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.

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.

Lost Connection!...

We lost our internet tonight! We won't get it back until Tuesday or Wednesday which, in our house, is a crisis. I had a special blog planned, but that will have to wait. 

 Ed and I had a wonderful, relaxing weekend. And, as planned, I got lots and lots of much needed rest. Tomorrow morning Ed and I will be taking Gavin to the hospital for an early morning surgery. My plan is to start a journal entry and then continue to update it throughout the day with his progress. You won't get multiple notifications when I post unless you're friends with me on Facebook (which you are welcome to do!) so keep checking back! 

 Based on past events, they have reserved a room in the pediatric intensive care unit where the two of us will stay overnight. But on the other hand ~ Gavin may shock everyone and sail out of that hospital tomorrow! Thanks for rooting for him, as usual.

Oh, And Then This Happened...

This is what Gavin wants to do all the time.  And trust me - he can walk even faster when there's something very motivating at the end.

Life is good.  And with all the bad news in the world, there's nothing like a Leong group hug (watch to the end of the video!) to make it all better.

Ed and I are taking a few days off to be together and to let my body sleep and be still.  Miss Sarah (the original Sarah!) is spending time with the boys while we're gone.

Have a wonderful weekend!

Beep! Beep!

Big day in the Leong house.  I've got big news.  Are you sitting down?

Today I let Miss Sara drive Brian.  In her car.  Twice.

I told you it was big.  I've always had a thing about other people driving my children.  Any other people - including the Pope and Mother Theresa.  I've always figured - if something would ever (God forbid) happen to one of my children while they're on the road - I'd rather it be on our watch.  But I can't be everywhere...and lately I've been taking Gavin an hour away to the hospital.  Each time I'd take him - Brian would miss school because of my fears.  So today - I squelched them.  And it worked out great.

I basically said this to Sara:  You know all the things you see ME do when I'm driving with you and the kids in the car?  Don't do ANY of THAT.

Brian thought the whole experience was awesome.  He told Miss Sara her car was "fancy" and he ran up to her with his arms stretched wide when she picked him up from school.  As I requested - she sent me a text with a photo of the two of them alive when they got back to the house.  (Do I need to remind you of my warped sense of humor?)

I love this girl.

The whole process will be repeated this Monday.  Sara will be 100% in charge of Brian while Ed and I take Gavin to the hospital for his surgery.  He's having his adenoids removed, tubes placed in his ears and, while still sedated, they will check his hearing.

We're still winding down Gavin's home therapy services!!  There's only a handful of days left -and his surgery cuts even more time away from our goodbyes.  Today Miss Janna was here and Gavin surprised us with a long overdue encore of color matching!  Here's a cute video showing the two times he successfully matched colors - and sweet Miss Janna blowing bubbles in celebration.

As you can see, Gavin kinda likes bubbles.

Miss Maggie was here right after Janna and we went over some Speech refreshers.  The most important one for me to absorb is a technique called OWL.  It stands for "Observe" "Wait" "Listen".  The best example I can give you is this.

"Gavin, are you gonna talk to me?  Tell me a story.  I want to hear you.  Sing to me, Gavin!  Come on, I know you can do it...."

Basically, continuing to talk non stop and not allowing the most important thing.  Silence.  Gavin needs processing time before he does anything.  If I stop and just listen - he starts vocalizing.  One might say that I could apply this to conversations with a husband who might live in this house - but let's just focus on Gavin, okay?

Brian will continue getting speech therapy from Miss Maggie when school resumes this Fall and I'm thrilled about that.  He's made an extraordinary amount of progress since he started with her.  He started school barely talking...and now he's talking non stop and saying things like, "Hold on a minute" and negotiating a different snack and saying "Please" and "Thank you".  Today in speech he worked with another little girl and Maggie had them interview each other.  Janna, who shares an office with Maggie, overheard the other little girl interviewing Brian.  She asked him what his name is...what his favorite color is...and what his favorite thing to eat is.  But Janna told me she overheard the sweetest thing.  When the little girl asked how many brothers he had, he said one.  Then she asked how many sisters he had...and he counted Darcy.

I suppose I have plenty of things to complain about these days - "a lot on my plate," so I've been told.  But it's really hard to remember them.  I'm one grateful Mother.

Something is Brewing...

Today, Gavin amazed us yet again.  This time it was for Miss Stephanie in Occupational Therapy.  While he has taken a spoon and put it in his mouth before - today it was over and over and over.  It looked just like this...

Each time he fed himself, we cheered.  He LOVED that!!  And I loved that each time we cheered and clapped - he'd show off his cute little dimples.  

This morning, Gavin and I headed to DuPont Hospital to meet with one of the Infectious Disease doctors.  It was a very interesting visit and I'm SO glad I made the appointment.  We were there to discuss the possibility of Gavin having "Congenital Lyme Disease" - and also to discuss my diagnosis.  He looked at my lab report and told me that my results were "suspicious" to him.  I won't get into writing all the details just in case I get things wrong here and there (my brain is so screwy lately!).  Basically, he thought I might have a "false positive" - something I didn't know was possible.  He said that patients with Rheumatoid Arthritis often show up for a positive Lyme because of how they do the test.  The Lyme tests are not that great.  But people freak out and go crazy treating the Lyme Disease they think they have...sometimes missing what they really DO have.  He suggested the possibility of Mononucleosis, Epstein Barr or Parvovirus.  (I called my doctor before getting in the car to go home and he ordered more tests immediately - which I got today.)

He also said that if in fact I did have Lyme, it would be a recent exposure.  In his professional opinion, there's no way I had Lyme before.  So the thought that Gavin may have Lyme from birth was thrown out the window.  Getting him tested, he thought, would be for our curiosity only.  I decided that I'd wait until the tests from today come back before I make a decision on that one.  Right now I'm on information overload.

I left his office feeling good - a little confused - and informed.  I do worry about the accurate testing.  If I don't have Lyme...and the new tests all come back negative...then what next?  I would feel relieved if I found out that I didn't have Lyme Disease after all...but I would want some kind of explanation for why I'm feeling as bad as I am!

I have no time for all of these symptoms.  Not when my Superhero is staging his next big miracle!  I'm telling you - and mark my words - something is brewing with our Gavin.

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...