Momma Always Said...

If you have nothin nice to say, don't say nothin at all.  Not that I haven't, and I feel guilty for it...I have found XL Big Girl Panties and I have put them on. 

I guess you could say Graham has been maintaining his crappy state. Which I guess is good.  He does have a pretty bad sinus infection along with a clogged perio-whatever (Dr. Daddy - my Dad is our fabulous dentist- knows the big word), this has caused the right side of his face to swell pretty bad.  Oddly enough, now his right side of his face looks like it has been for the past 5 years, and not like his new, or should I say old pre transplant, face.

He has just finished up his 2 days of Photopheresis and our Christmas festivities will start soon. Hopefully this week turns out to be good.

No Reserve

Now typically when we say the words "no reserve" when we describe Graham, we are referring to his lack of comedic control.  The man LOVES to joke around and cause laughter, whether everyone laughs or he laughs all by himself.



But not now.  We went to Clinic on Wednesday and saw Dr. Rosenblatt.  All lab work and x-rays came out looking normal, which is good but doesn't explain why he crashed so dramatically last week.  Dr. Rosenblatt had an answer for this.  Graham has "no reserve;"  meaning, if he gets a sniffle, added stress, cough, he has nothing in his body that will help compensate and fight whatever is happening.  As scary as this is, it is nice to have an answer and understand what is going on when he feels like this and that hopefully, he will feel better soon.


As for transplant talk...Dr. Rosenblatt spoke with Dr. Waite (surgeon at UT Southwestern) that morning.  He gave him facts only.  He is trying to keep emotion out of it all.  As hard as he is fighting for Graham, he is also so afraid to hurt or kill him.  It is so obvious that he loves Graham and his family.  That is so rare in the medical field that we live in and it always comforts us knowing he has Graham's BEST interest at heart.  Dr. Waite will be looking over all of Graham's files.  We don't know when we'll get an answer.  My mind is already telling me the answer, but my heart wants Graham to have a fighting chance.


Wednesday was also Dr. Rosenblatt's birthday.  We gave him a Fight for Graham shirt and he loved it.  He said he'll take a picture for us with him wearing it - can't wait!


Graham is currently back in the state that he was a week and a half ago.  He is struggling to get up and move around, even just sitting up in bed is a struggle.  We had a busy day on Saturday and fingers crossed that he is just exhausted and that a day or 2 of good rest will help.

Looking Up

Friday brought so much fear.  Was he going to wake up, was he going to be the same or worse, were we going to call the hospital, was his fight going to be completely gone?

We went slow.  I took a 1/2 day in attempt to show some hope that he'd be better.  If needed, I'd take the rest of the day.  We started IV's and I made him take breathing treatments (he hadn't been) in hopes they might help a little.  The big test was to get him to Quest Diagnostics for lab work.  Would he be able to get up and moved to the car?  But big surprise...he actually felt better!  Maybe a good drug induced sleep actually did him some good?  He got up and walked to the car with only about a 3 minute breathing recovery, he was able to get his blood drawn with no problem, and able to get back into the house with again, no problem.  I felt so much better.  Still numb, but a  pebble was lifted off my chest.  I made sure he was set for the day and threatened him to call if he needed ANYTHING and headed to work. HE WAS FINE and made it through the day.  He still was not eating much so I made a plan to make one of his favorite meals.  Dinner time, Graham surprised us and walked into the living room.  I didn't let him see, but I cried.  He ate, not his normal amount, but what a normal human being should eat, watched TV with us, then walked back to bed. 

Saturday brought even more baby steps forward.  By afternoon, he was even wanting to go watch Longview Lobos play Lake Ridge.  Not a good idea, he needed to continue to let his body heal.  So he walked around listening to it.  His poor Lobos lost, but Mansfield now has 2 teams advancing.  This excites him too.  Me, might could care less :/  but he's a happy camper.  He ate dinner again, 1 meal is better than none; but the goal for today is to make him eat 2.   And he is able to move to the living room and bathroom without much anxiety.  He is back to 3L of O2 (he had been on 5) and is wanting to clean up himself today.

I no longer fear that he won't make it to Christmas.  I do however want answers about a 2nd transplant.  This is not the life he ever imagined living and his fight will eventually end.  He goes to the doctor on Wednesday and I plan to have my serious face on.  I think I have one :)

Scared

Graham has reached a new low.  He is doing exactly what he NEVER wanted.  He is suffering.  He is suffocating.  He is depressed.  He is losing his fight.

I am numb.  I am scared.  I have no words.

Fragile

After the bloodbath from Graham's nose, our quick return to the ER and a hospital stay, Graham was able to come home Tuesday.  Everything came back negative; no pneumonia, no flu, and nothing grew out of his many cultures.  But since Dr. Garcha has absolutely no clue what he is doing (this is the Dr. that asked, "How do you want to die?") he kept running test after test, unable to find anything that stuck out.  Even the spot, former nipple hopeful, had not grown. So, with a fresh new batch of antibiotics, they sent him packing. 

His return, though exciting, did not go well. Wednesday he struggled to get out of bed.  Every time he did, he was gasping for air and having panic attacks.  Thursday was even worse.  I got a text that he was unable to move, he was thirsty, hungry, had to go to the bathroom and could not muster the mental strength to do any of it.  He was so afraid to move and that he'd have another attack with no one at home, and he wouldn't make it.  He was crying, I was crying, so I went home.  We were able to take care of immediate needs, but the rest of the day was still horrible.

If this continued Friday, we would call the Dr.  The fear is that it was over.  They would make him "comfortable" and we'd pray he'd make it until Christmas.