Surgery Day...

Surgery Day - Updated in (almost) real time...

7:45am:  Mommy was attacked and bitten by red ants in the parking lot and brought an ant family into the hospital with me that had attached to my purse.  Of course I did.  

Dear God, please don't let this be a preview of our day. Amen. 

 Gavin slept for some of the ride and is happy as can be...as usual! We are waiting to be called back. I will continuously update this entry throughout the day with his progress, so keep checking back!

**

8:30am:  Gavin was patient, sweet, giggly and flirtatious in the pre-op area while we met with the nurse, the ENT surgeon, the Operating room nurse and then the anesthesiologist.

We opted not to give Gavin Versed, the amnesia sedative, which they often give kids before they take them back to the O.R.  We realized during Gavin's last round of surgeries that the drug is mainly to help kids to separate from their families - often a traumatic moment for them.  Gavin is always happy to get away from us... just kidding.  He really never had any separation anxiety - but he does have issues with sedation.  So adding extra sedatives for no reason doesn't seem smart to us.

The only important question I ask on Gavin's behalf before they wheel him away?  Do you know the words and tune to "Itsy Bitsy Spider" and "Twinkle Twinkle?"  

Gavin was brought back around 9am.  We had a report at 9:15 that he went to sleep very easily under anesthesia.


***
Dr. O'Reilly just came out to talk to us - the surgery part was over at 9:30!  Gavin did very well.  He said he was quiet and cooperative (as expected!) before he was put to sleep.  The doctor said, "He was just looking around - acting like he was there for a haircut!"  He placed the tubes without issue - and when he moved onto the adenoids he remarked that they were HUGE.  He thinks the surgery will help Gavin with breathing, snoring, eating, etc.  But he also cautioned that he has an abnormally shaped pharynx, so we'll have to wait and see if removing the adenoids makes as big of a difference as we hoped.


They started the ABR (hearing test) immediately after the surgery.  We are hoping, praying and thinking positive that it will come back with the same news as before - that he doesn't need hearing aids.  It would be quite a bummer to us if we got different news.

Stay tuned!


***
11:15am:  Just met with the audiologist who completed Gavin's ABR.  Thank GOD - his hearing is still considered normal.  He has the mildest, slightest loss in his left ear, but it's so slight that he does not require hearing aids.  They suggested we always ask for "preferential seating" when he's in school - but he isn't considered "hearing impaired."  I'm so relieved.


They should be calling us back to see him soon.  He's getting set up in recovery.  This is when it could get tough - I'll keep you posted!


***
12:10:  We just got word that Gavin was taken straight to the ICU - skipping the recovery room - needing breathing support.  It doesn't appear that he's in danger - but we haven't seen him yet.  Please keep him in your prayers.  We're getting anxious waiting.


***
12:20:  Gavin is not doing very well at the moment.  I knew when the clock kept ticking...ticking...ticking away with no word about him that something was up.  I was right.  While we sat in the waiting room, they were trying to help our little boy who was struggling to breathe.  After some reported worrisome moments, they finally got him settled on a BiPAP machine and a nasal tube into his airway to help him breathe.

He's sleeping now, thank God, because they said they had some issues trying to get his pain under control.  He was obviously uncomfortable, but they didn't want to give him Morphine or any other sedating pain medication because of his respiratory distress.  He's now on Tylenol and Nubain by IV around the clock.  They put a soft neck collar around his neck to keep his head positioned in such a way that his airway won't close on him or become obstructed in any way.  


I knew to pack a suitcase...who knows how long we will be here.


Ed and I are nervous, as I'm sure you can understand.  We'd appreciate any prayers and positive thoughts sent Gavin's way.


***
2:30pm:  It's been a rough few hours.  Gavin has been in and out of sleep, but very agitated and uncomfortable when he's awake.  At one point, while Ed and I watched him crying and shaking in pain - I begged the doctor to give him something extra.  She agreed to give him a smidge of morphine and that really seemed to take the edge off.  He fell asleep and missed a visit from his Occupational Therapist, Miss Stephanie, who works in the hospital and stopped in to check on him.


The doctor suspects that it will be a few days before Gavin is weaned off all the respiratory aids.  I packed accordingly with an extra bag filled with hope that he surprises everyone with a quicker recovery.


Thank you for all of your encouraging notes, prayers and get well comments.  I'm relaying them all to Gavin.


***
8:20pm:  This will be my last entry for the day.  I'll start a new entry tomorrow.  


Man, it's been a rough afternoon and evening.  Gavin had several bouts of agitation and crying spells.  Each time they decided to suction him.  Suction is tricky since they can't go too deep where his surgery was.  He has a lot of swelling that is very tender and painful.  But he also has a lot of secretions that make it uncomfortable and difficult to breathe.  Suction is also scary.  In order to get the tubes down his nose and throat, they need to remove his BiPAP mask.  When they do, his oxygen saturation plummets.  Tonight it was into the high sixties.  Not good.  So they suction - quick put another mask with a bag attached on him and breathe for him, essentially - and then suction - repeat - until they can put the BiPAP mask back on.

