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.

Surgery and Glasses, Not Necessarily in That Order

Around 8 this morning Sebastian has a bronch and surgery. He bronch showed that his trach has caused a malformation in the trachea , not uncommon , so he will need another surgery next month to fix that. To make a long story short Dr.F, along with a colleague will go in and attempt to remove said malformation, if everything stays where it is suppose to ( his airway not collapsing in on itself) then they will remove the trach and we will see how things go. If his airway *does* collapse , which everyone agrees in most likely the case, then they will remove a bit of rib cartilage and use it as a stint, close up the stoma and he will be vented for 3 days to recover. The part I am dreading the most is seeing him vented again....

Also , during this procedure his tonsils and adnoids were removed so he is not a happy camper right now. Over all though he is doing well, as I write he is playing the Wii and sporting a chocolate pudding mustache and goatee, the whole eating pudding and other assorted goodies (ie junk food city !) is going over great .

Recently Sebastian has acquired glasses, he is awesome with them. Roughly two weeks ago we went to a new eye Dr who , after one visit, decided to put him in glasses. Apparently his right eye is*so* bad that it is essentially turning off the distorted impulses to his brain. Good thing is that is fixable with glasses and ... ready for this... 4 hours of patching is left eye everyday... to strengthen his eye. Hopefully this will work over time and we can avoid yet another surgery .

On the good news front Sebastian has been accepted for a wish through Make-A-Wish and we will be heading to Disney later this year ! We are all so excited.

Lastly , awhile back Sebastian was accepted for a Littlest Heros photo shoot and last week we finally were able to get together to do them - talk about worth the wait !! Not only are the preview pix fantastic the photographer was brilliant with him ! I *HIGHLY* recommend her to anyone interested in getting some picture done !http://karaguffeyphotography.com/blog/2009/07/19/little-hero/

Trip to the Zoo

Spent the day yesterday at the Zoo with Sebastian's best friend John and his mom. Despite the drizzle and two worn out momma we had a good time. As usual , when the weather is less then perfect the Zoo is pretty much empty. Something amazing happened there, the boys played on a playground set while the momma's sat on a bench , snacked and talked !!! Now this may be an everyday occurrence to some people but when you have two special needs kids who require nearly constant assistance of some sort this is a wonderful moment. We watched in amazement (and some moments sheer terror) as our boys climbed up little ladders and slid down slides on their own .

I am particularly proud of John climbing up the little three rung ladder behind Sebastian , it was the first time and despite the urge to lunge across the playground and pull him to safety of solid ground his momma just quietly walked nearby him in case he slipped or needed help , all without him ever seeing her.

At the Zoo we managed sit within touching distance of an amazing Bengal tiger who constant lip licking kept us in check of where we sat on the food chain... thank goodness for that insanely thick glass between us.

I love when there are nice, cool days and we can spend most of the day outdoors, Sebastian needs to run and go-go-go so much that he just goes slightly bonkers when he is cooped up , of course who doesn't ?

Steroids are DONE and my boy is back !!

Finally , finally , finally got my son back !! The steroids are totally out of his system and Sebastian is back to his normal happy go lucky self !! I am so grateful, I missed him so much , it was almost as if I had a totally different child while he was one the steroids, you can tell he is relieved to be off of them too.

We have been busy around here lately, back tracking just a bit , we have been to Thunder Over Louisville, Pegasus Parade Preview, The Zoo a few times ,saw Everclear and Gavin DeGraw in concert and not too mention visited a ton of parks.

Sebastian did surprisingly well at Thunder, I thought he may be scared of the fireworks , he just named the colors and informed me they " Go boom" and "They sparkle". He spent the entire 30 mintues in my arms and wrapped in his blanket but otherwise didn't seem all that phased. He did get a bit irked when they played a snippet of his favorite Jason Mraz song "I'm Yours" ( Yeah the one that is played a million times a day everywhere you go !) and then went into another song, he wanted to hear the whole thing.

At the Pegasus Parade Preview Sebastian wore a plastic pith helmet ( he usually loathes hats) around while visiting all the floats and balloons then ended his evening dancing for about 30 minutes straight to a dance groups music while they performed, totally upstaging them !

We have hit quite a few local parks since the weather has been nice , suddenly Sebastian LOVES to swing . He will swing as long as you will push him , after the 45 minute gig I did last week I realized it is time to really work on teaching him to swing himself, phew !

Headed to the Waterfront for a concert which is poured down rain the first 20 minutes of , we hid under neither the overpass with all the sane people until it stopped then joined all the happy , rain soaked people to enjoy the concert a bit closer. After Everclear played we were lucky enough to get to meet them and get autographs from everyone. Once we were done meeting them we watched a few moments of Gavin DeGraw , who I have to admit sounds pretty dang good live ! I have heard him on the radio and always thought his stuff was okay , a pleasant background filler , if you will , but live I actually enjoyed it.

Yesterday we spent most of the day at the Zoo watching all the animals, including Sebastian's current favorite , the lemurs, lol.

