And the beat goes on

Things are mostly quite on the home front, thank goodness, we like it that way !

Sebastian is still chugging along on the Tobi(antibiotics) which STINK to the high heavens ! After washing his hair tonight I had to change his trach ties , a process he is already none to happy about and was made grouchier about due to being sleepy. I use a little trick I learned off another trach mommy , secure the trach in place with suction catheters so I won't need to hold the trach in the entire time and allows me the use of both hands. As I was trying to slip the last Velcro piece in the falange's hole Sir Grumpy Bottom grabs his trach and yanks it straight out, decannulating himself - weeeeeeeee...

Quickly untying the suction caths I finish replacing the ties and we go about putting everything back where it goes. I notice under his ties just as funky and irritated red just like his stoma and under the flanges. I have always been intrigued by metal trach chains , looks like now may be the time to locate and procure some - soon ! With 95 + temps ( even a steamy 98 -100 forecasted one day - eek !! )his poor neck could use a break.

As usual, well as of the last few months, Sebastian has spent most of the night so far coughing up some lovely little gifts for me and I have already suctioned him twice , once having to switch out catheters because the secretions were so thick. Keep in mind this is with 100 % humidity from his cup and .50 Pulmicort x1 daily , I am hoping he is just bringing up the yuck that has been hanging out in his lungs and we aren't going to have to readjust his daily maintenance meds.

On a last note , Sebastian has began two and even a couple THREE word phrases, my favorite being "Help...Me " when he is getting frustrated with something and needs a little assistance.

93 and trampolines

That would be my son's best bowling game so far - pretty good since it was the second of the only two games he as ever played. Also, sadly enough he beat both his parents in both games.. what can I say the kid is good ?!?!

On a fluke (and a really good Thursday special) we ended up at a bowling alley and Sebastian was having a good time even before we started our game. The music was blaring and all around him people were sending various colored neon balls down brightly lit lanes until they crashed and made loud noises. Apparently this is the recipe for fun to a two year old.

After donning a pair of size 8 bowling shoes,(seriously , did anyone else even knowthat toddler size 8 bowling shoes even existed!)picking out his very own neon yellow ball and adjusting the ball ramp Sebastian started his very first game of bowling. The first game was DH :56 Me:86 Sebastian:93... the second was DH:86 Me:85 Sebastian:93 In our defence he did had a ramp and bumpers... lol.

He was really good about taking turns and towards the end was even carrying his 6 lb ball and putting it on the ramp all by himself - with mommy and daddy on either side of course. Between turns he would amuse himself by cheering us on and boogieing down to the music.

Earlier in the day Sebastian went to a gym to climb, tumble, bounce and balance for some unofficial PT. I am proud to announce another first ... running the long trampoline ! A light bulb finely went off inside his little blonde head, he got the ideal and was off running with the best of them. This is such a good thing as it helps improve his balance and with his motor planning. As of next week he is being fitting for PattiBobs to assist with his balance. PattiBobs are simply shoe inserts ()for kiddos with mild to moderate gaint issues/low tone. It will exciting to see what improvements that make !

I Love You Dave !

My son, the precious child I have held in my arms and fed countless bottles too in the wee hours of the morning, the precious child I coaxed to take those long awaited first steps, the same precious child that comes asking hugs after getting a boo-boo (even if he did do it on purpose) ..... is a royal smart alack !

For awhile now when we have asked him to say "ma-ma" he smiles that silly little smile of his and says "da-da" and vice versa. Months later this has been upgraded to "Mom-me " and "dad-de".

Tonight in route to home I ask him to say " Sebastian"... pause.. Again I ask him to say his name.... pause... a third time I ask him to say Sebastian ...

He smiles and says "Dave"

Sorta, Kinda, Maybes

After going over some older blog posts I have noticed I write in approximates most of the time.

As a parent of a trached former preemie I live a life of approximations. Of course there are a few solid things ... we meet with the therapists for one hour at a time weekly, we have be at the Dr at X:30 in the morning , there are exact doses of certain medications, the trach really needs to stay in the neck . ;o)

Otherwise we are floating adrift in a sea of possibly maybes.

Possibly today Sebastian will run normal,

Maybe he will be able to speak in a appropriate manner for his age,

Possibly this next procedure really will be the last needed,

Maybe he is just really tired not getting sick-again,

Possibly he just needs the bump in his O2 for tonight only,

Maybe we will get through an entire meal without me having to dig food out of Sebastian's mouth because he has stuffed too much in it again since his jaw muscles are still too lax,

Possibly he will sit still long enough to get all his treatments so he won't wake up at three AM scared and gasping for air.

