Tuesday, July 31, 2012

Day Nine...

WE'RE GOING HOME!!!!!!!!!!!!

Miraculously, really, Gavin slept through the night keeping his oxygen saturation above 92.  So we are packing up and going home.  Thank you to everyone who prayed, supported, sent positive thoughts and love his way.  It mattered.

We're on our way, Brian!!

Monday, July 30, 2012

And On The Eighth Day...

1:30pm:  Gavin did well overnight.  The Respiratory Therapist woke him at 2:30am for another treatment with the percussion vest.  I'm always so proud of Gavin with how he handles things.  He smiled sweetly for the whole ten minutes.  It did take a while for him to get back to sleep, but when he did he slept until morning.  He had another treatment when he got up.

Dr. O'Reilly, Gavin's ENT surgeon, came by to check his left ear for me.  They looked fine to him.  He told me that the ear drops can sometimes sting - and that's likely what it was.  He said it was fine to stop the drops altogether.  

Gavin's doctor came by and had him taken off the Vapotherm and put on regular oxygen.  He has been holding his oxygen saturations steady since which is the best news.  A couple hours later, he came back with his team and a game plan that has me trying not to get my hopes up.  He said that if Gavin can take a good nap today without oxygen - and his numbers stay above 92%, he could go home as early as tonight.  If not - they will watch him overnight.  Basically, he has to hold his numbers up while sleeping.  That's when numbers typically drop.  So the good news is, we could come home tonight.  The bad news is, we could come home in 159 days.  It's all up to Gavin at this point.

Armed with that exciting plan, I jumped into action.  I had the Healing Touch therapist come back and give him another treatment.  She left me some Lavender on a cotton ball and I placed it near his bed.  I fed him a comforting, warm lunch...and then he got a bath in a real bathtub.

  I put him in bed and made the room as dark as possible - and put a huge sign on the door that said STAY OUT!  Just kidding - it said "Sleeping!  Please Shhhhhh!"  Sounds silly, but there are no boundaries in a hospital so I need some kind of stop sign so people don't just barge in.

Gavin is currently laying in his bed trying to fall asleep.  Every so often someone gets paged right above his head "Lisa, you have a call at the desk!"  "Mike, can you come to the front please"  Seriously - it makes me nuts.  Why must it be right over the patient's heads??  But anyway, he is slowly falling asleep and his numbers are looking good.  I'm holding my breath...hoping he won't hold his.

Stay tuned!!

4:15:  For the last two hours I have been sitting in a darkened room watching and waiting to see if Gavin would fall asleep.  There were times he looked so close.  But then he'd suddenly flash a big smile into the ceiling tiles and start waving his arms.  I can't let him just lay here any longer - it's not fair.
I just spoke with the doctor to plead my case - I really want us to go home.  Unfortunately, he really wants Gavin to stay.  So, with tears on my cheeks - it's time to push back the curtains and let in some light in this room.


Sunday, July 29, 2012

Day Seven: Would You Like A Shake With That?...

I can't believe we've been in this hospital for seven days.  Unbelievable!  Gavin is doing pretty well - but we're not *there* yet.

Gavin woke up happy and hungry and ate a great breakfast.  He had a whole cup of Kefir which made me happy since that's what I use at home to keep him "regular".  Plus, the probiotics are helpful while he's taking the antibiotic for his Pneumonia.  He also had a cup of milk and some pureed food.

After breakfast, Miss Sara came to visit and stayed late into the afternoon with us.

Gavin was SO happy to see her.  And so was I!  We laughed and talked and laughed and talked...pretty much what we do every day at home.  She also did a great job of eliciting smiles from Gavin.  Take a look...

Gavin was in a playful mood for much of the morning.  Sara and I were both so happy to see him smiling.  He's a boy with an easy smile, so when it goes missing for a while you'll do anything to get it back.  This morning he was making US smile!  Here he is playing "Peek a Boo"...

The doctor came in and we chatted about Gavin's current condition, his progress and his plan.  I asked if we could remove his IV and switch to all oral meds.  She said yes.  (Boy, was Gavin happy to have his hand back!!)  I asked if we could eliminate some medications - the Lasix and the Zantac, which they had him on while he was on BiPAP and not eating or drinking.  She said yes.  I asked if he could go home soon.  She said that it depended on Gavin, but she was concerned about his Oxygenation.  Gavin has started getting very congested - likely from the Vapotherm which adds lots of humidity and causes his nose to run.  It could also be from laying around - everything just sits.  The doctor said she wanted Gavin to try a percussion vest that would help break up the mucous in his lungs and help him move it up and out.  This might also allow them to be more agressive with weaning him off the Vapotherm.

