Friday, August 31, 2012

One Less Hurdle! (2nd Pollicization Surgery) 8.30.12

Well, another surgery has come and gone!  Aiden has had Pollicization Surgery on his right hand.  I did a little counting and believe it or not, this was Aiden's 10th surgery!  Wow....and he's only 3 and a 1/2 years old.  But each surgery brings us closer to the light at the end of the tunnel...the ultimate goal...decannulation.  We're almost there!

So, for those that are not familiar...pollicization surgery is a procedure in which they take the forefinger and rotate, then reposition it to make a thumb.  Aiden was born without thumbs.  Well, he's got them now!  (There is a link explaining pollicization surgery in my link section.) Our surgeon is Dr. Light...he practices out of Loyola (in Illinois...near Chicago).  He is AMAZING!!!  He did Aiden's first pollicization surgery on his left hand a year ago and it works beautifully.  Seeing the results of that surgery made the approaching surgery less dreadful.
We also made the week before surgery  less stressful by visiting my Mom, Lynette, my sister (and family), Jeff, my brother (and family) and Renee, my cousin (and family) out in Washington State. We had an amazing time!!!  This trip was our first 'vacation' with Aiden.  Sure...we visited family, had quality time...(which I was in serious need of), but this visit, we got out and did vacation-y things. Aiden got to see the ocean for the first time...ride on a boat for the first time...spend time on an island for the first time...take a hike for the first time.  He enjoyed each and every bit of it!!  He loved the sand...he loved the FREEEEZING cold water...he loved the outdoors.  Aiden saw and did more things at his young age than I have in first 20 years of my life!  And that's what we wanted.  He also got much love from his Washington family!!! It was also a great way to spend my birthday, which so happened to be the day we flew back home.  We celebrated by going out to dinner during the week with my mom, sis, bro, and cousin (and their families).  I was also surprised by a cake and a painting from Hannah the night before we headed home.  We also got to sample a crab that we pulled out of one of Derek's cages on the way home from Paradise was DIVINE!!!!!!! Although we were extremely sad to leave, Aiden was so happy to see all of his toys once we got home. He had no idea he'd be seeing GrammaDonna in a few days.  She flew in to help during the surgery week.  When she showed up Tuesday night, he was sooooo thrilled!!!  Little did he know, the next day, he'd be getting a new thumb...

Aiden's surgery was bright and early....just the way we like it!  Funny thing is...Aiden actually fell asleep in the surgical prep room.  My mom joined Juan and I at the hospital.  She is like a sedative to me! Thankfully, they didn't do anything to Aiden as we waited... no IVs.  They even let Aiden stay in his clothes.  We got our usual visits from the anesthesia team to go through the procedures.  Then Dr. Light stopped by to say hello and he talked to us a bit.  Dr. Hotaling (Aiden's ENT Doctor) also came by because he was going to take advantage of this surgery time to take a look at Aiden's ears and the tubes...he also wanted to do a bronch (look down Aiden's trachea and maybe see if he could get a visual on his palette...we still don't know what kind of cleft palette he has).  Aiden was quite relaxed once he woke up from his little nap.  When it was time...they gave Aiden a sedative through his g-tube and Aiden drifted off to la-la-land.   What got me is, when they came to get him...they laid him on the bed gurney, put a blanket on him and rolled him away...and he was sooooo brave!!! I'm getting choked up as I type.  OK...gotta move on...that's always the hardest part of surgery for me!! We were told that surgery would last four hours...three for the hand, and an hour for the rest. 
We took a deep breath and went to the cafeteria to eat breakfast while we could.  After we ate...we moved into the surgical waiting area and waited.  We passed the time doing some cross word puzzles and trying to snooze a little.  After a few hours I got nervous knowing that the surgery should be coming to an end.  Soon Dr. Light came by to talk to us.  He said his part was done.  He seemed a little hesitant to say that the surgery was a complete success...I could see it in his eyes, I heard it in his voice.  He told us that he thought his thumb 'should' be ok and but that he would check on it again soon...just to be sure.  That left me a little uneasy as we waited for Dr. Hotaling to finish his procedures.  After a little time, we got a call from Dr. Hotaling and he told us that everything went well...they placed new tubes in Aiden's ears. He told us that his stoma and trachea look AMAZING.  He couldn't really get a look at Aiden's palette because his jaw was so clamped shut. He said there wasn't an obvious opening, so we think it may just be a soft cleft palette...just like his mom.  We'll see.  Aiden will definitely need surgery to release his TMJ in the near future.  We were then notified that Dr. Light had to go back into surgery because Aiden's thumb wasn't looking quite how  he would have hoped.  UGHHHH....that was unnerving, to say the least.  After Dr. Light was finished, he told us that because Aiden only had one vein providing blood flow to the thumb, he had to 'unhinge' the large muscle because it was pushing on and compressing the vein and not allowing proper blood flow.  He also told us that Aiden will need another surgery to re-hinge the 6 weeks...or 6 months.  The most important thing was to keep the digit alive and let it heal.  The additional surgery will be outpatient and take 15 minutes or so.  I was relieved that he didn't postpone the inevitable...waiting till 2am to do an emergency surgery to save a dying thumb.  That's what makes a great surgeon!!!!