Maybe we will get the trach out before the fall

Possibly won't - you never really know

Maybe for once something won't happen on the way out the door and we can arrive somewhere on time !

Possibly someday I won't have to worry about Sebastian splashing in the tub

Maybe someday we can snuggle up and nap together in the same bed

Possibly the next time we go to the park he won't get "stuck" pacing the ramps

Maybe next summer , his third, he will touch sand for the first time

Possibly he will even be able to play with chalk

Maybe some day I can drive my son in the car alonw without a oxygen monitor and a mirror to keep an eye on him

Possibly the next medicine will work

Don't get me wrong, I know in the overall grand scheme of things our life with Sebastian is pretty tame. He is amazingly strong and thriving insanely well for a preemie and I am thankful for that. I know he is stable and can go for super short periods at least without the trach and not code on us. With everything he has been through he is one super lucky little guy and we have it easy peasy compared to many of my fellow trach mommies, just this evening I am weary from the thought of it all.

At the pulm Sebastian was prescribed Tobramycin 2x daily x 30 days which we had to get through another DME... it arrived today. A huge bag stuffed with more medical goodies to stuff,wedge and cram into his own personal PICU.

Possibly this medicine will work.....

The momma's not happy

By a fluke we got Sebastian into the pulmonologist today and found out my poor baby has been harboring two separate bacterias in his lungs/airway for the past 3 months. :o( I am so angry I could spit nails ... a few shards of glass boot !

When we originally called the pulmonologist in mid April and about the super stinky (seemingly happened overnight) red stoma, yellow secretions, hacking, runny nose and eyes and all around grumpiness which those who know him know this is a big sign something is amiss. Being one of the only two ped pulmonologist locally , both of which are in the same office, they were understandably booked up. They called in the antibiotics for him and armed with a refrigerator of yogurt to counter act those yucky tummy problems and inevitable yeast flare up we started on it.

By early May we were at the pediatrician with it , they with ordered a trach culture (swab) and for some reason sent us to the local children's hospital to get it. The lab techs at the children's hospital said they didn't know how to do it ( yeah...I can't believe it either...) so they wanted us to take him into the ER to have someone in there do it. Like I am really going to take my already immune suppressed kid with a trach (aka. a hole that leads straight to his lungs) in to the germy ER for something as utterly mundane as a trach swab. So I take the kit and did the culture myself to get my kid out of the place as quick as possible. A few days passes and when it was time for the results , viola , no one could find them but after enough grouching she finally caves and gives me some antibiotics for the kid, the only the same ones that the pulm put him on despite not working the first time and regardless of me arguing over the uselessness of it.

Two weeks or so pass we return to the ped. this time we see the Nurse Practitioner and she put Sebastian on the same antibiotics but at a higher dose since it seems to knock the illness out for a week or so , logic is the medicine is working but he just needs more of it.

Yet another two weeks pass , nasty yeast flare up around the trach but the hacking and yellow secretions gone. The following week yeast almost under control... then the smell and yellow secretions began flaring up...anyone else seeing a pattern here ?!?!?!?

Back to the Ped's office again.. this round we get one of the other peds in the group who does a trach swab right then and there himself to send off and has has blood drawn to test in the office before we leave. Turns out that , shock me shock me , Sebastian's white count is elevated so after a wonderful exchange this ped trusts I actually know my kid better then anyone and despite not wanting too, gives me a prescription for a new antibiotic. This one works a bit better but also bombs in the end.

This is what has been going on for the past months, during this time we had a blood test, two trach swabs, three rounds of one type of broad spectrum antibiotics , a fourth different antibiotic (all oral) , added more nebulizer treatments, extra pulmicort, two different types of yeast treatments for the countless flare-ups, played with what we did trach care with ( the 1/3 peroxide water solution, just water, Eucerin and water mix) and changing the trach out at the first sign of redness around the stoma. That's not to mention having to cancel his T&A surgery , prescious lost hours of therapy he missed, miserable days with a grumpy , yucky feeling little guy and long nights of little sleep and lots of frightening coughing added into the mix.

After all this we got the pulm today who goes through the normal gamut of things then leaves the room to see if they can somehow access his test results. Less then ten mintues later they return and low and behold , in his file is the results of the culture and it showed he has had these two bacterias hanging out in his airway since friggin' APRIL !!!!! Can you even fathom how ticked off I was ?

Unfortunately I can not recall the exact names of the strains but the pulm said it was just normal junk that our lovely little trach kidlets get colonized with, nothing major to fret over and put Sebastian on a month of inhaled antibiotics. If needed we will continue in on a rolling schedule throughout winter.

