Unstable Airway Plan of Action

Today we took both boys back to Children's Hospital in Pittsburgh to consult with a new ENT Dr. Mehta who specialized in subglottic stenosis and airway issues.  He was super cool with the boys and I am happy we were referred to his airway clinic. 

We were due for an ENT check up anyhow as we have not been seen since Dr. Ottesen left CHP almost two years ago.  We had more to discuss than just the airways.  Both boys have a perforated ear drum but Isaac had two are both of his are classified as large holes and may need repaired.


We have decided to go forward with another scope to determine the size of their airways so that everything is documented for future surgeries as to what size breathing tubes to use.  They will scope and biopsy their trachea.  Both boys will have their ears evaluated and fixed if need be.  Both boys with have two teeth extracted and dental work done.   Then Caleb will go forward with his hernia repair and the lump that we felt a few weeks back is going to be removed from his neck.  The doctor said we might as well get as much done under one anesthesia as we possibly can so its a lot but they felt they could handle it.

I was totally hoping for a summer surgery to keep from missing to much school but the soonest we could get them both in on the same day with the same surgeons is Friday September 19th. 

We have some answers, we have an action plan and now we move forward. 

After today's appointment we had lots of time on our hands to do nothing as we are staying in Pittsburgh overnight since we have another appointment tomorrow.  The boys favorite thing to do at Children's is to goto the Pop Shop and get some popcorn so that we did..


and then we watched a tv show in the waiting room and Isaac played Angry Birds on the iPads provided for the kids to play on... will share photos later as I am not at home to save on my computer but boys were good sports today and we enjoyed a quiet day of not having to rush around and drive a total of 5 hours back and forth... That gets old and its tiring for sure. 

Tomorrow we head to Autism Clinic for med checks. 

Strawberry Jam with Honey

Today was officially the kick off of my canning season for 2014.  This may not be exciting to you, but it sure is to me :)  Since this is Thursday I can classify today as Thankful Thursday due to the fact that its Thursday and I'm Thankful that I know how to preserve food and have all the supplies to do so.  I am thankful that my mom and grandma who taught me how to can when I was younger despite the unwilling attitude I used while learning.  

Today, I canned 4 quarts of fresh picked strawberries and made 10 pints of strawberry jam.

I have made strawberry jam for several years now, but I made it differently this year as I have been eating differently.  I am making a conscience effort to cut out as much sugar as I can on a daily basis and eating no processed food.  Thus far I have lost more than 20 pounds and I really do feel good.  No stomach bloating or pain, more energy and dropping pant sizes quicker than I could have imagined without exercise.  (Honestly, I'm saving exercise for when I plateau and need that bump to keep losing)

In the past I have made most of my jam with Splenda to cut down on the sugar content.  Its very tasty and better for you than using the 8 cups of sugar it calls for making a regular batch.  BUT this time I thought I would try no sugar and some raw honey.  So far it tastes wonderful.  I traditionally make the last pint as a sample jar and eat it on bread while its still warm.  Its a bit tangy and tart but it has the delicious flavor of a strawberry still there.  Often when you put the called for amount of sugar in the jams I feel like they are just so sweet you really lose that true fruit flavor.

Warm jam on bread.. YUM!

Here is the Recipe I used:

4 pounds of washed and hulled strawberries
3/4 c. Raw whipped Honey
1 c. unsweetened apple juice
1 1/2 packages of No Sugar Needed Pectin

It's a Keeper!!

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.  

Mr. Caleb is Pleasantly Surprising

This morning was Caleb's ECHO procedure.  I had already had it in my head that he would not cooperate and we would have to do it at Children's on Monday during his hernia repair procedure. After posting on Facebook yesterday requesting prayers I had a fellow mom suggest to desensitize Caleb to the procedure by showing him YouTube videos of what all is done.  (Thank you Keri) I did that.  As the video was playing I was touching him and explaining that it wouldn't hurt and the little girl on the screen isn't crying so it must not be uncomfortable.  We talked about it several times telling him that we were going to so and see a doctor (we call everyone doctors, its just easier) and they would be looking at his heart on a TV.   When we asked him if he wanted to see his heart on a TV he signed "yes", so I was feeling a little confident that he was going to handle this just fine.

We get to hospital and the best distraction for my twins is the TV.  So we watched Price Is Right and we clapped along with the silly contestants and got all silly.  They called Caleb back and we headed right into the room.. It was going smoothly thus far!

