We made it up and out the door to his cat scan appt and headed back home... no day therapy this week as he is having too much difficulty with swallowing, mucus from trach and OCD with the rinsing and spitting in the cup. This all causing alot of anxiety... he would not benefit from going as he wouldn't be able to focus. I hate it... I hate him being out for 2 weeks straight... I feel like just when we are getting somewhere and taking steps forward... another surgery pops up and we take a couple steps back. Hoping that now this surgery is out of the way and hopefully he is doing better by Monday and he can begin his therapy and get back on track and actually go two weeks in a row without any appts... we shall see! Spoke to Amy at Dr. Becks office today as Alex has been on Amoxicillan since Wednesday and the mucus is still thick and green.. not good! So, she called in another med and he started that tonight along with mucinex and hopefully we can have it gone by the weekend as it is making him OCD with suctioning and cleaning his inner canula (a piece of the trach that comes out) and spitting. It's crazy to watch him... you would really think he is coo coo, lol. I am concerned that he is dehydrating and Amy said it sounds like he is ... he only pees like twice a day and the color of the urine is an amber color and very little. Like I said, his liquid intake has been next to nothing until tonight...thanks to my sweet friend Dean Wright! She stopped by and dropped off some thick-it stuff??? anywho.... you put it in liquids and it thickens it up... why I didn't know about this before today is beyond me, lol. I didn't know you could get it over the counter... heck i could have saved myself alot of hassle had I gotten this after surgery! Anywho... I put it in some sweet tea.. he drank about 5 sips and then he wanted to try it in water and he drank about 3 sips... not too much of either, but we are better than we were before we got the stuff. He isn't really eating now either... THAT kinda scares me. I had to make him eat chicken noodles from the soup at lunch and he didn't even eat half the can and then he only ate a small bit for dinner... couldn't get him to eat breakfast to save my life which is very unusual! Soooo tomorrow we go to the urologist and I will have them see if he is dehydrated and if so, maybe get him hooked up to an iv and get some fluids in his system. I have been checking his temperature... no temp, good sign... but hopefully get a good report tomorrow on base. Cat scan results... well, I won't know them until I touch base with Dr. Vitarbo... I assume.. no news is good news??? Our next appt is not until the 17th I think... gotta check my calendar, I can't keep all the appts straight! We do see the ENT on Thursday so I will know more of how his throat looks on the inside and pray we get the results we want... NO MORE SURGERIES PLEASE :0)
Please say a prayer for my father-in-laws fiance' Miss Jeanne Duffy and her family as her father passed away today and all of her family is in town. I pray they find peace and comfort in their wonderful memories and know that he is in a much better place and free of any pain. My condolences to all of them.... even though we aren't family yet by marriage.... we certainly have been family in my eyes since the day we met! I LOVE YA'LL!
I took the boys shopping today as Mr Alex and Mr Brooks have outgrown all their dress pants and shoes. We have a special fundraising dinner at Mortons Steakhouse tomorrow night with the Childrens Miracle Network and Jaguars. I think Reggie Nelson is going to be our waiter.... should be interesting with Alex, lol! The Jaguars are waiters for those who bought tickets to the event in an effort to raise money for CMN. If you go to Publix anytime soon and they ask you if you want to donate a dollar to Childrens Miracle Network... PLEASE DO SO and more if you can. This organization does ALOT behind the scenes for children and hospitals and they played a huge part in Alex's recovery with their donations of medical machines to Shands Peds ICU. Because of donations to CMN by people like you and me... Alex's doctor was able to monitor alex's vitals from his home while he was away from the hospital as CMN donated monitors for his home so that this was possible. ONE PHONE CALL CAN CHANGE YOUR LIFE for good and YOU just may need something as simple as this...that makes all the difference in the world. I never knew who they were or what they were about until this happened to me.... now I can't do enough to ever repay them for the huge part they played in his recovery. My son is now one of the Poster children if you will.... not what I was looking for... again.. would have much rathered him be a Poster child for Abercrombie, lol. But this whole journey has brought me to another side of life... one we all take for granted... one we all assume that hospitals provide all machines and devices for their staff... NOT TRUE! It's organizations like this... that help out tremendously and count on our donations here and there to be able to bless hospitals with these items. So.. when you are at Publix.. donate.. You even get a page of coupons for donating.. so you still get something for your money and hopefully YOU never get a phone call that changes your life in the drop of a hat. Stay tuned for great pics from tomorrow night to come... my boys, this includes Chad, lol... will be all decked out and looking sharp.. handsome as ever.. all dressed up with their momma for dinner!
Randi comes back tomorrow... YAY! Counting down the hours lol.
My birthday is Saturday and birthday week has officially begun!! Let the festivities begin!!
PEACE~LOVE~N~THUMBS UP!
Lisa
