The good, the bad and the ugly....(Part 1)

Hi little man,

You probably noticed that mommy didn't write you a note last weekend.  I'm sorry for that buddy but things were a little crazy.  To be honest things were more than a little crazy they were pretty insane.  I'm going to try my best to recap the past two weeks without writing a novel but I make no promises.  A lot has happened since our last note some of it good, some bad and some down right ugly.

Let's start out with "the bad" which unfortunately progresses to "the ugly".  Your daddy's last note left off after your appointment on Monday the 13th.  Tuesday we didn't have to be at anywhere but you did have two in-home appointments that went off without a hitch.  Early Wednesday morning you, mommy and your nurse Zion headed to the hospital for an early appointment.  As soon we as we got checked in you started gagging and spitting up (which is very unusual for you).  For the next several hours your heart rate was elevated, you were breathing fast and you just weren't yourself.  To make matters worse this wasn't a typical appointment but a clinic in which we had to sit in a classroom with a bunch of other babies and their parents for a presentation then wait in the waiting room for our individual appointments with the nurse practitioner and finally meet with the equipment company.  The purpose of this appointment was to fit you for a helmet since your head is so flat in the back from having to lay still for so many months in the ICU.  Mommy and daddy aren't too excited about this one since you are such a little hot box all the time and you don't exactly like things on your head not to mention we are heading into the summer months.  We know that it's something that needs to happen sooner rather than later but we still aren't looking forward to it.    Let's hope you surprise us as you have with so many things and just see it as a really cool accessory.

Wednesday was exhausting but by bedtime you had settled down and were acting like yourself again. We all assumed it was just an off day and whatever was going on had worked itself out.  Mommy was certain that you would be just fine and we convinced daddy that he should still go on the trip he had planned to Texas.  You tried to sneak in daddy's suitcase so you could go visit your Gigi, Grand dad Rooster, Uncle Sebastian, Aunt Alexa and Pappaw.  I promised they will all come to visit you again soon and before you know it we will be making that trip to Texas with daddy.  Although we couldn't all go mommy was very happy that daddy had a chance to see his family and give them hugs from all of us.

Thursday morning you made it clear that whatever was bothering you wasn't gone yet.  After much debate mommy and Grandma went ahead and took you to your pulmonology appointment that afternoon hoping they may have some answers.  The nurse and doctor spent several hours with you but after careful examination and some cultures they didn't find anything to be the cause of your issues. You did have some drainage around your trach for which they gave mommy some drops to clear things up but in the end no bacteria grew on the cultures.  We kept the Tylenol pumping through you and once again you seemed to settle out as the evening progressed.  Mommy really felt like you were over the hump and Friday we would be back to business as usual.

Mommy was wrong.  Friday morning started pretty rocky and this is where we move into "the ugly."   Mommy had to call the pulmonologist to give her a report since you had gotten worse from your visit the day before.  She wasn't able to see you and said you probably needed to go to the ER based on how fast you were breathing, your increased heart rate, low grade temp, gagging and increased work of breathing.  The other option was to see your pediatrician immediately.  Once again Wendy came to the rescue.  She was able to fit you into her schedule and back downtown we headed for the forth day this week.  Between doctor Hall and Wendy they literally checked every inch of your little body.  They did urine cultures, checked the respiratory cultures from the day before, x-rayed your chest and belly yet didn't find anything significant.  Because they had ruled out all of the extremely serious concerns we were able to return back home and check in with them over the phone.

The next two days are a bit of a blur.  Daddy was out of town, we didn't have a nurse either night or one of the days, and you were sick.  Thank goodness for Grandma and Grandpa.  Without them staying up half the night, waking up at the crack of dawn, fetching this, suctioning that, rocking you just so and feeding mommy I'm not sure how we would have made it through.  Things all kind of came to a climax Sunday morning when for the first time mommy thought there was a chance we were going to have to call an ambulance.  Thankfully Dr. Hall and Wendy had sent us home with an inhaler in case of such situation.   We were able to get your breathing and heart rate under control and as Sunday progressed you improved by the hour.  You were still fussy and tired but by Sunday night  your breathing was close to normal again and your heart rate was down.  You even squeaked out a half smile late Sunday night when daddy got home from the airport.   It took another 2 days for you to regain your smiley playful personality but it was obvious you were on the mend.

So what was the cause of such a rough few days you ask?   Good question.  Mommy has a few theories.  One is that you got your first tooth!   That's right between Saturday and Sunday your first pearly white peaked through your pink little gums.  Mommy also realized that we had weaned another one of your medications the previous week so you were still getting the night dose but not the day time dose which may have explained why mornings were so rough.  Lastly you had a lot of extra secretions and there was this new gagging maneuver that you had learned.  The week before during your scope Dr. A had removed some scar tissue from above your trach.  Mommy believes that this now allows you to cough up a lot of the secretions that you previously couldn't move past your trach.  Because you aren't used to this you haven't quite figured out what to do with it and mommy believes it is making you gag.

Although I hate that you had to go through such a rough few days I am extremely proud that you were able to work through it and not end up in the hospital.  You made it through 4 doctors visits in 5 days while being sick as well as a weekend without nurses or your daddy.  Mommy is super proud of how tough you have become and how much you are able to tolerate.  You have always been a strong boy but your tolerance and ability to bounce back from things is growing each week.

We still have "the good" part of the story left but mommy can barely keep her eyes open so I will write you part two tomorrow.  Stay tuned.........

Mommy and daddy love you Connor!

-Mommy