Ed and I are very grateful to Miss Sara.  She spent the night last night so she could get up with Brian this morning.  We were gone by 6:30am!  Then she took him to school...picked him up and gave him a new Angry Bird ball...


fed him lunch...they made a "Get Well Soon" banner for Gavin...


and then they played some backyard golf! 

 She even fed him dinner and put him to bed, all so Ed could stay here with Gavin and me all day.  He went home after dinner and will be back tomorrow.

Tonight I'll continue to stay parked next to Gavin.  Sometimes his mask loses it's seal and air whooshes up into his eye - usually his fragile eye.  If that eye gets dried out at all, his cornea could easily tear.  I have strict instructions from his eye surgeon to make sure that eye stays lubricated and protected.  So I'm "that Mom" when anyone comes in to fiddle with him.  Gavin is uncharacteristically clingy, which I love - but not under these circumstances.  

He has been holding my hand nearly the entire day.  And, if I'm lucky, he won't let go.  

Thank you so much, as always, for loving my little boy and sending well wishes his way.  It has meant a lot to us today.  And always.

What In The World Has Been Going On?...

I  know my journals haven't been normal and typical for me lately.  That pretty much sums up my life right now, to be honest!  Even this very moment - it's only a little past 7pm and I'm struggling to focus and stay awake.  It's been such a bummer.

But so much has been happening around here!!  I don't even know where to start.  I'm going to totally skip over me - we're all sick of hearing about me.  And I'll skip over Ed, too, as his news would probably be that he's sick of hearing about me, too.

Gavin has been changing right before our eyes.  He has become quite the climber!!  He tries to climb up and onto everything.  If he finds something to put a foot (or even just a toe) on, he'll climb.  I think I see rock climbing in his future.

The best news is - he can get himself down.  He very carefully lowers himself until he feels his foot on the ground.  He can also get in and out of his bed on his own, which is huge!!  He knows to turn himself around, get on his belly and lower himself over the edge until his feet are on the floor.  I'm so proud of him for this!

He's also been vocalizing quite a bit - another huge and exciting step.  We'll catch him "singing" or "talking" when he's by himself, which is sweet to hear from another room.  But he also has been making eye contact and almost seeming like he's trying to communicate something to us.  It makes me very excited to think about what this is leading up to!  Here's a short video of him "talking" to Miss Janna in therapy to give you an example of what his beautiful little voice sounds like.  I'll work on getting better ones soon!

Gavin's been communicating in other ways as well.  Lately he's been pitching little fits if he's not getting his way.  I LOVE it!  Just the other morning we were all in our bedroom when Ed went into the bathroom and closed the door.  Poor Gavin sat outside the whole time - hitting his hand on that door and yelling.  It was sad, I admit, but I couldn't help laughing (and taking his picture).

This afternoon, I took Gavin to see the ENT for one final check of his ears and throat before his scheduled surgery this coming Monday.  Everything is a "go" for the adenoidectomy, ear tube placement and his sedated ABR to check his hearing on July 23rd.  Please definitely check in on that day (here or on Facebook) and send some prayers!  

When we were leaving for home, I made a quick stop in the ladies room.  As I was washing my hands, I felt a "tap tap tap" on my leg and heard Gavin "talking".  I turned around and he looked right into my eyes and smiled.  I knew just what he wanted...and I gave it to him.

He wanted to wash his hands, too, and he told me.

Gavin's at home therapy services are coming to an end very soon.  I can't believe it.  I've been in such a fog that I totally spaced the fact that everyone is leaving us!!  The timing of Gavin's surgery was planned so it would be all done and he'd be healed before he started in his new preschool.  But I didn't factor in that he'd miss some of his last days with his current therapists.  I'm planning to have a party when everyone can be here - all together - so we can properly say thank you.  These women mean so much to our family.  They really do.

Gavin is going to miss them a lot...and so will I!

Brian has changed a lot as well!  Since we went to the beach, his speech has improved tremendously.  The things he comes up with - honestly, it leaves us all shaking our heads.  

"Brian, it's time for lunch"

"Mommy, I want to play for a little bit.  I want three minutes.  Set the timer."

"Huh?  Uh...okay."

He keeps us laughing all the time.

 

When we got back from vacation and he went back to school, his teachers couldn't get over how he'd changed.  All of a sudden he came out of his shell, they told me.  He talked to them without prompting...he talked to his peers...he told stories.  I've known it was in there all along - that he was taking everything in this whole time.  I knew it would come out in his own time - and it did.  Now I just hope they don't kick him out of school for making too much progress!  He loves those teachers!!

His school "year" will come to an end the first week of August.  He'll have a three week break before beginning again at the end of the month.  I'm not sure what we have planned for those three weeks, but if Brian has any say it will include LOTS of chalk in the driveway.

