Saturday, September 11, 2010

Blogging is My Caffeine 9.10.2010 (and continued on 9.11.2010)

Well, as Aiden's concerned mom, I cannot go to sleep tonight.  Aiden JUST had surgery yesterday, and due to the location of the 'trauma' and the fact that he had a Bronchial Scope (to check out Aiden's trachea...for scarring and what not), he has a lot of thick secretions. PLUS, he is very insecure.  He's been asleep for about 20 minutes and he already had to be suctioned once and he sat up once needing reassurance.  I would, too, after yesterday's ordeal!  I guess what I'm getting at the past three days, I've gotten a total of 5 hours of sleep, so I'm going to shamelessly use my blog to KEEP ME AWAKE!  And oh yeah, to inform you. So, I fore-warn you...there WILL be mistakes...LOTS of mistakes.  So don't judge me. 


Oops, I fell asleep!  Well, even though this may be a dream... an oddly boring dream...I will try my hardest to amuse and inform you...and maybe even wow you with this blog.  Okay...just amuse and inform you...I got carried away there. goes!

 the night before surgery
As you may have heard, Aiden had his first jaw distraction yesterday (Sept 9, 2010).  This jaw distraction is meant to move Aiden's jaw, or as Dr. Patel put it...grow Aiden a jaw...past his upper lip.  (I just can't imagine it yet!!)  I've been looking forward to and dreading this day for almost 20 months. 

 driving to the hospital
The night before surgery, I actually believed that maybe, JUST maybe, I could try to trick myself into getting some sleep.  My ultimate goal was to get 4 hours in.  The reached time was zero hours.  I just couldn't fall asleep...My heart was pounding and my brain was reeling.  I tried....I really tried, but my attempt was futile. I'll give myself a B+ for effort.  :-)  I also have a suggestion...try not to watch that one show "I Survived" when you are already on the border of having a panic attack.  BAD IDEA! So really...I give my self an F for effort.  I should have turn the radio on to "Lite FM" or something that I would WANT to fall sleep just to get away from it.  Long story short...I didn't sleep a wink.  At 4am, I gave Aiden his last gravity feeding of PediaLite... we had to stop any clear liquids by 4:30am and I wanted to give him something so he would feel full longer.  I folded laundry as he ate...then stared at my alarm that was set to go off at 5am.  I suppose I coulda turned it off earlier, but I thought to myself...what if I fell asleep???  (see, I was trying to trick myself! it didn't work) At 5am, I got up, got dressed, made myself put make up on so I didn't scare any little children at the hospital, and got Aiden ready.  He was confused, to put it mildly.  Thankfully I was in zombie survival emotions were shut off temporarily.  I would've bursted in tears so easily. We were out the door at 6am.  Nothing like starting the drive in the dark.

prepped and ready for surgery
40 minutes later, we arrived at Children's Memorial and left our car for the valet.  It's kinda funny, we brought Aiden's stroller...not so much for Aiden...but as a cart for my excessive packing job I did.  Ask Juan, he'll tell you ALL about it.  Hey...we thought we were staying 3 days for Aiden's craniotomy last January and ended up being there 18 days!!  I would rather over pack than to under pack and regret it any day!  When we got to the surgical prep area, my stomach was in KNOTS and I wanted to puke.  I knew Aiden would freak when they touched him in any way.  Just sitting him on the bed tends to send him into a panic. It turned out to be pretty ok.  The worst was changing him into a gown and putting the tag on his foot.  They had mercy this time. We were visited by the ENT surgeon who was going to take the opportunity, as requested by the great Dr. Hotaling, to check the status of Aiden's ear tubes and do a Bronchial Scope and a Nasal Scope.  Then Dr. Patel and a couple of residents came by.  And HE'S the one that put me at ease.  I LOVE that guy.  So genuine, so caring.  He made it easy to put Aiden's life in his hands.  Once we were checked in and Aiden was looked over, they gave him a dose of Verset to calm him down (thru his g-tube).  And thankfully it worked.  We waited nervously, dreading the walk to the operating room. But I was surprised when the anesthesiologist asked Aiden if he wanted to go with her in her arms...and he did!  So she calmly walked out with Aiden and left us standing there not really grasping that Aiden has left us to go to surgery.  Thank GOD!!!!!  I didn't even cry!  I think I was denial...and that's a great place to be!  Then Juan and I headed to the waiting area and just sat there...waiting.  I called people to let them know he was in surgery...we had a little breakfast...then we TRIED to take a mini nap.  I may have drifted out of about 45 seconds.  YES!

