What an exhausting day today! The doctor had changed Alex's ADHD meds from 20mg of Vyvanse to 5mg of Adderall because I felt like the 20mg was too much and making him coo coo! 20mg was the lowest dose of Vyvanse so we switched back to Adderall in the lowest form. WRONG IDEA! Aaaaaaaaaaaaaaaaah... it is extended release and apparently it released sometime last night and he was UNABLE to fall asleep until about 3:30am... OMG! We had to be up at 7:30am for chemistry teacher Mrs. Macy... soooooooo we did NOT get much sleep last night and had a full day today. Once Mrs. Macy left, I let him go back to sleep because I knew he couldn't have anything to eat or drink before his Botox procedure. I was a little sly how I handled that whole deal, lol. He woke up once requesting choc chip pancakes and I said you only have a little bit of time left to sleep you should take advantage of that... you can eat once it's time to get up :0) He had NO idea he was getting botox today as I didn't want to deal with all the anxiety this would cause nor the attitude and possiblity of Alexander resurfacing. Soooo, I waited till 10:50 when i knew we had to be out the door by 11:15 the latest and basically rushed him out the door. As we are walking out he says... "hey, I didn't get any breakfast"... I told him we would just get something after his doctor appt. He insisted on having something and I broke down and said "you really can't have anything until AFTER your doc appt.". That's when I got the LOOK, lol. "WHY can't I have anything until AFTER"? "It's just a normal appt right?"... "Ooops No, you are getting Botox today"... " WHAAAAAAAT... YOU LIED"... "YOU SAID IT WAS A DOC APPT".... my response... " IT IS A DOCTORS APPT"... hahahahahaha. Well you guessed it... ALEXANDER came out while we were at the hospital waiting in the little room to be taken back for the procedure. Naturally we had to be there 2 hours prior to the appt time of 2pm sooooooooooo for 2 hours we battled the " I want to go out into the hall and meet people"... "No Alex, you have to stay put in this room"... "Well, I have to poop then"... "Ok Alex, I will take you to the bathroom but if you don't poop, I am taking your phone for the rest of the day".... " OH MY GOD...you can't do that I have to poop".. "Well if you have to poop then you don't have to worry about your phone getting taken" .... "Well I have to pee then"... "Ok, here is the urinal, just turn around we will close the door and you can do it here"... "nevermind, I don't have to go anymore"... hahahahahaha
He tried everything you can imagine to get out of the room.. he couldn't do that so then he decided he wanted to lay on the bed... the bed that was way too high and I still can't lift anything and mom isn't strong enough to do by herself either so this was a task. You can't tell him he won't be comfortable... he has to see it to believe it! Soooo we go thru the whole rigamaroll of getting his hefty behind onto the uncomfortable table. "close the curtain and turn the light out... i want to sleep" ... "Alex, we aren't sitting in the dark.... just close your eyes"... " cover me with a blanket please"..... and so on and so on and it lasted about 10 minutes he wanted down back into his chair. ANXIETY was in full force. Every lady that entered the room or hall, he wanted to know their name and if they were going to be in the room with him when he got Botox. "If so, please tell them to put me under before you stick me with a needle". The anestheseologist came in and made his day when she told him she wasn't going to put an IV in him because the procedure only takes about 10 minutes so there was no need unless something changed during the procedure and he needed it.... so NO NEEDLES today. The nurse came back in and said she had found us a room with a TV that was available and she was going to put us back there until it was time for his procedure. THANK GOD! Cartoon Network saved us! It was finally time and they took us back to the holding area where he was reconnected with several nurses from the last time we were there 3 mos ago. THIS KID IS AMAZING! He remembered their names, their kids names.... their last names.... it was CRAZY! Heck I couldn't even remember! My little brain injury.... his brain is a sponge and never ceases to amaze me! The procedure lasted about 15 minutes and 30 minutes later we were back with him, his vitals were good and we were out the door. As we are wheeling him out... he is insisting he wants a 10 piece chicken strip meal from Hardees AND some Popeyes fried chicken lol! He did get Hardees and only ate 4 strips before his stomach was hurting and he gave up, lol.... I think it was the meds from the procedure not sitting well with the food. He hasn't really eaten much else today. The Botox usually takes about 3 days to kick in before we will really see a notice.... it worked great last time and he has really come far since the last go round so I am excited about what is to come!
I finally got the authorization from Tri Care for the trip to GA Emery Univeristy however... Emery had not received the authorization from Tri Care. I had to call Tri Care back today to give them a different fax number and it will take up to 48 hours before Emery will have it in posted in their system before I can make appt. I called Emery back JUST for grins and giggles to see what their scheduling was like in case it was going to be 6 weeks before I could get him an appt. She said no it should be fine. I proceeded to go into detail about Alex's case and she asked his age. GUESS WHAT.... Dr. John doesn't do pediatrics... OMG! Are you kidding me? All that I have been thru and for nothing???? I DON'T THINK SO! Soooo, I made yet another call to Dr. Becks office to speak to my precious AMY to see if there is anything she can do. Maybe fax Alex's records explain the complexity of what we need.... they are top notch doctors surely we can make an exception in Alex's case? I CANNOT GO THRU ANOTHER REFERRAL PROCESS LIKE THIS ONE! Precious Amy was going to make a phone call.... and was also going to have Dr. Beck make a call to Dr. John as he personally knows him.... THANK YOU GOD! I still don't know what the outcome of all this is going to be so PLEASE SAY A FEW PRAYERS THAT HE WILL TAKE OUR CASE for a second opinion! I just want to explore all of our options.... leaving no stone unturned. We will travel wherever we have to travel and do whatever we gotta do to get this dang trach out!
Big day tomorrow... BALDWIN HOMECOMING....Brooks is on the homecoming court so he has a parade tomorrow at 1pm riding on a float and then the game tomorrow night. We got him a new suit, shirt, tie, socks.... looking pretty dang handsome... I can't wait! He and Brittany both made the homecoming court and will be walking on the field together to see who gets crowned.... EXCITING :0) You know I will have pics to share!! Good Luck Brit and Boo!!
Wishing you all a safe and happy weekend!! Throw some prayers our way....need this trach business taken care of asap!
PEACE~LOVE~N~THUMBS UP!
Lisa
