Saturday, May 21, 2011

Cleft Lip Scar Revision 2011

I don't know why the title of this post makes me feel like it's a Star Wars type movie title.  Or maybe it reminds me of the most current up to date vacuum cleaner marketing release.  I guess it's the whole adding of the 2011 part?  Whatever...why does my mind stray to random things when I have things to say that you actually want to hear about?

Thursday, Chip and I loaded up at lunch time and went to go pick up Hill from daycare.  We got to his 'school' and Hill was in the rally room hanging out and playing with his friends.  As you know, Chip and I were an emotional bomb at this point so when his Ms. Trista & Ms. Judy bring us a card and gift for Hill...I lost it.  In the middle of the church daycare hallway I just bawled and watched the tears well up in his teachers eyes as she hugged me just as nervous about everything as we were.  We got to the car and opened the card that had a sweet picture of Hill and the most thoughtful words of encouragement.  They had gotten him a touch and feel book about dogs.  Do they know what my little boy loves or what?  I'm sure they get an earful everyday about everything being a 'dog.'  So after another round of tears we hit the road to Memphis!

Earlier that morning a nurse from LeBonheur East called to ask a few pre-op questions.  She said if we got to town early we could come in and meet with the anesthesiologist and get that out of the way so we weren't so rushed the next morning before surgery.  So we did!  Our hotel was literally in the parking lot of LeBonheur East and we met with the anesthesiologist at around 3:30, which was the best idea ever because she lifted the nervous weight and gave us a piece of mind about the ins and outs.  It wasn't Dr. Poorna, but this lady was from her group and we liked her too.  All was well and we got checked into the hotel at like 4:00.  Since we had time to kill we drove downtown to look at the flood waters.
I know this isn't a very good picture of the Mississippi River, but the waters were pretty high.
You could tell how far it had recessed though.
After our trip downtown we went back to Poplar Ave to eat at Houston's Restaurant.  I love their grilled chilcken salad that is tossed in like a peanut vinegarette...yum.  My stomach was in a big ol knot so I didn't want anything heavy.  We got to sit out on the patio which was nice.  Hill got to play and he ate a huge hamburger and a ton of cauliflower...I know right?  Cauliflower?  The kid loves his veggies.  I wanted him to eat heavy since he wouldn't get to eat until after surgery the next day.  Even then I didn't know what to expect on him being able to eat.  So we stuffed him full then headed back to the hotel for an early night.
Side note that was funny and I want to remember.  Right now Hill can't say flower.  He just associates flower with smelling the flower with his nose.  It could be a picture in a book of a flower he will stick the book to his nose and sniff (really he blows out to sniff). So as we are walking down the hallway at the hotel he is crouching down and walking and blowing out his nose.  I could not figure out what his deal was.  Finally it hit me!  The carpet in the hotel hallway had a floral design effect to it and he was trying to sniff all the flowers on the carpet.  He is such a nut!
No more monkey's jumping on the bed!
Hill rubbing his noggin' after jumping on the bed and hitting his head on the headboard.

The next morning, Friday, I think Chip was up at like 4am.  I could hear him stirring in the 20x20 hotel room.  I rolled out of bed at around 5:00.  We didn't need the alarm clock, the wake up call, or the two cell phone alarms to be set after all.  For those of you that know me...I'm an organzier.  So I jump in the shower, put on my make-up, gather all the bags and kid paraphenalia load up the car, go to the front desk to get Chip and I breakfast bags on the go (love Hampton Inn), and sit and watched TVwhile Hill slept through everything.  We wanted to wait until the last minute to wake him up so he didn't get hungry or thirsty.  We were literally across the parking lot from the facility so we got him up at 6:00 am dressed him in the button up shirts that our sweet friend Jennifer let us borrow, because I didn't want to have to pull tshirts over his big noggin after surgery, and were on our way!

This is at 6:15am all ready to climb on the blocks at LeBonheur Lobby.