There was a big comfy chair upon entering the doorway and he decided that was where he was going to plant his behind and sit.  The technician asked him to remove his shirt and lay on the bed.... That's when things started to get a little tricky.  He started to fuss and twist and turn trying to get away.  We asked her if we could go slowly and explain everything to him and she was wonderful.... she even took the doppler and the goop and put it to her chest first to explain what she was going to do to him.. He was still very hesitant and signing "no, no, no" pretty constantly but then super daddy stepped in and asked if he could hold him on the bed to help him.  The technician said she really did need him to lay down and I got that feeling right then that it wasn't going to work.  Daddy went ahead and sat on the bed and put Caleb on his lap and asked if we could at least start out that way and see what would happen once things started..

SOOOOO..... in daddy's Caleb was fine, he was still, he was interested, he was perfect!!!! He sat on daddy's lap the entire time and she was able to see all the areas of the heart that she needed to.  When Caleb was getting squirmy she would turn the colors on and he would start staring at the screen again is awe of its changing colors.  He actually sat still for about 15 minutes, perfect to get a read on everything that they needed to see for this test.

Who woulda thunk it??!!

I am so proud of the fact that he is tolerating more things and even if he doesn't understand what they are doing he trusts his mommy and daddy enough to know if we say it won't hurt, its not going to hurt... HOORAY for progress...

Now

We 

Wait....... For results

AND Surgery is set up for Monday with a 6:30 am arrival time.  Surgery will take a little better than two hours so continued prayers appreciated.

Prayer Request for Caleb

Caleb will be having surgery on Monday June 16th to repair an Epigastric Hernia.  He has had this for several years now and its been getting a little bigger and a little bigger each year.  Its still pretty small but the surgeon told us that it will have to be repaired and having it done as a child is better than waiting until he is a teenager.  It will grow as he grows and become painful as the years go on. So, Monday Caleb is scheduled for dental work and we opted to go ahead and have the hernia repaired as well.

Here is my prayer request.  We went yesterday for his pre-op appointment with his pediatrician. He actually was very cooperative and calm, so calm that the doctor was actually able to get a good listen to his heart.  She asked when we see the cardiologist again for him... "UMMMM?! That is the only "ologist" we don't see" is what I told her.  She said she was hearing a murmur and felt that we better go ahead and have an ECHO done before surgery on Monday.  It could very well be nothing and its just a precautionary test or we may have to add the cardiologist to our large list of doctors.

I need prayers that he will stay still for the test, that we can explain to him what is being done and that it won't hurt him.  We need to have him understand that if he just sits still for a few seconds it will all be over and we can go home.  I hope that tomorrow is one of those days that Caleb surprises me.  I pray that this is nothing but a precautionary test that comes back normal.   There are so very many many many online Down Syndrome mommy friends who's children deal with heart issues and I have always felt relieved that we escaped that common symptom of Down Syndrome.

I would appreciate your kind thoughts and prayers for my sweet Caleb over the next few days.  I have heard that this is a painful recovery and he has to miss a whole weeks worth of fun activities at Camp Confidence this year.  His brother Isaac will actually get to go do something alone without this twin for once in his life..... (and mom's little nervous about that too..LOL)

Freiberg's Infraction

Yet another word that I learned today that I would not have cared if I had never learned it...ever!

Camille has had some pretty bad toe pain since at least December.  We saw our pediatrician about it once and talked to physical therapist about it while in treatment.  Both said that there is nothing to do for a broken or stubbed toe and to just wait it out and the pain should go away...  Well, several months later, the pain is still there and often worse than the week before.

I made another appointment to see our pediatrician last week and saw the Physicians Assistant there that we love.  She said that this has lasted long enough that it suggested an x-ray.  X-ray was taken Thursday and Friday morning they called and said they had already set up and appointment with a specialist.  When I asked if it was broken she said "Well, no, but there is something there that definitely needs attention from a podiatrist.  We got you an appointment for Monday morning"  YIKES!  That was quick is it serious?  And then she sprung the new word on me that I researched this weekend.  

Freiberg's Infraction.

We went and saw Dr. Hewitt this morning and he stated that this is a common issue found in dancers, which Camille is not.  Its also more found in females between the ages of 12 and 14, but its apparently rare enough that people often don't find it until its to late.  As a matter of fact, the x-ray was read as "normal" at the hospital, it was only when the specialist peeked at it they found the Freiberg disease. Camille's issue was advanced enough that she needed treatment, or if left untreated, she would need surgery in 2 - 3 years..  SOOOOOOO

Camille is starting the summer out like no 12 year old pre-teen wants to.  With a "medical boot" that she has to wear for at least the next six weeks... No activity, no pressure on the foot, no skating, no jumping on trampoline, no SWIMMING??!!!!! (can only sit on pool edge or in water but no bouncing or swimming)  Bummer Camille... but it beats the alternative of surgery in a few years.  Chin up girly, at least we can decorate it with colorful stickers or something ;)