This past weekend we had Sara and her parents over for lunch!  It was our first time meeting her Mom and Dad and they were just as lovely as she is.  Really.  Sara's Mom, Bonnie, is a school teacher - which was very apparent by her sweet and easygoing nature around the boys.

 And her father, Ernie, is a pastor.  Gavin really warmed up to him - as you can see! 

It was fun to spend time together.  Sara is part of our family (and always will be!) - and we felt like we knew her parents before they even came to our home!  In meeting them, it was clear to us why Sara is as wonderful as she is.  She's had great examples all her life.

Soon we will be attending the open house for Gavin's new classroom.  Sara is very excited to be going with him every day and I promised her that I'd buy her a new pencil case.  You're never too old for back to school shopping!

I think you're all caught up!  Or let me put it this way - you're as caught up as you're gonna get.  I think I've re-read this seven times (which I never do) and I'm pretty sure a lot of it doesn't make sense.  My brain is so damn foggy!!  And I just can't keep my eyes open anymore.  I'm off to bed...

Catch 22...

I have no news...good news...and bad news.  Which would you like first?

How about we get the bad news over with.  Today, Gavin and I met with the ENT to discuss his X-Ray, his apnea and his other issues.  I hadn't seen the X-Ray yet, but could tell by the doctor's expression when he pulled it up on the computer that it couldn't be good.  He turned the screen towards me and my heart dropped.

I'm not sure if you know what you're looking at...so I'll try my best to describe things to you.  I wish I could draw arrows on this photo - but I couldn't figure that out!  First - look at his mouth area.  All the white areas are bone and teeth.  See the big molars on the bottom?  They're his adult teeth waiting to emerge!  Pretty neat, eh?  Once you eye the molar on the bottom right - look a little further to the right at that black dot with light typing next to it.  That is an enlarged adenoid...which is an issue.  Go back to that molar and look below (and above) it.  We've always known that Gavin has a narrow windpipe - and his low tone causes it to collapse pretty easily, which is why he is so high risk under anesthesia.  But what was so concerning is that there was not a clearly visible path from his windpipe to his nose.  It looks occluded!  It's amazing he can even breathe at all.

The doctor looked in his mouth and told me his tonsils are fine - they shrunk since the last time they were checked - so that's one issue off the table.  He also tried to get a look into his ears with no luck.  Some of the best doctors around have a hard time seeing in his ear canals.  Gavin has some unique peculiarities in his anatomy - his ear canals are shaped in such a way that makes it difficult to see with an otoscope.  So he decided to have one of the audiologist do what's called a Tympanogram.  She places a little rubber tube in each ear and blows a puff of air inside to test eardrum movement.  If the results look like this...

...it's not good news.  This is what Gavin's results looked like in both ears, indicating that he had fluid built up which could lead to more infections.  But what the audiologist said next had me crying all the way home.  She asked if Gavin has been pulling at his ears or cranky or seeming to be uncomfortable.  I said no.  She told me that he's probably "used to feeling this way" - used to hearing like he's under water - which means this has been going on longer than anyone knew.

*gulp*

This crushed me.  There was no way I could have known he had fluid in his ears...or had pain...or any of it - because he never complains!  And he can't tell me!!  It was only three or so months ago that he first started getting sick - fever upon fever - and we discovered his first ear infection.  To think he's been struggling longer just breaks my heart.

Gavin and I went back to meet with the doctor again with the results from the Tympanogram.  He asked me the loaded question:  "What do you want to do?"  It was very difficult to answer.  Gavin's sleep apnea is scary-bad.  And I worry that this sleep apnea could lead to other health issues.  The doctor told me that removing his adenoids and putting tubes in his ears will help.  But then there's that pesky "high risk" under anesthesia that causes everyone (including me) to think more conservatively.  It's a big catch 22.

In the end, we decided to give Gavin four more weeks before we make a decision.  He will stay on Flonase, which might help.  And the doctor said that sometimes Summertime and Mother Nature helps dry things up as well.  On July 13th, we will go back and get repeat Tympanograms.  If the results are the same (or if things get worse before the 13th!) we will go right into surgery.  I want it all taken care of before Gavin starts school in the Fall.

Being Gavin's Mommy is not easy.  There are so many uniquely shaped puzzle pieces...and odd scenarios...and unusual complications.  The worst part is not knowing, really, what he's going through. What he's feeling and thinking.  My greatest wish is for him to talk.  Please God...give him his voice!

So now we'll go onto the GOOD news!!  Tonight - totally independently - Brian spelled a word!

EXIT!

 I'm not sure where it came from -why that word in particular - but who cares!  I thought it was so cool!!

And so did he.  He was very, very proud of himself...as you can see.

And finally.  The NO news.  Which means no news yet - no positive pregnancy test yet.  I swear I see shadows on the tests...but I won't be cautiously optimistic until the line is visible without me having to stand in the closet holding it sideways with my head to the side and my left arm in the air.

Please - like you haven't overanalyzed a pregnancy test in your life.