After a few moments it occurred to me that if it is just on of those normal trach things shouldn't the one of the three people we saw at the pediatricians office at least had a clue. Now, don't get me wrong, I am sure they don't deal with many trachs there but I feel if they are taking on the responsibility of it they should at least familiarize their selves with it.
I inquired if the peds should have picked up on this and from what I understand this was a pretty basic ,open and shut kind of thing. *sigh* So , now I am feeling bad my poor kid ran around more or less sick for the better part of three months for no good reason....

Also the pulm is guessing this all started out simply enough.. Sebastian caught a little bug which , like most little bugs caused extra secretions and created a nice little breeding grounds for said bacterias to flourish. When given antibiotic #1 it just treated one of the bacterias and caused a yeast infection which can also knock down the immune system and that allows lucky bachelor #2 ...I mean bacteria # 2 to grow even more all the while never being treated. Since he had bacteria #2 still thriving , as well as normal spring allergies to help provide a germ breeding ground it then helped bacteria #1 to quickly regenerate..... Everyone still with me ??

On a fun note we got to visit Sebastian's NICU nurses from both hospitals he stayed at and showing off his silliness and smiles all the way. I also got to meet one of Sebastian's long time blog readers for the first time, she now works at one of the NICUs he was at, it was a wonderful moment.

Also went grocery shopping and Sebastian rode around in true and apparently very fun style !

Still sick but no worse

The title says it all....

Sebastian is still all gunky , at nights coughing up thick yellow tinged secretions , getting in coughing jags when not wearing his cap and the owner of one not so happy looking stoma. Also, he has been waking up during the night asking for a extra bottle, which I obliged knowing he feels poorly and he hasn't been eating so great, but secretly I think he just needs some additional snuggles.

As for his eating, Sebastian has been sustaining on yogurt and cereal bars mostly the last few days - throw in a few bites a grilled cheese here and there. Yesterday I managed to hide some broccoli and cauliflower under enough cheese he actually ate some and today he willingly and knowingly (lol) ate about a cup of carrots. I felt like I made the winning touchdown at the Superbowl ! This is how we know Sebastian is feeling less than stellar , he gets super picky, lol, otherwise he will try and pretty much eat anything.

Speaking of eating and the such Sebastian is now up to 36.5 pounds and 37 inches tall ! Not bad for a former 2 pound preemie ! According to the CDC ( http://www.cdc.gov/nchs/data/nhanes/growthcharts/set1clinical/cj41l017.pdf ) Sebastian at 30 months is now above the 95% for weight and right below 75% for height. Guess that is why so many people comment on him being a "big boy" when we go out.... if they only knew ... lol.

Weather was nice yesterday so we plopped the kid on his bike and took a walk. He has been wanting to get to ride on it so badly but with the weather and ozone action days it just hasn't been do-able.

Bummer

With school looming in to AM is seems Sebastian won't be able to go, which is double sad because he just got his very first big boy back pack this weekend. Over the last 24 hours he has started to come down with something yet again. His little nose is just a faucet , coughing his head off and his stoma is getting red again on top of some super funky tummy troubles. The red stoma could easily be just irritated from the secretions coming out from his super powerful coughs , I am hoping that is all it is , the kid has had a rough enough time lately !

Good news he doesn't seem too feel too yucky just yet - as long as he has his meds in him, lol. Today he spent most of the day just hanging out in his room playing quietly with his cars and wooden blocks.

<~~ Sebastian's self-portrait

Nana,Papaws,Grandpu, Grammys and lions... oh my ???

Thursday was family day , we went to DH's mom's home to visit for awhile where he , as usual went about his business of attempting to purloin his papaws watch and just being silly in general. I know what you are saying... Sebastian ? Silly ? Never....

Thanks to his Nana who took him to the mailbox with her to get the day's letter he every so often he now begins to chant " Mail , mail , mail " I am thinking renting him out for a Blue's Clues cover project (http://www.youtube.com/watch?v=jTSO45IuIpY) for a little extra cash. ;o)

After taking care of some other business we headed to zoo to met up with DH's dad and step-mom where Sebastian had a blast sliding down the splash park slide with his daddy and grandpu. He absolutely adores the splash park , every so often we pause, do a "trach check" where we more or less wipe his face and neck area down so nothing sneaks into his stoma. We also have a trach mask on him while playing but most of us know just how much that will help , especially on a Flextend, lol.

Apparently Sebastian spent a little too much time in the splash area because he went a wee but dusky around the lips prompting a quick stripping and change of clothes to warm up that pretty much coincided with a suctioning, lol. Best part was once I removed his cap he coughed up most of everything and we only got a small amount when we actually suctioned him.