I also contacted the ENT surgeon about Gavin's left ear.  I noticed that when I put the drops in that ear he winces and cries out.  I just feel that something is up.  A couple doctors looked in with their otoscopes, but it may require a different type of instrument.  Gavin's ear canals are unusually shaped and it's hard to see in very far.

The afternoon was a little rougher for Gavin.  He started having pretty bad diarrhea.  The kind that required me to change not only his diaper, but his gown and his linens as well.  Poor kid!  I think getting back to eating food after a week of nothing was a shock to his system.  It was a long day for both of us.

After dinner and making a fun video to send to Brian, I tried to keep Gavin awake.  Respiratory therapy was coming with the shaky vest thingamajig.  Unfortunately, it was 9:30 when they came.  And when I found out that the doctor wanted this done every six hours I regretted terribly keeping him awake.
But, in Gavin style, he was sweet and patient - and didn't put up a fight at all when the vest was put on.

When I told him he would hop like we did on the frog ride on the boardwalk, he gave me a weak smile. And then she turned it on and it took him by surprise...

It stayed on him for ten minutes and I really thought he was going to fall asleep.  Afterward she used gentle suction in his nose and got out SO MUCH!  It wasn't long after that that he finally fell fast asleep.  

Please send every positive thought and prayer you can spare.  I really need to get Gavin well...and get him home.  I need us all back together again.

Saturday, July 28, 2012

We're Turning A Corner!...

8am:  I saw a smile.

Stay tuned...

(Come on.  You can't tell me that wasn't worth of it's own post.)


9am:  I think we've turned a corner.  Gavin's last dose of Toradol for pain was at 1:30 this morning.  He could have gotten it when he woke up, but when he gave me that weak smile I told them to hold off.  So far, so good!

Gavin's laying sideways in bed watching Little Einsteins with his arm around his new favorite stuffed Beagle.  A gift from his friend, Addie!

The doctors just did their rounds and were all in agreement that Gavin can leave the intensive care unit TODAY!  At some point we will be moved to another floor.  As soon as the private corner room with a view is ready for everyone's favorite patient, I'm sure.  They are going to start weaning him off the Vapotherm slowly over the next couple days until he's able to keep his oxygen up on his own.  And today we will really encourage him to eat and drink.

Ed is coming out this morning with Brian.  Now that Gavin is in better spirits and less "frightening" looking, I think it would be good for them to see each other. Then I'll take Brian home and spend the day with him before coming back to the hospital for the night.

Please cross everything that everything goes according to plan!!  Today has the potential to be a great day.

10:20am:  Brian arrived!!

Brian was VERY happy to see Gavin and had lots of questions.  What's that for?  What's this thing?  What's in his nose?  He didn't seem scared at all.

 Gavin didn't have any smiles after this morning, but I really think the presence of Brian lifted his spirits.  So much so that he started DRINKING!!!  Just little sips, but it's a start!

Ed lifted Brian up to look out Gavin's window.  Something even I hadn't done until today.  The hospital is under construction for a huge remodel so it was a big treat for Brian to see all the trucks and construction workers!

Brian and I are on our way home while Ed and Gavin move to his new room.  We're going to the same floor where Gavin spent months as a baby - 3E.  I know we'll see lots of familiar faces!!  I'll write more when I get back tonight after I get Gavin's progress report from Ed.

I enjoyed every millisecond of my time with Brian.  From the elevator button pushing on the way down...to the stop in the gift shop on the way out for the biggest, bluest lollipop Brian's ever seen...to the chat on the drive home...to our afternoon of coloring, cars, stickers and giggling.

Kinda like this...

I asked Brian on the way home what he would like to do with Gavin when he comes home.  He said "Ummm....Gavin to laugh."  I asked if he wanted to make Gavin laugh and he replied, "Maybe giggle."

My Mom met me at my house with lots and lots of comfort food to bring back to the hospital and leave at the house for Ed.  (Homemade potato soup - divine!)  Near the end of my time at home, Brian had a bit of a meltdown.  He buried himself in my neck and just sobbed and sobbed - near hyperventilation.  I think, even though he was happy and we had fun all afternoon, it was his way of "letting it all out" and I didn't try to stop him.  We went up to my bedroom and sat in the rocker for a while.  I asked him if it's been hard for him to miss Mommy and Gavin.  He said yes.  I told him it's okay to be sad.  That I was sad, too, and missed being home with him.  I asked him if he wanted to plan a party for when Gavin and I got home.  We planned to make cupcakes and get balloons and he said that it had to be Mommy and Gavin and Daddy and Miss Sara and Brian.

When I got back to the hospital, Ed reported that Gavin had a bit of a tough time with pain.  That was the only bad news, though!  He ate yogurt, drank Pediasure, Kefir and was smiling away.  I couldn't believe it!!

