Ear Tube Surgery

Yesterday was Jett's ear tube surgery at Children's Hospital in Omaha.  He has been experiencing chronic ear infections and has also failed his most recent hearing tests.  We also noticed that he has been vomiting more often, but it wasn't necessarily related to his reflux.  It seemed that any sort of movement, whether we were picking him up or turning him on his side, would trigger a vomiting episode.  I'm guessing that the fluid build-up behind his ear drums were making him experience some sort of motion sickness.  My poor guy!  

Motion sickness has to be one of the worst feelings in the world...and to have that ALL DAY, EVERYDAY?  Ugh. Not fun.

Ear tube surgery is typically an easy breezy operation and is performed on a routine basis.  It only takes about 10 minutes once the child is asleep.  Adults who receive the surgery don't even have to be put to sleep. We were really excited for this surgery because we knew that it would relieve the pressure in Jett's ears and help him feel better.

One HUGE concern, however, with any type of surgery for Jett, is with anesthesia.  He does not respond well nor can he be given the "normal" anesthetic medications.  

Jett's brain stem is severely affected due to his condition (Pontocerebellar Hypoplasia).  If you can remember clear back to your physiology classes...the brain stem helps regulate body temperature as well as a number of other very important things.  This puts Jett at risk for Malignant Hyperthermia.  If interested, you can read about it here, but just know that it's pretty scary and can be life threatening.

Whenever our anesthesiologists hear that Jett is at risk for this condition, red flags come up everywhere.  They become a little "more on their toes" and aware of the implications of giving Jett the wrong combination of anesthetic.

I have to say...the anesthesiologists here do a FANTASTIC job.  

They are so caring and attentive. I am continually amazed at their professionalism and compassion.

The surgery went wonderfully!  

When the nurses brought Jett back to me, he had cold rags wrapped around his arms and in his diaper to prevent a temperature rise.  He was still really sleepy and would get in such a deep sleep that his heart rate would drop pretty significantly.  However, after a little stimulation, his heart rate would come right back up.

Jett is pretty mad about his mint-green hospital nightgown that he had to wear.  Oh and this is what I look like at 6 a.m. Pretty awesome...no makeup on.

Right after surgery with his cooling rags around his arms.

Just cuddling with his teddy bear

We were able to go home after a few hours and I can already tell that both Jett's hearing and vomiting has improved.  Yay for a happy baby!  That makes for a happy mommy and daddy.

On a side note, whenever I leave the hospital here in Omaha, the nurses all give me a hug and give me words of encouragement.  How nice is that?!  I am a big fan of nurses and doctors and anesthesiologists and enterologists and pretty much anyone in the medical field who knows what they're doing.  

The end.

P.S.  Sorry for the horrible pictures...they were taken from my phone!

Our Friday the 13th Story

Everyone has to have a Friday the 13th story, right?  Well leave it up to me to schedule surgery for Jett on that day!  To tell you the truth, looking back, we feel like what I'm about to tell you was a blessing in disguise...but I'm going to keep you in suspense for a minute.

This week has been absolutely amazing!  Cody has summer break and is FREE for a whole month.  Can you believe it?  I have him all to myself and I love it.  Normally, we would plan a fun get-a-way or take up some flying lessons again.  Well, with Mr. Jett, we are unable to do that kind of stuff right now.  He likes to keep us on our toes and close to a hospital.  Even though we have stayed home this week, we have made the best of it.  Cody has worked on our basement theater room and I have enjoyed organizing our storage room.  By the way, I'm not kidding when I say "enjoyed". Organization makes me happy.

We have tried to take Jett out each day to run errands, but we don't go too far.  If Jett got his way, I think he would choose to stay home and cuddle with his fuzzy blanket while looking at the ceiling fan. No joke.  He loves that thing.  Anyway, one day we were feeling adventurous and bought Jett his very first swimsuit.  We took him for a "dip" in our neighbor's swimming pool.

He tolerated the not-so-warm water pretty well, but was sure to give us some mean faces every now and again.

Now for our Friday the 13th story...it began on a cold, stormy night.  Ha!  We wish.  It actually began in 105 degree weather with 100% humidity.  Yes, a true nightmare.  Anyway, as I mentioned, I scheduled a surgery for Jett.  His current feeding tube was falling apart and was just not doing the job.  The only way to change it was for him to go under anesthesia and have the gastroenterologist (who will go unnamed) place a new one. Ugh. We dislike anesthesia with a passion.  Jett has always had some sort of "reaction" to it.

We spent two hours prior to the surgery talking with the anesthesiologists and meticulously planning the procedure so that Jett would recover better than he has in the past.  They were extremely efficient and wanted to make sure that Jett was as safe as he could be.

The surgery took place at 2 p.m. and Jett recovered remarkably well.  This was a Friday the 13th miracle!  It was now 5 p.m. and the nurses were ready to discharge us...we were seriously so excited that Jett didn't have to spend the night at the hospital. 

"Let's start him on his feeds first," says Kathleen (who, by the way, was one of our favorite nurses ever), "You know, to make sure that there aren't any leaks or anything."

Well, of course.  This was definitely a wise piece of advice and so we started Jett on his feeds.

BEEP! BEEP! BEEP! The feeding pump kept alarming saying that there was "No FLOW".  What the heck?  This is a new tube and shouldn't be happening.  I grabbed a syringe, filled it with water, and began my attempt to flush the tube.  No such luck.  We had a big problem on our hands. The tube was kinked inside of Jett's body. Cody became livid and I actually kept my cool for the first time ever.

Come to find out, the gastroenterologist never checked his work once the tube was placed.  He literally just put in inside Jett and didn't take an X-Ray or anything to make sure that everything was in its proper place. We were very frustrated to say the least.

"Are you saying I have to get the sleepy medicine again? Ugh!"

Just our luck, the gastroenterologist had left for the day...heck, he probably was already on his way out of Omaha leaving on family vacation.  We called him and he did NOT want to come back into the hospital.  He tried everything he could to make it so that he wouldn't have to come back in.  Cody got even more livid.  The nurses were amazing and were right there to help us.  I'm not sure how it happened, but they got the GI doc to come back to the hospital.

Jett went under X-Ray.  Sure enough, a large kink was seen. The nurses took him right back to the operating room for a SECOND operation.

Jett is the toughest guy we know!  He went through a lot in one day and stayed strong the entire time.  We were able to take him home that night around midnight...just in time for Friday the 13th to be over.

Earlier I had referred to this mistake as a blessing in disguise and it actually was.  The original feeding tube that the GI had placed was way too long for Jett's little body and would have caused him a lot of pain.  During the second surgery, the GI decided to switch for a shorter tube.  Jett has been feeling wonderful this week.  It might be a coincidence that he hasn't experienced the tummy pain that he usually endures, but whatever it is, we are so grateful.  We love our happy, little fighter Jett.