Aiden in recovery...
At about 10:30am, Dr. Patel escorted us to the quiet room.  He said everything went PERFECTLY!  I guess I said that I was so excited and Dr. Patel said so was HE.  He said that his little buddy was going to grow him some bone!  He was so optimistic!  He actually told us that we were wonderful parents, and Aiden was such a special little guy.  I think Dr. Patel has a special place in his heart for the Luv Muffin.   Aiden seems to have that effect!  Dr. Patel explained everything to us.  First he warned us that there would be a lot of bloody drainage.  Then he told us he wanted to start the pin turning the next nite!  He told us to start with one turn on each side...that's .5 mm...  for three days.  Then after three days, we will (heh heh...I meant JUAN and the nurse will) have  to do two turns a day on each side...that's 1mm.  He told us to give Aiden a dose Motrin an hour before and to wait to do it while he's sleeping.  We were warned that he may cry a little, but that he should fall back to sleep.  We were then told to come back for a follow-up visit him in two weeks, which at that time Aiden will have an x-ray to see the progress, and then we will know how much longer we will need to turn the pins.  Hopefully all together, only three weeks.  Once the turning phase is done, we wants to remove the external pins (which is another quick surgery) so that the skin will heal over to prevent any further infections. We were already warned that there WILL be an infections at one point or another.  Then we wait.  He said between 2 to 3 let the bone fill in and be good and strong.  At that point, he will assess the bone strength and decide his next plan of action...but definitely, the plate will be removed at that time.  Then either we will wait 6 months for the 2nd jaw distraction, or he will do it then and there.  I am HOPING and praying for the latter.  I just want to get it OVER WITH!!!  After we talked to Dr. Patel, we were escorted to the recovery room.  Ughhhh, I was so nervous about what I was about to see.  And I must was pretty gruesome.  He wasn't kidding about the bloody drainage.  I was taken aback when I saw the pins.  They were so low!  Almost right by his trache.  I was ecstatic!  That meant he wouldn't have to avoid them when he was sleeping or rolling around...they were totally out of the way!  He's so used to having the trach and the HME filter there anyways.  It was a HUGE sigh of relief!!!  Aiden was sleeping...but every now and then, he would wake up and cry.  Waking up from anesthesia is always awful, but I knew he wouldn't remember any of it.  Once the nurses were confident that Aiden was okay and stable, we were taken to the Out  Patient Surgical Recovery Department. 

Wow...that room was SMALL!  It was a crib...a chair...and a lounge chair and a food table.  Oh, and a sink.  No windows, no mirrors, no nothing.  Not that I expected Holiday Inn or anything, but I was still picturing us both sleeping there...Juan and I....for atleast 3 nites.  But, I put that out of my mind and focused on Aiden.  He pretty much slept the entire day and nite, with a few waking and crying spells.  I was relieved when Aiden finally started to come out of the anesthesia fog.  He started clapping and doing his usual silly things.  We even pulled out some of his toys that we brought along.  I was MOST relaxed when I had Aiden sleeping in my arms.  And when he woke up in my arms, he was a happy boy.  The nurses took great care of him.  Great pain control....alternating Tylenol and Motrin every three hours.  That seemed to work beautifully.  Any crying or fussiness was due to the anesthetics.  They DID give Aiden Morphine right out of surgery, but stopped once he was transferred. Aiden was insistent about sitting up.  So we let him.  He read some of his favorite books, but I think sometimes his head hurt and it was too much stimuli.  He didn't seem too concerned about the screws or the incisions on the side of his face...he was more irritated by the tag on his foot and the pulse-ox thingy on his toe.  Later on that nite, we could no longer stand the smell of old blood, and I know it was driving Aiden crazy, so we decided to change his trache tie and wipe him down.  I bet he felt so much better!  One shocker was when Dr. Patel made a personal visit to see how Aiden was doing.  Even the nurses in that department were surprised.  They said that he hardly ever comes in there.  I'm telling you, Dr. Patel is an angel...a saint...a savior!  We really lucked out living a short distance from where he was FATE!  I cannot say enough great things about Dr. Patel. 

