Tuesday, June 17, 2014

SURPRISE!!!! Caleb has an Unstable Airway

 Sunday, June 15th.... Happy Fathers Day!!

We started our day with a yummy breakfast outside on the deck together as a family praising God for the wonderful father Tom is and for all the blessings we have because he is such a hard worker and provider for our family.  Then we were off to church and a relaxing afternoon before we headed off to Pittsburgh for Caleb's hernia repair and dental surgery in the morning.

We decided to head to Pittsburgh for an overnight stay to save us from having to leave our house at 3 am like we did a few months back for Isaac's last outpatient surgery.  After that trip I realized I'm getting to old to go off of four hours sleep and still be required to function.  I was so exhausted it took me a day or two to recover.  To avoid this again we went and stayed with Tom's little brother Bill and sister in law Dulcie.  It was nice to sit and visit and see their apartment for the first time before they move into their new home they just purchased.

Monday, June 16th

Caleb decided to wake up at 4:30 am and "STOMP" up and down the steps to practice his stairway skills.  We do not have stairs in our house and Caleb thought this was a great time to get better at going up and down them himself.    

We left at 6 am and arrived just before our scheduled 6:30 am check in.  I was rather impressed that Caleb was signing doctor and giggling with no anxiety on the way into the hospital.  Maybe this whole doctor thing is getting better??!!  Welllll, then they put the ID bracelet on his wrist and the story changed.... he was mad!!

As per my request with the same day surgery scheduler prior to surgery we were escorted to a fun underwater room with the sensory bubble light brightly displayed.  Caleb loved it!!!!  I found out about this when Isaac was in last time.

It made me dizzy...LOL

As we were talking with the four different doctors who would be tending to Caleb's procedure (General Surgeon, Anesthesiologist, Pain Management, & Dentist)  he was enjoying some much needed bonding and playtime with his big sister Tristin.  He LOVES to play with her hair and run his fingers through it and make a mustache on his face with it.

The versed came and Caleb was happy in no time, so off to operation room he and daddy went.... 
*** NOTE: Daddy would NOT allow me to take photo of him in scrubs,,, party pooper *** 
Once he was fully asleep Tom met Tristin and I in the surgical waiting room.  We were told it would take about two hours so at that time we went ahead and got some breakfast and began eating it.   Tristin realized she did not put enough brown sugar in her oatmeal and asked Tom to come back to cafeteria with her to get some more.  I was sitting alone enjoying my coffee when the General Surgeon and the Anesthesiologist approached me and asked me to come into the consultation room with them.  At first I wasn't to alarmed but then I realized that we were no where near the forecasted two hours of wait time.

They started by saying he is doing wonderfully and he was sleeping.  Then they said that they unfortunately had to cancel the surgery.  I then grew very alarmed and wondered why in the world it would have had to be cancelled.  The Anesthesiologist went on to say that he knew he was going to have to use a smaller breathing tube for him due to his subglottic stenosis and he started with a small tube.  That one would not pass, he went to the next smaller tube, that one would not pass, down to the next size and it would not pass.  At that time he consulted with and ENT to come and scope Calebs airway and found that his subglottic stenosis has progress to a Stage 2 level.  There seems to be some scar tissue that is building up and causing more of a narrowing than he had before.  This is most likely caused from having breathing tubes inserted as a NICU baby and from the many surgeries over the years.   The General Surgeon, ENT and Anesthesiologist all agreed that the case must be cancelled due to an unstable airway.  My heart sank.

My husband then came back from the cafeteria and the doctors so graciously told the whole story over again to him.

The Anesthesiologist said he is so surprised that Caleb does not present with any symptoms such as Stridor and Croup, because he should probably have those symptoms daily.  He certainly does have Stridor and Croup when he is getting sick, but not on a daily basis.  

One of the most memorable comments a doctor ever made to us was when the boys were 11 months old, they had just both had their first scope of their airway done due to constant Stridor and Croup.  It was diagnosed at that point that they both have Subglottic Stenosis.  Dr. Bluestone told us that he cannot even understand how either boy is breathing without a tracheotomy yet their oxygen levels were fine.  That was a very scary statement and one I will never forget.   Now I hear almost the same kind of scary news 7 years later.

After the surgical team consulted with the breathing clinic and a new ENT we are going to see it was decided that since the boys are identical and because Isaac is actually the "more ill" of the twins, they want to evaluate them both next week.  I was totally thankful and impressed that they would suggest that and carry it through with an double appointment next week.  Apparently this clinic is a VERY BUSY one.

Please continue to lift the boys in prayer.  I am trying to not let this freak me out, but...... it's freaking me out!  My prayer is that the Lord give us the strength and understanding we all need to help the boys and bring their airways back to a healthy size to avoid this scare with future surgeries.

For those of you reading this far and unfamiliar with our beautiful family, our boys Caleb and Isaac are 8 year old  identical twins both with Down Syndrome, PDD Autism, ADHD and a list of medical issues.  They keep us busy, they scare the bejeepers out of us sometimes with the unknown, they bring us joy and sorrow and yet we feel doubly blessed in good times and bad.

Please comment if you have been through this ordeal with some words of encouragement and wisdom.
By the way, Subglottic Stenosis is what qualified each of my boys for their wish from Make A Wish.  


Tracy Weber Miller said...

Stacy, I got the pleasure to work with your 2 boys a few weeks back and I immediately fell in love with them both. I apparently am the 'horse' lady, and quickly learned how to sign 'horse' that day. I pray for you and your family regularly with all that you go through. You are a strong woman and hope you recognize that. I will continue to keep all of you in my thoughts and prayers. -Tracy Weber Miller

heidi, lorna, and dan said...

we love you all <3

Rosa Ortiz-Lane said...

Your boys are so cute! I glad to hear everyhting went well. I am praying for you. I have a 6 years old with Down syndrome and Autism.