But then - Gavin proved it to me.

I fixed him a big dinner and was shocked at how much he ate.  This is all good news.  

The only hiccups came from his IV and his Oxygenation.  When the respiratory therapist attempted to turn down the setting on his Vapotherm, he "de-satted", requiring her to turn it back up.  And then later, when the nurse was getting ready to give him his IV meds, she wasn't sure she was comfortable with the IV site.  She called in the nurse manager and the two of them had to break down the IV (which pretty much means remove the thousands of layers of tape so they can see the actual needle.  which also means torture Gavin.) to get a better look at it.  After some manipulation (which meant crying, yelling, sweating and near gagging from Gavin) and flushing they thought it must have been a blood clot and kept the IV.  Thank God.

Gavin could get his medications orally, but that can be a crap shoot.  Getting his Lasix and his antibiotic through IV is a sure thing.  As long as the IV works - I'd prefer he get his meds that way.  But if they have to pull it - I do NOT want him to get another one.

There's really no predicting when Gavin will go home.  Once they wean him down on the Vapotherm, they'll want to switch him to regular Oxygen.  And then he'll have to keep his oxygen sats up before they discharge him.  It's hard to predict.

He's had a restless night tonight.  Hopefully he'll wake up tomorrow with that smile again.

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.

Thursday, July 26, 2012

A Mother Always Knows...

I had just pressed "Publish" on my last post when it started.

Gavin's kicking and thrashing turned into crying out and violent jerking movements.  I rushed to his side to try to calm him and tried to think of anything that I could do.  It just continued to get worse.  I knew in my heart that something was wrong.

I pressed the call button and asked for them to send in our nurse.  We had just met her tonight.  After a few minutes and no nurse, I pressed the call button again and asked if they could send in a doctor.  Anyone.  I really needed help!

Suddenly the nurse arrived.  I showed her Gavin's behavior - told her it was completely abnormal - explained that I knew something was wrong.  She assured me that his vitals looked fine on the monitor - that he was due for his Toradol (the new pain med they switched him to) and we should give it to him and see if it helps.

I told her, "How about you give it to him while a doctor looks at him.  Just in case."

She pushed back for a little bit.  Not in a rude way - just a practical, "his vitals are normal, maybe he's mad" explain it away kind of way.  

I finally (and strongly) told her that something was very wrong with Gavin.  I needed a doctor to see him  now.  He had been here since Monday and he's NEVER acted like this the entire time.

Next thing I knew, there were two doctors in the room.  It was quickly discovered that Gavin's two hour old IV was painfully infiltrated.  I wanted to cry.

So I did.

By the time the Toradol kicked in a little, they pulled off the tape and removed the IV - he calmed down a little bit.  But then we had to contend with getting in another freaking IV.  The doctor ordered oral Morphine for him - knowing what I knew all along.  Gavin was in pain.  And if he had to endure another IV stick, I wanted the Morphine in his system beforehand.

Luckily, the IV Team was successful on the first stick.  They used the inside of Gavin's wrist which was rough - but it worked.  We secured it with cement and steel at my request.

It took a while for Gavin to let go of me and fall asleep.  I can't blame him.  It has been a really traumatic night for both of us.  I'm just glad that I can be here with Gavin - and that there's always one of us with him at all times during hospitalizations like this.  

The moral of this story?  Always trust your instincts when it comes to your child.  A Mother always knows.

Day Four...

Let's start day four's post with a happy memory, shall we?
The night before Gavin's surgery, I took the boys swimming in our "indoor pool" as a very special treat.  Gavin was SO happy - which was the exact emotion I was going for.  What I wouldn't give to see that happy face again.

8:00am:  Last night, around 11pm,  I wrote on Facebook that Gavin was sleeping soundly and I thought that both of us were going to sleep through the night for the first time.

Well, I was partially correct.

From 2-3:30am, both of us were awake.  I don't know how to describe it...but it seemed like Gavin had "restless body syndrome" - kind of like restless legs, but everywhere.  The nurse and I didn't know what to make of it...and we changed his position to see if that would help.  I tried massaging his legs and arms...laying with him...putting on his Little Einstein movie to see if he would focus on that...I pulled out all my tricks.  To be clear - these were not jerky "seizure like" movements if you were concerned.  They were intermittent and it seemed more to us like he was agitated and uncomfortable.  The resident gave him a very small dose (very small) of Ativan to relax him...and he was able to go back to sleep.  And so did I.

I woke at six and checked on Gavin and he was hot.  Unfortunately, he has another fever - 101.5 - which may prompt a repeat X-Ray today.

The ENT group came around bright and early to check on him.  From their perspective, he's still looking great.  The biggest concern is the respiratory issues and the Pneumonia.

