TrachKids.org

Well everything is going good right now. Khalebs dad just got back form IRAQ and he spent the whole week with him. He was very excited every single day. I dropped him off at the hospital at 730 everyday until i got off from work. SO Khaleb was very busy. I have taken the CPR class last week. We are shooting for him to come home by the end of the month. I have to be checked off one more time for some things and then I will be fine. Just waiting for the company thats going to supply his equipment to contact me. I have done two trach changes. Very proficient with trach ties and suctioning. The only thing left is to learn how to put him on the ventilator. He only gets it at night. I am so glad that Khaleb doesnt need the trach to survive but he needs it to get better right now. He is doing great. Very helpful with his trach. He doesn't mess with it at all. I let him know that he needs it to be better and that one day he's going to get it out. I always tell him that when he gets out of the hospital we are going to Chuckie Cheese and the Aquarium. He can't wait........

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....