I HAVE A THREE YEAR OLD LITTLE BOT NAMED KHALEB. UP UNTIL TWO MONTHS AHO KHALEB WAS THE PERFECT LITTLE BOY. HE HAS MOEBIUS SYNDROME WHICH IS A RARE SYNDROME WHERE HE CANT SMILE. HE IS THE CUTEST THING THOUGH. ON APRIL 1, 2008, I GOT A CALL FROM KHALEBS DAYCARE. I KNEW SOMETHING WAS WRONG BECAUSE THE DAYCARE ONLY CALLS WHEN SOMETHING IS WRONG. THE DAYCARE PROVIDER WAS YELLING HYSTERICALLY TELLING ME TO COME TO THE SCHOOL RIGHT AWAY BECAUSE KHALEB HAD CHOKED AND WAS NOT BREATHING. OMG THAT SEEMED LIKE THE LONGEST DRIVE OF MY LIFE. SO I WENT TO THE HOSPITAL TO SEE HIM AND I WAS CRYING SO MUCH. I FINALLY GOT TO SEE HMI AND HE WAS LYING THERE WITH A TUBE DOWN HIS THROAT. THEY SAID THAT HE WAS NOT BREATHING SO THEY HAD TO PUT A BREATHING TUBE IN HIM. THEY COULD NOT TAKE TAKE OF HIM THERE SO THEY SENT HIM TO CHKD. THE BEST HOSPITAL IN VA. I STAYED THERE WITH HIM AND THEN I GOT A CHANCE TO GO SEE HIM.
THEY TOLD ME THAT THEY TRIED TO TAKE THE TUBE OUT BUT HE WAS RESPONDING TO IT WELL AND WHEN THEY TRIED TO PUT IT BACK IN, HIS THROAT WAS OO SWOLLEN AND THEY HAD TO FIND HIM A WAY TO BREATH QUICK. SO THEY TOLD ME THAT HE WOULD HAVE TO HAVE A TRACHEOSTOMY. WHICH WAS CRAZY. I KNEW THIS GIRL IN SCHOOL WITH ONE. SO THEY DID THAT AND I SAW HIM AND THEN I KISSED HIME AND TOLD THE NURSES THAT I WOULD BE BACK. SO I WENT HOME AND CAME BACK EARLY THAT MORNING. I WOKE UP PRAYING THAT THIS WAS A BAD DREAM BUT IT WASN'T. KHALEB WAS NOT IN HIS BED.
SO SINCE THEN HE HAD TWO SEIZURES WITHIN THE FIRST TWO WEEKS BUT NONE AFTER THAT. HE IS NOT IN THE TCU (TRANSITIONAL CARE UNIT). THE STEP YOU TAKE BEFORE GOING HOME. HE'S SO SPECIAL TO ME. MY ONLY CHILD AND I WOULD GIVE THE WORLD FOR HIM. IT'S JUNE 5, 2008 AND KHALEB HAS BEEN FINE. HE HAS TAKEN OUT HIS TRACH ONCE AND HIS STATS WERE FINE. I SPOKE WITH THE DOCTORS AND HE WILL BE COMING HOME WITHIN THE NEXT COUPL WEEKS.
HE HAS TO HAVE TO TRACH TO GET BETTER BUT HES NOT DEPENDENT ON IT. SO WHENEVER HE GETS IT OUT I WILL KNOW THAT WILL BE A JOYOUS DAY.
I AM A SGT IN THE ARMY. HAVE BEEN IN FOR 5 YEARS AND HAVE NEVER MET ANYONE IN MY SITUATION. KHALEBS FATHER IS ALSO ACTIVE DUTY ARMY AND HES SUPPORTIVE .I AM BLESSED TO HAVE A SUPPORTING UNIT. SOMEDAYS I WONDER IF EVERYTHING THAT HAPPENED TO KHALEB IS MY FAULT FROM SOMETHING THAT IVE DONE IN MY LIFE BUT I LEARN TO TRUST GOD AND HAVE FAITH....
Comments
skyler
hi,
to any and all parents of children with trachs, hats off to you, please i need your help and opinions, my son skyler has goldenhars syndrome which affects one side of the body, he has cleft lip palate, missing a eye/ear and has spine issues, skyler will need many surgeries, and is a very hard intubation, the doctors want to trach him for this reason which breaks my heart, skyler has no respitory issues, and i am afraid of what it would do to him, so i need all your expert opinions, since you have all been through this of what i should do? god bless all of you and your children, mary please email me at marykdon@invisimax.com or marykdon@hotmail.com, please any suggestions are welcome good and bad,
Scary stuff
Sounds like you've had a really rough ride. Please don't think that this is anything to do with punishment for something you did or didn't do in your life. Bad things can happen to anyone, regardless of whether they deserved it or not. It feels like punishment, but it's simple bad luck. Neither God, nor fate had anything to do with it.
I hope Khaleb recovers quickly and that he doesn't need the trach for long.
From:
Kate - mother to Laird Angus, the 12 fingered knight, and Lady Juliet of the flowing tresses, who is tall and willowy.