Pre Surgery Photo

The lobby had all kinds of jungle animals on the wall.  Hill loves the monkeys and kept going ~
Oh Ohh Ahhh Ahhh (in his best monkey impression)

Here is a pictures of his monkey impression at the zoo last Sunday
(which I will blog about later)
 So once we were called back to the surgery area by this guy....
You may recognize him as the Six Flags Amusement Park guy!  I swear the old guy works at LeBonheur or must have been his twin brother!

We put on our hospital gown and ate mama's camera case.
Sweet yellow gown and slipper socks
While we waited for Dr. Shell to arrive we got to play with all the fun toys!

Dada and I played ball toss

Then we met a friend that wanted to play ball toss with us!
Hill is like his Mama.  He focuses all of his nervous energy towards organzing....
Move the crayons from the left tupperware into the right tupperware

then back into the left tupperware
Dr. Shell came in at 7:00 and talked to us about his plan.  He would do a little scar revision under his nose, which I didn't expect, but was ok with.  He would level out the lip as discussed and check on the tightness of the skin between his lip and gum that I showed concern about.  I pulled out three different sippy cups and asked which he should drink out of (I had been so worried about his sippy cup and keeping him hydrated for after surgery) Dr. Shell gave me in order 1-2-3 preferences.  Hill had only mentioned his baba or nana (sippy cup or food) a couple of times pre surgery.  He never threw a fit about it.  Dr. Shell wrote his initials on Hill's right cheek and placed a couple of dots to where he would be doing the incisions.

At 7:10 they took us back to the toy room to pick out a toy to play with after surgery.  I love that LeBonheur does this.  It is so neat and was a surprise to us because downtown had the toy room but we didn't know this facility did too!  We thought the bath tub fishing pole was perfect!  He loves to fish with his Dada and now he could have his own fishing pole!

Going back to surgery this time was a bit different than his first surgery.  His first surgery he was asleep in my arms and I handed him over to the nurse and he never knew he wasn't in my arms.  This time he had his fishing pole and me.  At 7:15 the nurse was ready to take him back so I handed her Hill and the fishing pole and he started crying.  I think he thought she was going to take the fishing pole away.  At least that is what I kept telling myself.  We heard him cry all the way back - which would have been 30 seconds or so, which felt like forever....then no more cries.  He was fine.  It wrenched my heart, but I was being strong. 

I think the only time I cried on surgery day was when I was praying early that morning before I'd even gotten out of bed.  Then that was it.  I switched modes and charged the day full force.  Nerves were there, but they weren't tattered by fear.  I kept busy during his surgery by pacing the lobby.  Our car was right outside the lobby door so I'd go out to the car for things I didn't need like a muffin out of the breakfast on the go bag from the hotel, or some change for a coke that I never went to get. I saw a dove with a bush branch in his mouth.  I know it wasn't an olive branch, but it still brought me a little peace.  As if God was giving me a sign that he was there.  He was in control.  Which I knew but the visual reminder was nice.

The LeBonheur East facility was small.  Almost like our local medical clinic.  The people were nice, but the patients there were of a different capacity than downtown.  The patients downtown if you recall were there for open heart surgeries, liver repairs, very evasive procedures.  The patients here at East were having teeth pulled and crowns put on. 

At 8:08 the Six Flags guy came and got us.  They were wheeling Hill into recovery so we would have to wait a minute until we could go back.  We ran into Dr. Shell.  He said everything went fantastic. Warned us about the swelling.  Took our pharmacy number to call in his pain meds....and then history repeated itself.  I threw my arms around him in the middle of the hallway.  The location was different, the day was different, but the weight lifted, the positive words coming out of his mouth, the unexpected reaction of my arms just opening up and throwing myself on him to hug him and thank him was all the same.  He smiled.  I remember thinking - does he realize what an impact he has on peoples lives?  This 45 minute procedure that was seemingly so simple for his magnificent hands to do was done before most people had even gotten out of bed to start their day.  He positively changed my sons life before most people even ate breakfast that morning. Wow.  Prayers were answered.

We had to wait what seemed like a really really really long time before they called us back into the recovery area.  Six Flags guy came and told us stories about his kids and other kids from the past in recovery.  You could tell he liked what he did, which I think just hanging out and talking to people was his job.  He was old.  He should be retired, but you could tell he was there because he wanted to be.  I was glad he was there...even though I was standing there in a room full of chairs waiting for the door to open and the nurse to come get us.