Chitter Chatter

As many of you know Sebastian's severely delayed speech as been on ongoing issue for us around here. Until a couple of months ago he was evaluated at 3-5 months speech now he is in a solid 15-18 months with some 18-23 months , forgive me if I am off a month or two here and there but you get the picture, lol.

Signing wise the kid has taken off ! He is well into a 100+ signs , which amazes even me considering we never had any true quality of speech services until four months ago. Verbally he has blossomed as well, chattering all day long. He is constantly picking up new language , verbal and signing which we are so proud of !

Some of his vocabulary includes : Mom, Da-da, bah (bottle), ball, drawl (draw- duh, lol) , dah (dog) , kee ( kitty), karh (car), peas ( please) we-ah (wheel) coo-kee (cookie), key , booh (book),weed (read), yeddow (yellow), wed (red), boo (blue), stow (store), moor (more) boom, broom, 'round (around), wow, dude, gram (gram cracker) , feesh (fish) as well as attempts to mimic pretty much anything we ask him to.

Between his signing and speech he can pretty much get across what ever he needs, who can ask for more that that !!!!!!!! :o)

Cricket... cricket

Were you aware that the word cricket is funny ?? Apparent it is - at least to my kid it is. He's kinda odd anyways ;o)

Also , as of the 4th Sebastian is able to "play" a kazoo, sort of, lol. He does short humming blasts which is a HUGE thing for him. He loves the vibration of it and it gets him laughing before he can do much else. It goes .. hum.. giggle giggle.. hum... giggle giggle... hum... giggle giggle you get the picture.

Last night little bugger pulled his trach mask off and scored himself a little plug , nothing too major , solved it with saline and two suction catheter , no late night trach changes - woohoo ! He was sooo mad with me bothering him in his sleep, woooh boy did he fight me. Then he spent most of the night coughing up and clearing out lingering goobers so little sleep was had by momma.

All day today I had a ranging headache so I was looking forward to bedtime about 45 minutes after he woke up but again bedtime was a struggle of sorts. He finally gave up after two hours and a grape fast melt Tylenol later. I think after all his grumping and grouching he gave himself a bit of a headache , at least that is what he told me when I asked him what was wrong(Signed head+hurt) and about 20 minutes after his meds his heart rate dropped and he finally fell asleep.

It seems Sebastian has figured out how to bite into food as opposed to shoving the whole thing in his mouth at once. Can we say sensory issue ? lol I had some Mickey D fries and as always he asked for some . I handed him half of one and laid the other half down , reminding him to just put one piece in his mouth at a time. He did great then took a small fry out of the container on his own and bit it in half, again eating both properly ! I know it was bad but he probably eat 1/4 of my fries but I was so happy he was eating 'normally' I didn't care.

So all in all a rather normal day. :o)

School days

Today was Sebastian's third day of "school" , which is really a playgroup at a local special needs daycare, but don't tell him the difference. He loves going to school and the last two times threw a fit when it was time to leave, he wants to stay and play more... lol.

Also , Sebastian has been battling some illnesses lately , a long lasting cold of some sort and a fungal infection around his stoma due to the litany of antibiotics he was off and on for 2 months fighting off a nasty round of tracheitis. Don't quote me here folks but I think we may in the clear - for the most part. Under the flanges is still rather irritated looking but the smell is mostly nonexistent and the rest of his neck look great. This is excellent news because now we can get the ball rolling again for decannulation ! Woohoo !

Now I have to call the ENT to set up a date for surgery to remove his tonsils and adenoids, which we belive , why he is oxygen dependent while asleep - those enlarged adenoids. After he recovers there will be a bronching and maybe a sleep study depending on how his sats go while sleep with his cap on.

Last year we had a semi-epic battling trying to remove some really nasty chunks of granulation tissue (scar tissue) in a series of 10 bronching , equaling out to 1 a month for most a of year. Since he has went from last December without a bronch I am a wee bit concerned it may have grown back despite the Dr. repeated use of Mitomycin to heed the cells quick division and growth. Since he has stayed nice and pink during accidental decans and planned changed I think everything is status quo but still I am concerned for yet another hurtle to be placed in the way of getting this tube outta the kid's neck.

I've gotten to the point of "oh, well" with it - if it has to stay so be it , if we can get rid of it then -strike up the band !!! ... Just not the Doddlebops ... please !

First Post

Welcome everyone to the new site of Sebastian's Journey , a blog I began at the March of Dimes website back when Sebastian was still in the NICU. After a lot of thinking and some mild frustration with the MOD site I have decided to switch sites due to the flexibility it offers.

It has been months ( I have been a negletful blogger ) since I have last posted and oh my how this kid has changed but due to late hour I will have to leave you all hanging until tomorrow evening .