Wednesday, July 25, 2012

Adventures From the PICU - Day Three...

Here we go again!  Another streaming day of updates.  Hopefully it will be a day of positive news and forward progress.

8:15am:  At least I can start out with a funny story.  Well, it's kind of funny.  Okay, it could have been really bad - but I'm trying to focus on the funny to hide my guilt and embarrassment.  

Gavin was rather agitated and uncomfortable last night and it took a long time for him to settle down.  I got into my pajamas and crawled into bed with him around 11pm and he fell asleep holding my hand and resting his leg on top of mine.  

Around 1am I thought that he was in a deep enough sleep that I could slip out of bed and actually get into the pull out "chair/bed" in the room.  I zonked out immediately.  People may not believe this part, but I felt a hand on my shoulder and it woke me up.  No one was there.  As my eyes came into focus, I saw Gavin trying to crawl out of bed!!  And by crawl out of bed I mean to say he made it almost to the floor by sliding out backwards on his belly.

Naturally, I freaked!!  I jumped up and gingerly picked him up trying to protect the IV in his ankle...the BiPAP that had slid onto his cheek and was setting off alarms...and the leads from his heart monitor.  I got him back in bed just seconds before the respiratory therapist walked in to find out why he was alarming.

Naturally I said, "Gosh - he must have pulled off his mask!"  Gulp.

It figures that the moment I lay down to sleep something like this would happen.  There was no way...NO WAY!...I was going to admit that this happened on my "watch."  *wink*  The good news is that he was fine - the IV was fine - the mask was re-attached - and I saw a glimpse of the 'old Gavin' who I'm hoping is starting to get his Mojo back.

9:00am:  The doctors did their rounds and discussed Gavin's situation and treatment goals.  He woke up with another fever and tachypnea, unfortunately.  The doctor ordered a chest X-ray to be sure he doesn't have fluid in his lungs.  If he does, they will start him on Lasix to dry him up.

The plan today is to remove the soft collar around his neck and see how that goes.  If it goes well, then later today they will try to dial down his BiPAP settings to see if he can handle less breathing support.

The Respiratory Therapist completed morning "torture time" with his deep suction torture device.  It's as difficult to describe as it is to watch how Gavin handles this.  Just imagine if you were a child - your Mom and a stranger pin you down to the bed.  Then another stranger comes at you with a long, long tube and starts sticking it down your nose deeper and deeper and deeper until you gag.  You look up and see your Mom's face and try to beg her with your eyes to make it stop.  He does stop - but only to help you breathe for a little bit.  Then he moves onto the other nose.  And then down your throat.  By then you are kicking and trying to break free...sweating and shaking.  You keep looking into your Mom's face and feel so confused - why is she smiling and singing at a time like this??  So you put your hand up to her face and start clawing at her mouth.  Over and over as if to punish her and beg her for help at the same time.  If you can imagine that, then you've just put yourself in Gavin's position.

As heartbreaking as it is for me to be there and hold him down - it is nothing compared to what he is going through.  I've felt this way since he was a baby.  I will ALWAYS be there so he can see me.  I want him to focus on my singing and see in my eyes that I will never leave him to go through something alone. After each suction treatment, he is left shaking and clinging tightly to my hands.  I lay down next to him and sing until he calms down.  This morning he required some Morphine when it was all over and now he is sleeping comfortably.

What this little boy endures.

11:30am:  Bad news.  Gavin's chest XRay came back showing Pneumonia.  They increased the settings on his BiPAP and will give him Lasix and an antibiotic through his IV for the next several days.  I insisted that we get him out of bed more - laying on his back just can't be good.  They're going to work with me to get him into his KidKart wheelchair, which is uber-comfy as soon as he wakes up.  (Insisted is probably the wrong word - no one had an issue with it)

On a lighter note, we got two gift bags delivered to our room from a gift shop volunteer!  One bag was for Gavin - a soft little stuffed beagle and a really cool book that has things Gavin can spin (his favorite thing to do!).  And one bag was for Brian - a fun Elmo book that I know he'll LOVE!  Both were from Addie, a very kind reader of this blog.  I really do have the nicest readers - thank you for everyone's love, prayers and support.

A volunteer also delivered a child size knitted blanket for Gavin to use in the hospital and then bring home.  These little gestures bring tears to my eyes - it's starting to sink in that we have a much longer road than we thought.