After 5 or 6  long hours, they called us up to see Aiden in recovery.  My mom had to stay back in the waiting room until we got our overnight room.  At first, Aiden was pretty peaceful...out of it,quite frankly.  We gave him lots of kisses. After a little while, as he woke up more, he wanted to get up and OUT.  He was NOT thrilled with his arm being tethered to his body...especially his right arm.  He was irritable, he even had a little fever...that made me nervous.  But the nurses reassured me that it was due to all the warm blankets they kept piling on him to keep him warm after surgery. Finally, they moved us up to his room for the night.  Ohhhh...the memories of the PICU...brought back the nightmare of our two visits we had last winter...with pneumonia/rsv and the Kawasaki's Disease.  Yuck yuck YUCK!!!!  Bad BAD memories.  Thankfully we had our own room....and we had a bed.  (not a crib)  We brought my mom up at that time.  Aiden was a bit agitated, coming out of the anesthesia fog, and I'm sure there was some pain from the bronch and the hand surgery.  The codiene helped, that's for sure.  My mom and I ran down to the cafe to grab some food for us while Juan hung around to suction Aiden when needed.  Whenever we are in the hospital, Aiden's trache gets sooooo dry!  Plus there was some blood, which was to be expected from the bronch.  Once we ate...we took turns napping.  It was a LONG night.  Aiden finally started showing some smiles and interest in the Ipod...which had his favorite...'Thomas, the Tank Engine' early the next morning.  There was no more throwing up (which is a surprise)...and few tears.  I even pulled out the laptop to play some dvds for him.  We were visited by Dr. Light early in the morning.  I was actually the only one up at the time with Aiden.  He said the thumb looked great and that we could go home if everything else was okay.  YIPPEEEEE!  Huge sigh of relief!  The rest of the morning was spent waiting and waiting and WAITING for the discharge papers and instructions.  We had to call our nursing agency and thankfully, we had a nurse on call.  We asked if she'd be at the house by 1pm.  We finally made it home by 1:45pm...not bad for having major surgery to turn a finger into a thumb!  That still amazes me.  Aiden was a little wobbly, but THRILLED to be home.  He went straight for his toys and used his left hand for everything.  He would get frustrated sometimes, but I think he adjusted rather quickly.  It was so great having a nurse there because once Aiden crawled up on my lap and fell asleep, she grabbed him and put him in his 'crib' and us adults passed out for a few wonderful hours.  It was MUCH NEEDED!!!!
The rest of the evening, Aiden did very well!  He played and ate, just like normal. I can't remember the rest of that's all a blur.  But one thing I DO know is...once Aiden went to bed, he slept like a ROCK!  He didn't seem to be in any pain.  The next day, we decided to go with Advil, instead of Tylenol with Codeine.  It's less harsh on his bowels and he makes him  less groggy.  The next day, Aiden's nurse and my mom took Aiden to the park and he had the time of his life...swinging and going on the teeter-tauter. And that's how the rest of the week went!  My mom stayed till Sunday and she helped us out so much by keeping Aiden entertained and happy.  An entertained and happy Aiden makes a happy ME!!  We missed her as soon as she left. 
Monday was Aiden's follow up visit.  Thankfully Juan was able to meet up with us because I was a NERVOUS WRECK!  I knew Aiden would freak out...and of course, he did.  Dr. Light took off the huge bandage and took a look at this thumb, and gave us the thumbs up. (no pun intended).  He replaced the bulky bandage with gauze and sent us over to the PT area to have a hard splint made. Aiden freaked out for that, as well...but he recovered quickly and I'm sure he was happy to know that he had his arm back.  Today you would not know he has had surgery, other than the splint on his hand.  One thing about having his right hand rendered pretty useless is...he is using his left thumb like crazy!  It's awesome to see.  He even uses his right three fingers a little.  Our Luv Muffin is so resilient!  Now we have to ask Dr. Light when he can go to school, which started this week.  I think that would make Aiden very would be so good for him. 
So...craniotomy...check. Jaw distraction...check.  Left-hand Pollicization...check. Right-hand Pollicization...CHECK!  Now...after he has his quick thumb revision, we hope to have jaw joint surgery...then we see what palette work needs to be done, if needed...and hopefully (if he doesn't need another jaw distraction due to him growing out of the previous one), DECANNULATION!! Fingers crossed.  Many prayers and positive thoughts is what we need.  Oh, and some sleep! Bye, everyone!

