Let's Remember the GOOD

Darn it!  Another hospital stay with our Jett man.  

He had been doing really well too...those darn $#&@%$ viruses will get you every time.  I'll give you quick details on the hospital stay, but then I really want to focus on how GREAT Jett's month really has been.

On Thursday, Jett started showing signs that he may be sick.  He had been congested for the previous week, but I attributed that to allergies.  In fact, that very day, I had gotten a prescription for Claritin in hopes that it would help his stuffy, mucousy (is this is word?) nose.  Well, he began to develop a fever.  Tylenol and Motrin weren't helping.  I went to teach dance in the afternoon and came back to a very irritable and hot baby.  His temperature was at 102, which is never fun, but a temperature I can deal with.

Over the course of two hours his fever jumped up to 105...and that, my friends, is when Cody and I jumped in the car and took him to the hospital (Omaha Children's Hospital).  Usually we feel comfortable keeping him at home when he's sick since we have all of the medical equipment, but when a temperature reaches 105 it can get scary...and it did.  Within minutes of his temperature reaching these dangerous heights, Jett began seizing (small seizures), his teeth started to chatter, and his color turned blue.  Cody and I immediately put him on our pulsoximeter to check his oxygen levels.  He was dipping down into the 70's.  Not good.  Luckily we have oxygen tanks in our home.  Even though Jett hated every second of it, we taped the oxygen cannula to his face and away we went to the hospital.

At the hospital, Jett received all kinds of needle pokes and tests.  Results came back positive for Parainfluenza 3 and Rhino Enterovirus.  Poor Jett had TWO viruses to fight.  The docs quickly booked him into a room and observed him from there.  They also had Cody and I update Jett's DNR.  If you don't know what a DNR is, consider yourself lucky.  We really do not like making those difficult decisions.

I captured this sweet moment at the hospital.  It was about 1 a.m. and Jett was miserable.
Daddy to the rescue!

In these two pictures, Jett is saying, "It's okay Mom...I got this."  What a stud.

He was able to come off of oxygen within 24 hours and is now resting up to get rid of that stinkin' fever.  We are at home now and Jett is loving his snuggle buddy...a doggy rice bag. 

 Random, I know, but he loves it. He smooshes his face into it as he is sleeping. The last I checked, he didn't have a temperature so hopefully we're on the up and up!

Now, for the details of Jett's FANTASTIC month...

Up until the beginning of March, no medication could even TOUCH Jett's chorea.  He was miserable almost 24/7 because his poor little body couldn't stop tensing up and moving.  It was really painful for Jett and extremely painful for us to watch. Well, the neurologist decided to try Jett on a new medication that is only used in the adult population...Adults who suffer from Huntington's Disease.  At this point, we were desperate to try anything.  The medication, itself, you are unable to get in a regular pharmacy.  Therefore, we had to wait for it to be shipped to us.  I won't get into the nasty details of HOW blasted LONG it took to get to our doorstep, but we were super excited when it showed up.

The drug is called Xenazine (Tetrabenazine) for those who are curious and I feel that it has done wonders for Jett.  He is a different kid! Not only has it calmed him, but he has become more aware of his surroundings as well.  He focuses more on our faces and listens very intently to anything we say.    We are also discovering his unique ways of interacting with us, including MORE SMILES!  An even bigger bonus, Jett is gaining weight finally.  He is now up to a stout 13 lbs 10 oz.

I gave Jett his first popsicle!  He loved it, but then choked on the juices.  It's all good, I just had to suction him out.  It was still worth it for the smiles.

Jett went on his first road trip to Kansas City.  He was seriously an angel the entire time.  

For more on that trip, click HERE

 We also visited the Lego sculptures at the botanical gardens that are right by our house.  Jett learned how to push a lawnmower with daddy.

He dressed up with me for St. Patrick's Day and also took a horsey ride on Kusaba. (Bottom left pic)

We visited the zoo and the jellyfish were Jett's favorite part. 

 He loved the bright colors and how slow they were moving.  We probably stood there for an hour.  Im sure people were like, "Get a move on, lady!"

We've enjoyed the spring weather that is headed our way and hopefully here to stay...

and Kusaba stays true to form by always photobombing our pictures. Good doggie.

 Jett also learned to bite my nose.  

It's a shame that such great progress had to be impeded by sickness, but we are going to focus on the positive and kick these viruses in the a@@!  Better days are ahead.

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.