In the recovery room there was only one child in there.  During our stay there were only two children that were in and out.  Guess Friday is a slow day for the nurses?  It was quiet except the soft snore of this little guy....

9:15 am He had the arm restraints on which were probably part of his piss-tivity (I think I made that word up) as he came out of anesthesia.  The morphine was making his nose itch and he couldn't itch it.  Here was my 16 month old active baby, not my can't roll over yet 3 1/2 month old like last time.  He was ill, he was flailing and trying to rub his face on his arm braces, which he was successful a couple of times.  I'm trying to pin his arms down and hold him in my lap, Chip has no idea what to do and I'm not a good communicator when I don't know what to do myself.  The nurse, Cynthia, was there, but seriously, how do you calm him down?  He was in the in between stage of out of it and consciousness.  I don't ever want him to go back to that place again.  It is not a happy place for anyone involved.  Once we took the braces / restraints off he was still irritable but managable.  He could hold onto his sippy cup (which he never let go of until we got back to Kosciusko) I think the security of that cup made him feel better?  He was able to drunkardly drink his gatorade.  His lip was swollen but numb.  He couldn't feel the lid of the sippy cup rub on his stitches as he carelessly pulled his drink closer to his little mouth.  Dada ran across the parking lot to the hotel to rob the banana basket at the breakfast bar.  Hill gobbled down a banana and was finally consolable. His mommy gets irritable when she's hungry too.  It's bad news bears so I does his Dada. 

9:45 Due to being in the state of limbo and him fighting his way into consciousness Hill's incisions bled.  I asked the nurse if she could clean them up before we left.  She did...which made them bleed even more.  The other nurse came by to let us know not to clean up his face.  The blood needs to clot itself and dry up so it will heal better and prevent bad scars.  Learn something new everyday...right?  So, now I am scared to death to clean his face up thinking it will scar him.  I'm also 'THAT' mom that goes to the nurses station every 2 seconds thinking that after his exorcisim episode earlier had caused a few stitches to bust.  They said they didn't see it busted, it must have been the swelling from the 'epi' (yeah, look it up I don't know what it is either) making it look that way, but the stitches were there....for now.

10:00am we are on our way home....
Still drunk

See, he still is holding onto his sippy cup.  Never let it go until Kosciusko.
We got home around 1:00 and between the hours of 9:30 and 2:00 my son had eaten 3 bananas, french fries, cheese nips, fruit by the foot, and a nutrigrain bar.  We got home and he stumbled around the house with his toys, wanted to swing on the patio swing, we read 7 books, watched cartoons and he would not go to sleep.  He did relax in the chair with me during cartoon time, but never slept.  He didn't need pain meds but I was needing him to slow down before he hurt himself.  So, I gave him some Tylenol with Codine from Dr. Shell hoping to chill him out.  Good gracious...we did it all over again, played with toys, read 7 more books, pulled all the pots and pans out of the cabinets.  This was like opposite day!   I needed a nap!  By trial and error we learned that codine and Hill are not friends.  Chip said codine has the same effect on wires him.

Let's rewind.... a year and one month nearly to the day we brought home our tiny little 4 month old cleft repaired baby.  We were to give him pain meds as needed...which in a brand new parents eyes was every 3 hours when he cried because he must hurt!  Gee whiz, I'd cry 24-7 of pain if I'd have undergone a rearranging of my face surgery. So, after like 2 weeks (yes, I'm being serious) of not knowing that my poor baby was crying because the Tylenol with codine was making his tummy hurt not because his reconstructed lip muscles and lip was hurting...I found out I was only to give him the codine like for a couple of days. 

So, now in my eyes, not only have I been the one making my baby cry because his tummy hurts but I have been OD'ing him on narcotics for 2 weeks, I was thinking I should probably send him to a methadone clinic so he didn't go into detox and get the shakes!  Live and learn....right guys?  Live and learn.