Below are some more pictures of our trip to Washington State....ENJOY!

Nisqually National Wildlife Refuge

My Birthday Dinner
Anthony's Hearthfire Grill
Ava, Hannah, Mom (Donna), Aiden, Lynette, Me, Ian and Jeff


Ocean Shores
Juan, Derek, Lynette, Max and Ava

Me and my Luv Muffin

 Hope Island....

The End!


Saturday, February 4, 2012

Much Needed Update Feb. 3, 2012

HELLO! Wow, it has been how many months since I have updated my blog? I'm ashamed. But it has been a whirl-wind of a year, let me tell you! I spent the first part of the summer recouperating from MY genioplasty surgery. Aiden enjoyed Summer playing at  his park, playing in his backyard, playing with his GrammaDonna when she came to visit, played in his swimming pool....even took a trip to his Aunt Jennifer and Uncle Pete's lakefront cabin! His best summer yet!

Aiden's Pollicization Surgery...
In August, Aiden had his first pollicization surgery, which is taking his forefinger and rotating it to create a thumb. See, Aiden was born with no thumbs. Dr. Light, his AMAZING surgeon said he was a perfect candidate because he used his forefinger like a thumb...and very well at that!  The surgery took place at Loyola Hospital, the same place Aiden was born and stayed for 2 and a 1/2 months. Let me see if I can remember that day. The whole day was such a blur, for all of us. Of course I had no sleep...I was a nervous wreck. Prepping Aiden went well because they didn't even put on his gown till after he was sedated. I always hate when they take him away. Breaks my heart EVERYTIME!! 

This surgery took about 4 hours, I believe. Aiden didn't seem to be in any discomfort...Dr. Light told us that the surgery was a complete success and that we just had to observe the blood flow to the 'new thumb' over night.  They put a pain blocker underneathe his arm that would last a few days.  He had a cast on with a sock sling which I think drove Aiden crazy. I think the worst part of the hospital stay is being in a room with a child who was crying like crazy.....and a mean mother that was yelling at him every time. UGH!  So basically, everytime her baby would cry, Aiden would cry...even if he was sleeping. Aiden could NOT rest, and we were a nervous wreck.  We finally asked to be transferred to another room.  First, Juan slept for a few hours.  I can't remember Aiden being up much.  I think he was in a a peaceful daze. The following morning...very early... just when I was about to try to sleep, Dr. Light and his team came in and told us that Aiden was going to be released!  We were thinking we'd be there for several days!  I guess the blood flow to his finger looked great!  Aiden was VERY happy to be outta there.  When we got home, he was ready to PLAY!  He was rolling around without a care in the world.  The surgery we dreaded for weeks had come and gone....a big sigh of relief!
Going HOME!
Driving home from hospital...
Right after we got home from hospital...


We were told by our surgeon that movement may not return to his new thumb for three months.  Recovery was slow...we had to visit Dr. Light almost weekly to check on his wound.  At one point, we thought the open part of the wound was infected...turns out that it was 'sloth' or 'slough'... dead skin that needed to be removed.  Juan and Aiden's nurse said that it was very good I didn't go to the doctor that day, they had to scrape the dead tissue away and Juan said he could tell that it was very painful.  UGHHH!  My poor luv muffin!!!!  After that visit, we made sure that we let the hand soak in the bath, cleaned the wound every night, and put Silverdine on it.  Slowly but surely, the wound started to heal. After many visits, many new casts and slings....I'd say a month and a 1/2 later, the cast came off!!!  And to everyone's amazement, his thumb moved!   Dr. Light as astounded....but we knew he'd move it early, cuz that's what Aiden does! :-)  Surpasses everyone's expectations.  After his cast was off, he started using his thumb like it was there his whole life.  Picking things up became easier....I could tell instantly. One hand to go!  It is quite an accident that I'm updating my blog tonight, but his SECOND pollicization surgery was supposed to happen yesterday!  But because this winter has been riddled with one cold after another, one flu after another...and one suspected pneumonia...we decided to postpone the surgery until the spring.