Last week we *FINALLY* got the paper work back from the local school district making official what we already knew ... Sebastian has mild autism. I am excited now we have a "name" for it so we can go about looking into local services to help us deal with it . We are fortunate because unlike many dealing with autism , Sebastian's symptoms are not major . Infact, many people just meeting him would just pass him off as a silly or odd child and most people are perplexed Sebastian would be considered to have autism. Now we will head to some local places for more in depth studies , I am thinking in the end we will end up with an Asperger's label as well. We are okay with all it though , like I said , in our case , we are blessed in the fact it is only mild and I honestly feel that with services Sebastian will be able to have a totally "normal" productive life.

Wagon Good Time !

Yesterday between grumpiness and rain drops Sebastian got to visit with his friend John , which delighted him. John's mommy and I unleashed the boys on Wal-Mart and let them run amok , lol.

Afterwards we stopped Sebastian's Nana and Papaw's house where he got to play with everyone and his new golf set. The set has three different little plastic clubs , favorite is purple putter which is played with so much the actual head kept falling out of the post -- repeatedly. Instead of getting upset he either brought it to someone and proclaimed "Fix it" or eventually just did it himself considering every time he swung it the head went sailing...lol.

Part of the fun also included playing with the dogs and talking who ever he could into pulling him in the wagon. Later he ended up pulling the dogs around in the wagon , one doggie loved it , the other ... not so much.

Still weaning off the steroids and the kid is still eating us out of house and home. Also, last night I noticed Sebastian is getting a hint of steroid cheeks either that or it is the 34092340794 calories he is taking in everyday , lol !

The Easter Egg Hunt That Ended in the ER

Okay , not totally accurate but wow what a great title , lol.

Easter eve was a rather eventful day ! It started at 4am which Sir Grumpypants making an appearance to two already exhausted parents . After a hour full of tears ( not just Sir Grumpypants either, lol) we finally got him calm and back in bed heading towards the land of Nod.

Later in the morning when Sebastian woke up we did the normal routine of getting up which entails him yelling " Ready to get up ! " from his crib until either DH or I appear. All bubbly and awake with the thrill of being alive I skip into his room to give him a toy to keep him busy so I can make a quick visit to the other end of the house so as to avoid any mopping . As I walk into his room I see his hand at his trach which he rarely , if ever , bothers. I fuss at him a bit and he pulls his hand away and ... there is no trach ! The dang thing is laying in the bed next to him ! He is just talking away and acting totally normal while it sounds like a tornado siren has suddenly started to sounds in my head. As I am threading the new ties on the new trach I realize I have no ideal how long his trach has been out because his sats never dropped... ( One good thing came out of the trach coming out ... lol)

After a little argument of " No trach , No trach " and a wee bit of wrestling to make the morning more interesting I get the trach back in with no trouble. Keeping in the spirit of the now , crazy morning I just give up and settle us down infront of the Wii which causes Sebastian to hop, holler and all kinda of other crazy , cute things while I attempt to gather my now shattered nerves.

An hour later we head back into his room for his normal morning meds which include an albuterol treatment. After his breathing treatment I go to suction him and it won't go past 4 , for those who don't know this is where the robot from Lost in Space starts freaking out and yelling " Danger , Danger Will Robinson !" Normally the suction cath should pass through with no resistance so usually this means a plug .... in this case it seems it was another bad trach... We now have a total of ten of these now , the circumference of the trach tube gets smaller and smaller inside which doesn't allow the suction catheters to pass though and remove the mucus ... bad bad thing folks...

So , at this point he has had his albuterol which causes his tracheamalasia (floppy airway) to get temporarily worse and we are home alone so I am not comfortable changing it , just in case.... lol. Also , now we are down a trach so I only have one spare trach . I call our DME ( medical supply people) and get to have a lovely go round about needing a trach - now - not on Monday. Three hours later we had a new one tucked safely away in our emergency bag.

Despite having to cancel the day before due to Sebastian's asthma we headed over to his Grampu and Grammy's house for an Easter celebration with high hopes. After an egg hunt that Sebastian enjoyed immensely - the actual plastic eggs were his favorite part - ( He has a serious thing about plastic eggs currently , lol) I noticed his breathing sounded funky. I called the pulm and after a discussion we decided Sebastian needed a trip to the ER. We had a quick dinner before we went because we knew it would be the last chance to eat for quite awhile then headed out.

Sebastian did surprisingly well at the ER and was fine until about half an hour before we left, it was 4 hours past his bedtime after all ! At the ER they doubled his Pulmicort and restarted his Prednisone in hopes of boosting those lungs and sent us home .

At this point Sebastian is starting to wean off the steroids and thank God for that because they make him insane !! I liken it to living with Sybil , he just has no control over his behavior/emotions. I feel bad for him , it can't be much fun to be like that, it sure isn't fun to live with it. Now with the weaning it has started to subside some , much to our relief !