Soooo today was the BIG DAY! The day the trach is coming out.... urrrrrrrrrrrrrrrrrrrrch......DETOUR! Of course.... absolutely ..... we love to take the scenic route...right? Ummm, not so much, lol! We got all geared up today for our visit with Dr. Beck at 2:00 pm the trach was coming out. We get to the office, they call us back and we get to meet with Amy, Dr. Becks assistant. LOVE HER! She has a great disposition with Alex and they joke back and forth constantly....she just has an amazing way with him that I sooo appreciate as she lightens the mood and makes it not so stressful for him. Anything out of routine makes for a crazy day and more likely for Alexander to show himself. However.... we get in the room and she tells him she needs to either go down his nose or throat so that she can get a good look at his airway and see what's going on because Dr. Beck can't make a decision without seeing a good picture of the airway. He's telling her that he is fine, he has slept with the cap on his trach and it needs to come OUT, lol! She left to go and get the camera scope thing- a -ma -jiggy and he looks at me and says... "MOM.... put my shoe on please... it's about to get EXTREME UP IN HERE".... hahahahaha.... just his facial expression and words cracked me and Nick up! She walks back in with the scope and he starts singing..."Buffalo Soldier" by Bob Marley.... random much? He was in great spirits.... she tried to go in his throat but he kept gagging and she couldn't get a good read sooooooo DOWN THE NOSE she goes.... didn't look too comfortable... however only lasted like all of 10 seconds! The whole time she is doing this.... nick and I get to see on the monitor down his nose, throat and into where his vocal chords are. The area appears to be more swollen and the area that had originally been lasered seems to have had the scar tissue build back up... therefore lessening the opening of the airway. His left vocal chord is paralyzed and probably always will be, thus why his voice is not to it's normal self as it was before the incident. Dr. Beck came in and this is what was told to me:
1. You can take out the trach today.... however, should he get sick and the swelling in his throat increase... it may close his airway and you will have to have the trach reinserted. UMMMM NO THANK YOU!
2. You can wait weeks and think it over... see if swelling goes down with acid refulx meds. POSSIBLY...
3. Schedule surgery.... even if you go with option 2... surgery is inevitable at some point. OK... WHY PUT OFF TILL TOMORROW WHAT WE CAN ACCOMPLISH TODAY... BOOK EM DANO! :0)
Even if I wait a couple of weeks to see if the swelling goes down... at some point he will have to have the surgery... it is INEVITABLE. This surgery will more aggressive and intense, with Dr. Beck actually cutting out tissue... not just lasering... CUTTING... out the tissue to make a bigger airway. Side effects... may be hard to swallow thin liquids for awhile... no guzzling gatorade... water..tea and such. Voice may be a little weaker... or about the same and never improve.... this is a NO BRAINER... let's see... worry about voice or BREATHING, lol. I'll take breathing for $1,000 Alex Trebek, lol! Alex was getting a little anxious saying..."Don't listen to her... it's my body... I don't want surgery... let's just wait 3 weeks" My response... " I'm the parent... that's why", lol. We talked about it... and he is now on board with the plan as he himself just wants to do what we need to do as soon as possible to be back on the road to recovery! Honestly... why put it off? If we are going to need it... let's just get it over with. why wait 3 weeks for surgery...then add another 4-6 weeks on top of that till it comes out.... JUST DO IT and let's move on! soooooo, his next surgery is scheduled for June 2nd... if something opens up on May 26th we will slide in there... otherwise, June 2nd at Memorial. He may or may not stay overnight depending on his recovery and how he does with the surgery. I am very proud of him as he was still in high spirits when we left there and his attitude has been nothing but cracking jokes and calling people and telling them....now bare with me... I am just going verbatum as he talks on the phone in the backseat while I drive. "Hey.. you know how I went to the doctor to get my trach out today.... well guess what they did to me.... NOTHING.... THEY DID NOTHING... they left the damned trach in... the bitches" "So now I have another surgery on June 2nd, something about they have to cut some tissue out and make my airway bigger.... he said it was going to be very intense.... but I'll be getting Dilaudid... yeah baby...bring on the good drugs"... hahahahahahaha. HE IS A TRIP! So as it looks now... he will have the trach till atleast around July 14th.... give or take a week or two maybe before the 14th.
How do I feel about it? Sad I guess... for him. He was really looking forward to getting it out and being able to move past that part. A little more freedom.... while the trach is in... he really can't be out of my sight for any length of time, so wherever he goes... I go. We have come so far though in such a very short time that I can't let this get us down. I have to stay positive and focus on ALL OF THE AWESOME other things going on in our lives right now! I am fortunate enough that God is providing and I can stay out of work to take care of Alex for the time being..... We have a new house, a roof over our head, food on the table, electricity, cable..... Alex is walking more and more at therapy, getting great cognitive and occupational therapy as well.... first and foremost...ALEX MICHAEL ROSS IS ALIVE...THANK YOU GOD! There are waaaaaaaaaaaaaaay too many positives in our lives right now to let one little thing like this set us back. Just another bump in the road... another rollercoaster ride....WE GOT THIS....RIGHT? Look where we started.... look how far we have come.... GOD IS STILL RIGHT BESIDE ME.... Me, Alex and JC... we got this! All in God's time... not ours... all part of the great big plan! What I remind myself daily is that.... it could always be worse! I would much rather be going thru this than not to have Alex here with us at all! THANK YOU GOD FOR ONE MORE DAY WITH MY HANDSOME BOY!
I do ask that you keep us in your prayers as Chad will find out next week... hopefully... what they are going to do about him and his position as his dept has been depleted. Prayer warriors... Please pray that Chad is moved to another dept .... here in jacksonville and that his position is either lateral or a promotion. I guess beggars can't be choosers and any job is better than no job... BUT... since we are praying... let's just be specific, lol! Our finances just need to stay the same so that I am able to be here with Alex and do what needs to be done. I also need his transition to be here in Jacksonville as this is where Alex needs to be to continue his treatment. I have a peace about this and really feel that wherever they move him.. and yes I just don't think he will be laid off... I feel like this will be a step up for him to bigger and better things. I have felt this since he came home and told me about it... I have prayed and I just have a peace that is inexplainable... only by God :0) However... it is still scary for Chad as he is there in it everyday and it has to be stressful not knowing what is going to be when you know you have a family that you know you are the sole provider for.... but Chad just know boo.... WE GOT THIS! Prayer warriors.. you haven't let me down yet and your prayers have always been answered.... for this... I THANK YOU! You all play a very important part in Alex's recovery as well and we couldn't do it without ya!
Tomorrow I get some fun in the sun and relaxation with one of my old friends Miss Angie! I'm so excited... something to look forward to and relieve some stress from today's events. I was gong to do Alex's coming home party at end of June but now with the whole trach thing... I'm not so sure... I may want to wait until end of July! I want him to be able to enjoy it and LAST more than 30 minutes and I'm just not so sure he would with surgery two weeks prior to when i was planning it. I am also looking for ideas as to where to have it.... it needs to be a pretty large area so people can meet and greet him..... if any one has any ideas.... please do share! Party planners.... I need your help, lol!
It's 12:15am... need to get some shut eye.... mornings come all to quick for me!
PEACE~LOVE~N~THUMBS UP!
LISA