I'll update again once the doctors make their rounds this morning and I find out the game plan for the day.

Please continue to keep Gavin in your thoughts and prayers.  
He needs as much positive energy as he can get.

1:50pm:  A lot has happened since this morning that kept me from a sooner update.  Gavin did indeed get another chest 
X-Ray and it came back showing no improvement.  It wasn't worse...but it definitely wasn't better.  Despite that finding, the doctors decided that clinically he might be ready for a trial off the BiPAP.  They wanted him to go on Vapotherm via a nasal canula for an hour.  Vapotherm is essentially a high flow, high concentration of Oxygen that is vaporized with warm air.  They suggested we get him back in his chair on the Vapotherm and let him attempt to take small sips of his Pediasure.  

Before we made the move out of bed, Gavin had a very special visitor!!  Ed stayed home this morning so Miss Sara could come to the hospital to see us.  Gavin was SO happy to see her...

...and I know the feeling was mutual.

Soon, the nurse and I got him all ready - disconnected temporarily from some of his wires and IV - and I picked him up and put him in his chair.  He and Miss Sara watched movies and talked for a little while before she had to get back  to tag team with Ed.

Shortly after she left, the respiratory therapist came in to hook Gavin up to the Vapotherm.  I love that it gave me a chance to see his face and wipe it up with a warm cloth to make him feel a little better.  I also swabbed his mouth with one of those sponge on a stick thingamajigs.  He LOVED that.  

 I then brought out his sippy cup with the Pediasure and his very shaky hand slowly reached up to touch it.  He was thirsty, it seemed.  As soon as the straw touched his lips he started to drink.  And drink.  The doctor told me to only give him small sips.  That was a joke - Gavin held that straw between his teeth and kept drinking.  I nearly called the fire department to ask them to bring the jaws of life!  He probably ended up drinking 3oz and I took it away.  He was starting to gag and I didn't want to overload him too soon.

Because Gavin's on Lasix, his urine output is high for about an hour after he gets it in his IV.  I ended up having to take him out of his chair to change him with the nurse's help. Before I put him back in his chair, I requested some holding time.  We sat on the bed and he was so weak - he had a hard time holding his head up.  

But then I gently guided his head onto my chest and there we stayed for a while.  I was so happy to have him in my arms.  

Once we got him back and settled, I got word that I had another visitor!  Our friend, Elayne, came back on her lunch hour to visit.  And about three minutes later, I got word that another visitor was at the door.

It was GRANNY!  

Gavin ended up staying on the Vapotherm for almost TWO hours.  By the last half hour, you could tell he was exhausted.  He was also breathing rapidly so I called the respiratory therapist to help me hook him back up to the BiPAP.  I tilted him back in his chair and he's now sleeping soundly.

Slow and steady wins the race.  But I do believe we're in for a pretty long race.

9:00pm:  Not long after I wrote the last update, Ed arrived.  Gavin woke from a sound sleep to acknowledge his presence with his eyes and then passed out again.  I did something very rare while Ed was here...I took a short nap.  

I ran out to pick up something for dinner and when I got back to the room, Gavin was back on the Vapotherm.  They decided to let him stay on it until he declined - or when he was ready to go to bed.  Whichever came first.  He slept up until Ed had to leave.  Which, coincidentally, was the time that we discovered he needed yet another new IV.  The IV in his ankle had infiltrated.  

Gavin needing an IV is always awful news.  He has the tiniest, most difficult veins.  Many of them were already blown from previous sticks.  When the nurse told me he needed a new one tonight, I told her to not take offense - but she wasn't doing it.  And that she'd thank me for that.  Gavin is such a difficult stick - I always ask for the IV team immediately.

After two tries...screams and tears...near vomiting and sweating...she finally got the IV in his arm.  It took a long time of looking with special UV lights and tourniquets and other opinions - Gavin was a mess during the wait.  He was a wreck during the sticks.  And he was traumatized and hysterical for quite a while after everyone left and it was just us.  It broke my heart as it always does.

He's back on the BiPAP and sleeping in bed.  I think both of us are a bit tense and anxious tonight.  I felt lucky when Jill from the "Healing Touch" department came by to ask if she could work on Gavin.  She just finished and said she tried to calm his energy.  He has been twitching and kicking and thrashing - just like last night.  

As an added bonus, she said she'd come back and do Healing Touch on me.  The timing is perfect.  I'm feeling a tad bit frustrated and helpless tonight and I don't want those feelings to come across in front of Gavin.  After all, he's the one that is truly suffering here.  I'm just the witness.

This will be my last update tonight.  Please pray that tomorrow is a better day for our little superhero.  He really needs a break.

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.

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