Aiden with his amazing surgeon, Dr. Terry Light
Let's see, what else has been happening.  Ummmm....we went to Washington State over the Christmas Holiday!  We flew out there Dec 13th and stayed until the 31st.  19 wonderful, most memorable days!!! Aiden had the best time.  There wasn't a moment when he said he wanted to go home.  It was 19 days of being loved by GrammaDonna...his cousins Hannah and Ava...Ian and Michael.  I thought for sure Aiden would get sick right away like he did last year...but he only came down with a cold three days before we headed home.  For that, we were VERY thankful!!! There is so much to say about our trip...But I feel that the pictures speak for the trip itself.  I think that's how I'll remember it best...I added some pictures at the end of my blog.

Aiden's Third Birthday...
Aiden had his 3rd birthday on January 14th.  We only intended to have a small party at the house because everyone has been sick.  But it turned out to be a big bash!!! It was incredible...Aiden is truly loved.  We went with the Thomas theme...OF COURSE!  Before we sang 'Happy Birthday' to AidenAiden.  But of course, people clapped...and Aiden cried.  Awwww, Aiden....he recovered quickly...until everyone clapped again once the candles were blown out.  I gave Aiden a taste of the ice cream and all was well.  During the cake and present opening, we Skyped my mom...that was awesome cuz it was like she was there!  You've gotta LOVE technology! Aiden got lots of new school clothes and toys.  And whenever we asked his age, he would show us three fingers. So cute.

Every time we asked Aiden how old he was...he'd show three fingers :-)

Aiden's First Day of School...
Last, but not least....Aiden is going to school!!!  He actually started 2 weeks ago...but after a successful first day, he had to go home early on his second day after throwing up.  At first we thought it was nerves...but it turned out that he was actually coming down with the flu. He stayed home for the next few days, and then just when we were about to send him back, he came down with his fever AGAIN.  We knew that wasn't right, so we took him into the Urgent Care Center.  The doctor tested for strep and it was negative.  She took xrays of his lungs and she saw what she THOUGHT might be the start of she put Aiden on strong antibiotics just to be safe and we kept Aiden home from school for that week.  He got better pretty quickly.  On Tuesday, he went back to school and all the kids were SO happy!!! The weather has been gorgeous, so all week, they've been going outside to the playground.  Aiden has been such a social little boy.  The routine is getting easier and easier every day.  Yesterday morning, after he was all dressed with his coat and hat, the bus was late. Juan called the bus company and they said they got caught by a Juan told the nurse to take him in and unzip his coat to wait for the bus and Aiden started crying!  He wanted to go to school!!! He kept waving 'bye bye?!'  That made me soooo happy.  Our nurse said that Aiden loves school. His teacher, Ms. Carrie is so sweet...his classroom is AMAZING!!!  Of course I teared up the first day we left him there.  It is such a HUGE milestone.  I can see the changes in him already! 

Well, I tried to update as well as possible.  In a nutshell...Aiden is a THRIVING three year old!!!  It's been an amazing year...and it's only going to get better. We started him on a smoothie diet...feeding him purees through his g-tube and it's been a great success.  We still feed him by mouth.  We find him actually asking for it...that never happened before! So.... I promise to try to keep this blog updated. That was actually my New Year's resolution...lets see if I can keep it up!

Trip to Washington 2011
Our visit was filled with family, food, playing, visiting, Christmas tree decorating, zoo light seeing, singing carols with Barb, and lots of laughs!

Christmas Eve was magical....

Christmas Day 2011 At My Brother's House...

Aiden and his Uncle Jeff
The Rest of our Trip...
GrammaDonna has a swing in the basement!
Ian, practicing his killer tricks...

Aiden's Early Birthday Celebration...

Going Home... :-(