Thankful  for the bed we could share!
So basically Aiden slept, played a little, peed, slept, played a little, slept some more, then slept again.  I'm hoping he will have no recollection of this surgery.  At one point, we were told that there was a good chance that we could potentially be going home the very next day.  I was absolutely blown away!  Here I packed enough for a 2 week cruise (just a slight exaggeration).  Let me tell you...I was so relieved.  Then the nurses were kind enough to offer us a bed that Aiden and I could share.  They made us sign a waver saying that they were not responsible if Aiden, God forbid, fell over the rail onto the floor.  I guess under 24 month babies are required to sleep in a crib.  We were so relieved.  But when it came time to was IMPOSSIBLE!!!  Because earlier that evening, Aiden DID have a plug in his trache (which was pretty much expected), I was just too paranoid.  But I did enjoy holding him and I felt safer...and I'm sure Aiden felt safer and more secure.  Later that evening, I traded with Juan and slept in the fold out chair recliner...and I maybe slept two hours.  I was pretty concerned because since we didn't think we would EVER be home by the next day and neither did our nursing agency.  We were told that our nurse that day was cancelled and she understandably took on another case..  I was soooo worried we wouldn't have a nurse the first day Aiden was home.  But luckily, Nurse Sandy was able to come to our rescue.  She ROCKS!!!  After that, I was able to relax. Perhaps that's why I was able to sleep an entire two hours!

At around 8am, all the doctors made their rounds.  We were visited by ENT residents for a quick 'how do ya do'....then Dr. Patel's nurse, Alma, came  by.  She went over everything and showed us how to do the turning of the pins.  Then the plastics residents came by to answer questions.  We were then given the great news that we would be heading home!!! WOOOO HOOOOOOOOOOOOOOOOOO!  So we packed, got ready, cleaned Aiden up.  Of course Aiden was terrified when the nurse was taking off the IV and the tape.  We tried to reassure him, but that didn't help.  We then skipped outta there.  Aiden was pretty cranky...and I don't blame him.  We weren't sure if he was in pain....or if he was just tired and couldn't go to sleep.  He calmed down once he was in the car and fell asleep.  I thought that if he was able to sleep, that he must've not been in horrible pain.  Right before we got home, we picked up some sub sandwiches.  Then by 11am...we were HOME!!!!!!!!!

Once we stepped in the door and Aiden knew he was home, he was a different boy.  Happy and smiling...wanting to get to his toys.  First he sat on my lap and made me clap and the usual...then he wanted DOWN.  He wanted full access to his toys..He made a bee line to his grand piano.  He was sooooo happy!  Surgery?  What surgery????  He did go down for a nap pretty quickly.  I made some calls, ate lunch, then Sandy came (the nurse).  That's when we decided to give the pin turning a try.  Oh my GOD, I was so nervous.  I pretty much hid under Aiden's grand piano.  Aiden was sleeping in Juan arms when they did the first turn.  He did wake up and fuss, but he didn't cry!  SUCCESS!!!  We then let him fall back to sleep and Sandy gave the other side a try.  Once again, he did fuss, but no tears.  His jaw is now a whopping 1/2 a millimeter bigger! Teehee.  But I was so huge tears.  By the time it was said and done, Aiden pretty much said screw the nap and he went outside with Sandy on the backyard swing.  He was so happy to see her!  I then went to sleeeeep!