1:30:  We got Gavin up into his chair and very comfortable.  He's very happy that Ed is here and I've decided to leave the two of them together this aternoon.

Since we're going to be here - probably through the weekend - I need to go home and spend some time with Brian.  I don't have a long window as Ed put his car in for service today, but it's something!  I can also take a shower, too.  I'm sure the doctors and nurses will be grateful for that.

Ed's in charge so I'm hoping he takes diligent notes so he can fill me in when I get back.

To: Gavin  -  Love, Brian!

My whirlwind trip home was worth it in every way.  I was thrilled to see Brian...and thrilled that he was happy to see me, too.

Brian's doing great.  His daily routine has not been disrupted and he is having action packed days with Miss Sara - who, as I've said before and will say forever, has been going above and beyond to help our family through this.  

While I was gone, Gavin had to get a new IV.  Ed said it took three tries, which is such a bummer for Gavin.  But not a surprise - he's a tough stick.  His ENT surgeon, Dr. O'Reilly, came by to see him and said he thought he looked better than yesterday from his point of view.  

Gavin really loved being out of bed in his chair.  Even flashing a couple small smiles.  One was for Brian when I showed him the video message.  But this evening when I got back and he was settled back in bed, he started whimpering and staring at me with wide eyes.  He got his dose of Morphine and is now sleeping soundly.  Hopefully we'll have an uneventful night.  I won't be updating again tonight.

Thank you for all of your positive and kind thoughts and comments.


  1. Still praying! But glad to hear he's starting to act a bit like himself. You might try having somebody else hold him down in your place so you can rub his head or arm. This might be more comforting to him than just singing to him while holding him down. Another thing is a lot of facilities have a backboard type of thing that may help. I *think* it's called a papoose board. But, it would help restrain him and might be a little bit comforting because it is supposed to help them feel secure. Not sure how much these will help, but hopefully the suctioning won't go on too much longer!

  2. Checking in regularly to see updates... it *is* good that he's seeming more like himself -- even the attempted escape!!! I remember the 2 days we spent in the PICU with J in 2008 -- SCARY, but so glad that kind of care was available to us. You guys are in my thoughts!!!

  3. Hang in there Mommy. I have the same approach with my girls. I know they don't understand what is happening to them or why I let strangers hold them down and do horrible, although medically necessary, things to them. But I'm there with them and they always forgive me. Although they can't speak or understand much of my language - I know in their hurts they love and trust me. They know I'm always there for them. I understand the heartbreak you feel. I'm so sorry Gavin has to go through all of this. Stay strong and try to take care of yourself as well. Let others help you so that you can do more for Gavin.

  4. Just a note to let you know so many are praying, your family is on our minds, in our thoughts and prayers, and we are wishing Gavin a very speedy recovery!

    From a Mom who has spent months on end in a PICU, with 2 of her babies, I'm thinking of you, I know how hard it is on a Mommy to see her baby hurting,and to endure so very much, and to be away from home and your other baby, (((hugs)))

    Your faithful follower,

  5. Sending more prayers your way. Being in an upright postion may help him. It was so kind of Addie to send Brain a gift too. I have a blaknet from my NICU days I am sure when Gavin is older he will appreticate who gave to him durning a hard time. Get better buddy!

  6. Sending you Prayers and Positive thoughts! You are a ROCK STAR Gavin! Feel better soon! :)

  7. Jacki, your PS Mama friend.July 25, 2012 at 8:17 PM

    Sending love and prayer to you and Gavin. Xoxoxo, Mama!!

  8. I was wondering why they haven't tried giving his dose of morphine before the suction ordeal or even a partial dose to take the edge off such an obviously frightening(at least to Gavin) and uncomfortable procedure.We were able to do this some years ago at John Hopkins Hospital and it seemed like they were quicker and got the job done well with less traumatizing of our son.Don't know if the situation would allow this for your little one,but I thought it might help to share.Keep up the awesome job supermom!

    1. Hi, Anonymous!
      Don't worry...I am militant about Gavin getting his pain meds. Sometimes he'd get Tylenol and Nubian before...and then I'd ask for morphine after to deal with the after affects. I've told Respiratory they'd have to come back several times! LOL! But even with sedation, it's still very traumatic.


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