fell back to sleep in his chair next to me at 1pm.  

That plan to eat and drink and possibly head out of ICU tomorrow is no longer a possibility.

Something is wrong.

The mystery continues.  

Thanks for all of your suggestions of possible pain sources.  I brought up constipation and five day post op adenoidectomy pain to the doctors and they agreed that indeed it could be a possibility.  

I also wracked my brain for other ideas.  He's been wearing that soft collar since Monday and it seemed to me he was favoring looking towards the right.  Maybe he has a stiff neck, I thought.  So they took the collar off.  The good news is that his breathing was fine without the collar so he doesn't need it anymore.  And I guess also good news is that he immediately turned his head to the left - blowing my theory that he had a stiff neck and could only turn to the right.  (Is anyone else reminded of THIS EPISODE of the Brady Bunch?  I know - inappropriate during this time.  I can't help it - I'm a Brady Buff.)

I also asked if the eye surgeon could come back down to check Gavin's eye.  If, perhaps, his cornea tore again - that would be very painful.  They did a thorough check and his cornea is intact, thank God.

The belly film showed some gas and stool - but nothing outrageous.  They gave him a suppository and we're waiting for him to have a bowel movement.

In the meantime, I tried offering him a drink here and there and he was just not interested.  He's been crying, grinding his teeth constantly, sad and whimpery when he's not sleeping.

The ENT surgeons came down and checked his ears - just in case something was going on there.  They pulled out some dried blood - but everything else looked fine.  Just to play it safe, they ordered ear drops with a mild steroid for the next couple days.

The last thing they tried was testing for viral cultures.  They swabbed his nose and sent it to the lab - but it could be a while before we learn if anything grew.

So, here we are.  The good news is - he was successful on the Vapotherm via nasal canula all day (albiet a rather high setting).  He will go back on BiPAP through the night.

I'm getting a little bit stir crazy.  I have tons of down time when Gavin is sleeping - I sit in front of my computer and obsess over news stories and Facebook updates.  If I can't leave the room - at least I can get out of my head and distract myself from the reality of this.  I get so bored at times that I refresh my email and facebook a hundred times a minute - anything yet?  How about now?  Maybe now?  But then that is tempered by the hours I spend laying in bed with a whimpering Gavin as he clings to me and I sing songs to him over and over and over.  When I stop to think about Brian at home, I worry about him missing me.  But when I weigh the two sides - I'm where I'm supposed to be.

I'm pretty sure Brian is doing okay, though.  Today Sara set up the "Leong Olympics."  Here are the photos for your enjoyment.  I know they cheered ME up!

The Opening Ceremonies...

Excited for the games to begin!

"Game face" ready for the Javelin... 



"He shoots!  He scores!!"

Participating in "the mile."  Four laps around "the square"...

I don't know.  I could be wrong - but I'm pretty sure Brian is fine.

There are four things you should notice about this photo.

One:  Gavin is still awake at 10:20pm.

Two:  The room to the right of him has the lights on full blast and probably will all night due to what that patient is dealing with.  The room to the left of him has a very loud family who is dealing with a lot, too.

Three: Gavin is still on Vapotherm.  He will go back on the BiPAP when he's closer to sleep. 

Four:  Gavin is not crying, pouting or wincing thanks to medication to relieve his mystery pain.

It has been a long night.  Gavin is just miserable, but seems to be calming down as you can see in the photo.  The suppository he was given did work and it didn't seem to bother him when it did, thank God.  From past experience, it could have been a traumatic experience due to his already low tone and the pain medication.  

Hopefully tomorrow will bring answers - a miraculous recovery - or both.


  1. I'm so sad for you all right now. Praying for rest and food and healing and renewed strength for everyone but most of all Gavin. I hope that all the news from here on out is only good and that you get to come home soon. Lord cover him with your mercy and grant them the peace that surpasses understanding.

  2. I am so sorry that Gavin is struggling. I am sure you both are exhausted. I am praying for better news today and some rest. I love the picture of Ed with Gavin. When I look at it I feel like it captured a tender moment of gentle love from a father to his child. God Bless

  3. So sorry that this step that was to provide some relief & healing has caused these problems & trauma! Sending healing thoughts, hope & strength to you all. You'll be on the other side of this at some point! We're very sick and low in spirits here, so hoping for some uplifting for all of us, especially Gavin.

  4. Hoping you have some answers soon...

  5. My heart breaks for Gavin and what he and you all are going through. I pray that the Lord will strengthen you and sustain you. And I pray for healing for your sweet boy.

  6. Praying for an answer...

  7. Praying for all of you. Feel better soon Gavin!

  8. Reading every update hoping for good news. I'm sending positive, healing thoughts eastward. Breaks my heart that this little guy has to endure so much during this hospital stay. Kate, you are such a loving and dedicated mother. May you get some much needed sleep.

  9. Just throwing a thought out there...when my mom was in the hospital last summer and had to be on the bipap....she hated it and became very easily annoyed with it. It would give her a headache because of the force of the air going in.

  10. Breaks my heart too. One simple surgery...never going to be simple for Superhero...and then there's home having a GREAT time with his torch and his flag...definitely made me smile.

  11. Keep the updates coming. I'm hanging on every word and praying for the moment when you are all on your way home. Sending all of my positive thoughts your way!

  12. So glad you have Sara & wonderful to see photos of Brian having fun. Keeping you all in my thoughts & prayers. & hoping things are better soon.

  13. More prayers coming your way :) hope you find an answer soon and Gavin gets better

  14. Sarah- you made me think of something my cousin was in the hospial 3 years ago was put on bipap and became conspatied, irritated and violent

  15. {{{{{HUGS}}}} to you and all the other families in the PICU tonight!


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