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.

Done.

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.

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... 

Badminton...

Gymnastics...

"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.

***

10:20pm:  

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.

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.

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.


***
7:30pm:
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.

Day Two in the PICU...

Today will be another "real time" update journal entry.  It's easier to update one entry throughout the day than to sit at night and recall the day's events.  So check back periodically if you want to stay up to date.  If you're Facebook friends with me, I'll notify you when I update.  If you're not - the Facebook button on the right will take you to my page and I'll accept all friend requests.

7:15am:  Where do I start.  After a long night, Gavin is now resting in front of his beloved "Little Einsteins" from home - the one thing that is keeping him calm.  Neither of us slept much last night.

Last night was very rough.  Gavin struggled with the BiPAP in several different ways.  At times he would become agitated (probably in pain) and would grab at it or knock it off while trying to move.  This would require the nurse or the respiratory therapist to put the mask back on his face tightly - which caused him to thrash and "rage against the machine," so to speak.  Then there was me - standing over him helping to hold him down and continuously reminding anyone and everyone to "WATCH HIS EYE!" and wincing as their hands and the mask and the strap and the gauze and the tape all got dangerously close to his open, fragile eye.  

Then there were the times that his oxygen sats would decrease even though he was ON the BiPAP.  

This would require the nurse or respiratory therapist to suction him.  A catch 22, for sure, as the suction is necessary but also likely irritates the already swollen airway that we're trying to heal.  They would suction his mouth and throat and down each nostril.  The one nostril has the breathing tube in it - a Nasopharyngeal airway - so they suction through that which is uncomfortable for him, to say the least.  Hearing the moans and weak, high pitched cries of my usually stoic son was too much for me.  But I wasn't going anywhere.  Gavin is so strong - it took three of us to hold him down as they suctioned him...which happened four times overnight.  The unfortunate part about suctioning is seeing how dependent he is on the BiPAP still.  When they would remove the BiPAP, Gavin's sats would drop into the low 80's, requiring them to use an Ambu bag like the one below to help him breathe by pushing air into his airway.

Twice last night he needed breakthrough Morphine which they give him in a very small dose.  And for most of the night I laid in bed next to him as he gripped my hand.  I found if my head was touching his and I softly sang a lot it would help keep him calm.  It would also be easy for me to know if the mask was slipping off as I'd feel the whoosh of air on my face.  Did I mention that the two of us had a long night?  But I do have to say - we're a great team.

I'm waiting for the doctors to come around for morning rounds to find out the "game plan" for the day.  I'll update this entry after they leave.  

Please pray for our son.  He is really struggling.

***

10:00am:  About ten intensive care doctors, residents and nurses congregated outside of Gavin's room moments ago to discuss his status...concerns...and relay their treatment goals.

His situation was described as "tenuous" and they have no clear idea when he will go home.  We could easily be here for days.  The hope is to slowly and successfully peel away one thing at a time in terms of breathing support.  Gavin currently has three things helping him.  The BiPAP, the nasal trumpet (or nasopharyngeal tube) and the soft neck collar which keeps him in a good position to be sure his airway remains open.  The first thing they will try to remove is the nasal trumpet in his nose.  It's a long, soft rubber tube and it's pretty invasive.  It also has the highest infection risk of the three.  So next time he wakes up, they will pull it out.

Yes - I said next time he wakes up.  Gavin is finally sleeping and has been for the last hour.  This is the biggest solid chunk of sound sleep he's had.  I've been guarding the door like a Mama Bear - and silencing every alarm on his machines as soon as they start.  This child NEEDS SLEEP.  Before he passed out, he had another traumatizing visit from the respiratory therapist who deep suctioned him really well.  I think he did the best job of anyone yet - as far as how much he got out and how quick he was doing it.  But still, in the end, Gavin was upset, crying, shaking, moaning and pleading with me with his eyes after it was over.  After some pain medication, he fell asleep with me "pseudo" holding him.  As much as I want, I can't get him out of bed just yet with the BiPAP - it would be too hard to keep on.  So I scooped my hands under his back and his bum and put us cheek to cheek until his breathing was slow and rhythmic and I knew he was asleep.  Anyone walking in the room would have seen me on all fours straddled half on a bed and part on a chair.  It would have provided their laugh for the day; but, alas my audience never showed.

There's always next time.

***

11:ooam:  Ed arrived!!  Yippee!  Gavin tried to locate his voice with his eyes when he heard him in the room - like he was frantic to see his Daddy's happy face.

11:01am:  I ran down the hall to the bathroom.  Frantically.

11:15:  I had arranged for a special visitor to come to the room.  DuPont has a "Healing Touch" program that was started by a nurse named Walle Adams-Gerdts.  I think her services are probably under-utilized as most people don't understand this type of work.  She is very similar to our Dr. Trish!  Shockingly, it is a free service she offers to patients in the hospital!  Ed and I really enjoyed meeting with her and know that Gavin will benefit from her beautiful gift.  

 

She worked on trying to reduce his swelling, his inflammation and his pain.  Gavin was still asleep when she came which was perfect.  His body was open and cooperative to her healing hands.  It was very peaceful in the darkened room - just the four of us.  

Gavin ended up sleeping until close to 1pm - over a three hour nap which his body so desperately needed.  Just as his eyes were opening I rushed to the nurse to request his pain meds.  I wanted to be sure he had them before everyone who was waiting to fiddle with him pounced on our room.  We had a nice visit before all the commotion started - our friend Elayne came by with books and chocolate snacks for Gavin and me!  She works just around the corner.  It was nice to chat with a friend, that's for sure.

Then it was time.  Around 2pm, Gavin needed to be suctioned and to have the nasopharyngeal tube removed.  I was happy Ed was there to help hold him down - Gavin can be very strong when he wants to get away from something or someone.  The tube came out very easily - Gavin barely noticed.  Well, that's not entirely true - but it was the least traumatic thing at that moment.  The suction process was the most traumatic and Gavin was quite upset when it was over.  I decided then that I HAD to hold him.  I couldn't take one more look from him that screamed - PLEASE, MOMMY!  PICK ME UP!

The respiratory therapist helped me tremendously to accomplish this - getting all of Gavin's tubes and wires and IV all organized and ready before I picked him up.  He had been laying on his back this whole time - I just felt his body needed a new position and a great stretch.  It felt so good to have him in my arms...good for both of us.  

Once he calmed himself and settled into a breathing rhythm, he almost fell asleep.  But soon I started seeing desaturations in his oxygen level and I knew it was time to get back into bed.  In the meantime, his wonderful Daddy fixed up his bed with fresh linen and a new pillowcase while the nurse and I put Gavin in new pajamas.

3:00pm:  I am down in the cafeteria eating a late lunch and taking a mental break while Gavin and Ed watch a movie in bed.  Ed will be home in time to have dinner with Brian, some much needed playtime together (for both of them, I'm sure) and bedtime books.  

Brian is doing great and is enjoying the individual attention at home.  I miss him a lot, though, and can't wait to see my boys back together again.