Bronch findings ...

    Sebastian's bronch went great , despite a bumpy start.  We were hour and a half late getting into the OR which made Sebastian grumpy and  thanks to some irresponsible adults NOT READING THE FRICKIN' NO EATTING OR DRINKING SIGN in the waiting room he was already begging for food and something to drink as it was. Then add the total of three hours wait of getting into the OR - let's just say that was less than pleasant for everyone involved...

  The next bump on the road has really irritated me since the moment it happened. Sebastian is on Xopenx (prn) and Pulmicort (x1) but he hadn't needed it (Xopenx) that morning so of course we didn't give it to him. Hospital policy says more or less that he needed to take it before the bronch since they will be irritating his airway - okay , I have no problems with that . Well, we wait forever, meet up with all the nurses, Dr.F, anesthesiologist etc all the while no treatment, they come to get him and they ask if he has had his Xopenx yet, I let them know we are still waiting on it . Well, we get the treatment going and everyone and their mother is standing around chatting and waiting for the treatment to be done and I hear someone say " yeah he is taking his Albuterol right now"  ALBUTEROL !?! Sebastian was taken off of Albuterol because he makes his tracheomalacia  worse as well as making him highly agitated. I ask them if that was Albuterol in his neb cup , and the nurse tells me it was so I quickly pull the mask off and tell them he isn't suppose to have Albuterol. 

  Someone then tries to pull a cover their rear maneuver by saying " Oh, it is pretty much the same thing  , we switch it sometimes...  blah , blah blah." The nurse who gave him the Albuterol says " Well, we will have to wait , I will have to call down to the Pharmacy" I am not sure what she was expecting as a response but I just looked her in the eye and let her know that is just fine by me. She wanders off and one the nurses standing around asks if he is allergic to Albuterol , I explain the situation and point out it is written out on the papers in front of all of them . Then the nurse who original nurse returns and looks over the paperwork and says " Oh, yeah , it says it right there" ... Yup, dealing with a genius there.... You can't just give someone a med they don't take  ! GAH !

  I am very grateful for that little conversation because, if not for that he would have had an Albuterol treatment and very well could have come back out of the OR with a trach because the dr thinking his tracheomalacia was *that* bad.

 The actual results were great though , his airway looks beautiful, pink, open and granuloma free !!! The is a little tracheomalacia showing ( could that jave been the partial Albuterol treatment ?? ) but nothing major to worry about at this time.

  He came out of recovery away , calm and wanting to snuggle, ate a red slushy and we were out of there !! Despite being irritable plain out cranky he stayed awake for the rest of the day much to our surprise.

 Today he got up and was running about running at a million miles an hour as if nothing ever happened ... go figure , lol !

Bronch Tomorrow

 Sebastian has his 14th or that 15th bronch tomorrow, mostly to just check on the work they did in September. He was suppose to get in a month after the surgery but in true Sebastian fashion it was a continuous illnesses one after the other , nothing serious really, just snotty kid nose type stuff. Since there have been no obvious signs of problems ( lows sats, retractions, etc) I am expecting a quick in and out trip to the OR.

For the last month or two Sebastian has been totally fascinated with zombies, more specifically , the game Plants vs. Zombies. He now runs around quoting the zombies , nothing like having the 4 year old sleeping next to you whisper " The zombies are coming" at 2:30 in the morning , or waking up to said 4 year old growling " brains !" next to your face - a bit unnerving really .....

                                

  Sebastian is on a serious music kick as well lately, at any moment he is prone start singing loudly and wonderful off key to any of his favorites.

         His favorites would include and in no particular order :

• Pink
• Do-Re-Mi ( from Sound of Music)
• Rockin' Robin by Jackson 5
• The Fray
• All American Rejects
• Plain White Tee's
• Katy Perry
• Shinedown
• KT Tunstall
• Venga Boys
• All Star by Smashmouth
• Love Shack by The B-52's
• pretty much anything that plays multiple times on the radio... lol

  Today I caught him dancing around to a flash mob doing " Single Ladies" by Beyonce on YouTube ... lol... how I wish I had a video camera for that one !!

  Well, time to sign off of here and get ready for tomorrow ... what a fun fill day that is going to be - our first bronch without the trach. Should be interesting to say the least.....

                                                

          

Long Time No Post

I realized the other day just how long it had been since I had posted an entry - I suck ... sorry :o)

There is a reason why I haven't been blogging much - here is a picture from his 4th b-day party- see if you an figure it out...

Notice something missing ? Something white, with a bright red cap on it , say, oh , I dunno , dangling from his neck ?? Yep , he was decannulated ( no more trach) on 9-9-09 and we have been busy ever since ! We have 3 1/2 years of experiences to catch up on !! The surgery itself was so much less than we thought it would have to be ! The malformation I have mentioned in the previous post was were two of the cartilage rings in his trachea had be messed up from the pressure of the trach over time.

In the example above you can see the trach tube is entered in the 3rd and 4th rings of the trachea in Sebastian case, over time, the tube broke parts of numbers 5 and 6 away , causing a 60-70 % occlusion of his airway. Dr.F and company were able to just sew the pieces back in place , opening up his airway and was able to remove his trach ! No graft, no vent , no significant hospital stay !

This being said I now look back in amazement that he was able to breath through such a tiny opening ! With his trach being capped he was breathing through his nose and mouth , it would be like trying to breath through a straw . ( BTW, give that a shot ! Not so much fun) Yet , he would run and play as hard as he could .

Now with the trach out he is Mr.Go-Go-Go !!! From the time he wakes up until he falls asleep , or should I say crashes in an exhausted heap - Sebastian is on the move ! Dancing, running, rolling around , jumping , you name it kid is doing it !

Before the dressing was even off he was playing with chalk on the sidewalk.. didn't really get it but loved when I wrote letters on the ground that he could walk on . Within 2 weeks he was splashing around the shallow end of a pool for the first time over and by 4 weeks he was seriously playing in the water , without a fear in the world !

Since Sebastian, Jamie (DH) and I all have birthdays within 11 days of each other ( Bas- Jan 24th , mine - Jan 26th and Jamie -Feb 11th) I decided we should go to FL and within 72 hours we were on the plane heading there ! Last year Jamie and I both turned 30 but with my mom's passing we didn't feel up to doing anything special for the occasion, of course. I had always planned to celebrate turning thirty and entering that new phase of my life - so this year I got to celebrate my 30th (w/ one year experience) birthday on the beach.

It was a first for both Sebastian and I , walking the on the beach and seeing the ocean and it was kind of neat to do it together :o)

Since this has gotten so long , I will call it quits for now and add some more of our FL birthday adventure later.