Well, Aiden woke up at 4am this morning so I brought him in to bed with us and he finally fell back to sleep.  Whatever works! So, I didn't get to finish my blog...I will continue later!  Don't mind any errors...I just need to sleep.  How long can I go on without sleep???  Good Nite and I will continue...with pictures.  :-D

I'm back!  It's 5:30am the next morning and I just finished putting the pictures in, and hopefully I can finish the rest of this blog before the Luv Muffin wakes up.  I slept pretty well once Sandy, our nurse arrived, but I woke up with the worst stomach pain.  Nothing worse than trapped gas...ughhhh!  But I guess I wanted to share that because I tried EVERYTHING to get rid of it and nothing worked. I tried Pepcid Ant-acid, Alka-Seltzer and it didn't go away.  So I thought...heck, maybe I should try Aiden's little bottle of Mylecon.  And wouldn't you know it....IT WORKED!!!  Instantly!!!  I couldn't believe it.  Okay, where was I.... oh, I slept for about three hours, and when I woke, Aiden was sleeping.  He did well all day.  But once he woke up, we fed him...and gave him his antibiotic.  Unfortunately, he threw up.  I hate when he throws up!  He gets comes out of his mouth and nose.  That must burn!  So we stopped his feeding and gave him a bath.  That made him ALL better!  For the rest of the nite, he his old self.  I don't think he felt much pain.  I think he went to bed around midnite...but he was restless.  He sat up at one point...I was able to settle him back down.  Then around 4am, he stood up.  I think he was I brought him to our bed and he eventually fell asleep there.  Oddly enough, I actually fell asleep!  I think it was because he was right next to me. 

At around 7am, Aiden started to stir.  I knew he was an hour late on his Motrin, and that's the last time that'll happen.  He seemed so uncomfortable!  I went to get him some Motrin, and that's when our nurse, Sonya came.  Thank goodness.  I was so concerned that Aiden was miserable that I stayed out with them in the living room and played and read to him.  As the Motrin kicked in, he seemed much better.  I made an exit when Sonya got Aiden's feeding started.  But when I got settled in bed, we heard some commotion...Aiden threw up again just as his antibiotic was given.  Poor Luv Muffin.  After we got Aiden cleaned up and he fell asleep....I took a power nap.  SEVEN hours!!!  I woke up at 5pm!  I needed that soooo bad!

When I went out into the living room, Juan was holding Aiden as he slept.  Juan said it was an okay day.  Aiden's pin turning went well...a little fussing.  Aiden fell asleep around 2pm all the way till 7pm!  He was exhausted!!!  By the end of the nap, I was holding him.  When he woke up, he was very happy!  We had some visitors....Charlie and his fiance and son....Veronica and sweet Karla...and Patty.  They were all so happy to see Aiden feeling better.  Even the swelling in his face went down.  He ate without incident.  The antibiotic didn't cause him to throw up.  Then we decided to give Aiden his first post surgery bath.  I bet he felt wonderful!  We did his care...put his pjs on...and headed back out to play.  His sleep schedule is way off, but we expected that.  He spent some time in Juan's arms watching 'Thomas, the Train' on Juan's Ipod.  He LOVES it!  Aiden was totally himself...if not better.  He kept pointing to the tv every time there was a dog or bear.  I wonder if the tubes the ENT put in is helping his hearing.  I noticed the draining at the pin site has virtually stopped.  YAY!  Did you know that water and salt removes blood stains?  Thank you, mom for the tip! Aiden did finally want to fall asleep at 1am....which isn't really bad considering he had a 5 hour nap pretty late in the day.  He slept great all nite...and now it's almost 6am.  I'd say I'm all caught up with my blog! It's a long one, eh???  Well....I'm gonna add some more pics and call it done.  Then I'll sleep the day away.  I still dont feel comfortable even napping till the nurse gets here. Blogging really helps pass the time!! Hope I didn't put you to sleep!  Adios!

1 comment:

  1. What an amazing story more amazing is the parents Aiden has he is so lucky to have you guys as parents thank you so much for sharing your personal and so delicate story i appraised you for that thank for sharing with us and i finally had time to read your blog what amazing story thanks again