Now that you know my hesitation to giving him pain meds just to slow him down when he didn't really need them ~ only to be debunked by the fact that it makes him run around like a crazy drunk monkey.... 
My God has a sense of humor and I know he was cracking up as he looked down over the Hawkins House yesterday.

Finally after bathtime and reading the 6 million and 27th book of the day he wanted to put his bear in the crib and then when his Dada asked if he wanted to go in the crib with the bear he lifted his arms up, snuggled into his pillow and was ready for bed. 

We were instructed to have him sleep with the arm braces on.  That wasn't going to happen.  Have you met my child?  So, Chip and I ran to turn on the video monitor to see how long it took him to crash (or bleed out).  He's a restless fella and has to situate and rearrange everything before he can go to bed.  He has his regular pillow, his bear, his pillow pet, his tiny pillow and his blanket in his crib every night.  His routine is to gather everything and pile it on top of this regular pillow, climb on top of the mountain and go to bed.  I can't make this stuff up.  That's what he does. 
Chip and I watched like we were getting ready to watch a boxing match.  We knew his lip would take a few blows and that he would throw himself face first into his mountain masterpiece and rub his face.  So we stood there over the monitor like goons.  Hill would get situated and we'd both say, "Ok good, buddy...don't move" -then he'd move. We'd let out an "ouch, oh buddy watch your mouth!" - then he'd get resituated and we'd relax.  Finally he went into a peaceful slumber.  I went to make sure all the stitches were good and he wasn't bleeding everywhere and to my surprise everything was good to go and no blood on anything. 

Whew. For the first time all day I looked down at my jeans and black t-shirt and felt like I had been wearing the same clothes for 3 days.  It had only been 14 hours.  That was hard to realize.  What a day.  What a good day, a life changing day in more than one way, and a happy ending. 
This morning, Saturday, Hill woke up at his usual 6:30am schedule.  He was a new man.  Woke up saying "Dada, dada, dada," repeatedly.  I woke up to get him and he was such a little chatter box that had so much to jib jab about this morning.  He was like the Energizer bunny.  We changed his diaper, got dressed, got his milk, ate a banana, read a book then he wanted to go outside (this was all before 7:00.) 

So we went outside and pretend to ride on the lawn mower....

Then did some chores around the house like feed the dogs.....

And worked in the yard....

Just a normal day at the Hawkins...with our cute little boy.

It is not as bad as it looks.  Seriously.
I'm just scared to clean it up!
What I forgot to mention was that Dr. Shell went in under the nose and did a little scar revision and stitched it up.  Then went inside the lip over the lip and on top of the lip leveling it all out and then putting in stitches.  Even though it looks like one big connected bloody funk of a cut between his nose and lip...he really only has like one stitch under his nose and a couple above his lip.  It's not a continuous cut from the lip to the nose.  Anyone want to come over and clean it up so he doesn't look like he just had a nose bleed?  For love of God, after I busted his stitches in the strolller accident last time and made a gapping hole.  I will not do anything but apply neosporin with a Q-tip.  He has licked one of the the inside bottom part of his stitches apart and likes to play with it with his tongue.  It's ok, there are sutures inside holding it together so I'm not worried.  Yet, if I start trying to clean and tug at a stitch and it comes apart...I will die.  I will melt into a little puddle of my own tears.  I can't touch it - - atleast until I know he's not sore.

We know how blessed we are, we have a very healthy resiliant son to hold and hug every day.  Please know your prayers were felt and appreciated more than words can explain.  We know God has been with us through our whole journey.  His presence was shown multiple times throughout the last couple of days (I will elaborate more on that later.)  Thanks be to Him!


kristi said...

Hi just stumbled on your blog. My son is 3 and was born with a cleft lip and palate. We actually just had another nose surgery last week. I'd love to email you. Kristi

Rachel said...

I'd love to contact you but your profile has no information. Please send me your email address.

jengkie said...

Just saw your blog while researchin about cleft lips. My baby is 2.5mos old and would have her surgery when she's around 6mos. Thank you for sharing your experience. I learned a lot what to expect especially the recovery phase.

jen (