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. 

We're Back!!!

Stress, in anybody, always causes a breakdown of your body.  And if you are already sick, it will only cause you to breakdown more.  As much as I love the Holidays, it causes stress too - even if you are not doing anything (whether capable, or not - I don't know if much has changed in that category).  By Friday, Graham was not improving at all and he began to get worried with the weekend approaching and the what if he kept declining and couldn't see his doctor. I called in and the doctor suggested coming into the ER and have him checked out. 

The process was quick!  And we were back into a room within minutes.  After a quick talk with the parade of doctors, he was admitted.  About this time, the Charge Nurse from his 2nd home floor called to check on him after discharge.  I told her not to hold her breath, we'd be back up within an hour. 

After blood tests, flu test, and x-rays...no clue what is going on with him.  He came in with shortness of breath, wheezing and pain in his lung while he did his CPT - all signs that pointed to pneumonia, but it still has not been identified as to what is going on with him.  Maybe his cultures will come back explaining more.  As for now, he's camped out on floor 10 again, and feeling crummy.  I don't believe this weather is helping...but we are trying to make the best of it!

We be stylin' with our new fashion accessory

Very Thankful

***This was written on Thanksgiving, I'm not too much of a procrastinator, just didn't know if I wanted to post***

There are so many things to be Thankful for, almost too many to list, but I can try.  First of all God, who has given me and my family so much  Second, Graham and Jordan who are the loves of my life.  For my family and friends who give us more love and support than we deserve.  And the love of strangers - so many that know us only through our family and friends, yet they also give us love and support.

I am also very thankful for stress relievers: movies, clean house, wine, dog and cat, lawn guys, the Chive, Criminal Case and Candy Crush, creating things, wine, windows open in the week of fall, vodka in the spring/summer, whiskey in the fall/winter, Jordan playing soccer, a clean desk, Holidays, my awesome neighborhood, cooking, clean house and wine, my church service and how they entertain and teach, and so, so, so much more.

Happy Thanksgiving to all!

The Great Nose Bleed of '15

Get ready...it's lengthy:

Graham keeps calling it "just a nose bleed" and I'm glad he doesn't remember much of the trauma behind it all.  On Friday, Graham went in to have blood work to check his levels.  His INR (Coumadin levels - tells the thinness of his blood) were extremely high...5, they want it around 1.  So Graham knew that until his number was low, be careful or he'll bleed. 

Saturday morning, as we are getting ready for Jordy's tournament, Graham wakes up with a nosebleed (kind of looked like a faucet was turned on, I've never seen that thinness of blood).  Kleenex was not working, so we moved on to Tampons.  The look on Graham's face after I suggested this was priceless; but he did it anyway.  It would not stop.  Ladies, you'll understand this...he was bleeding through slim tampons within a minute, regular tampons within 3 minutes, and super within 5-6 minutes.  We went ahead and went to Jordy's game - she only had one and it was an 8 o'clock game.  It was surely going to stop, right?  Graham had to stay in the car.  Sting, Jordan's team, shut out the other team and once we got back to the car, Graham was starting to panic not knowing what to do.  He called the On Call service and they told him to put ice on his nose and continue packing it with a tampon - and eat spinach (um, he can't eat anything). 

An hour later, still gushing, he called again.  After waiting an hour with no return call, we went in to the Baylor Emergency Care in Mansfield (I highly DO NOT recommend the weekend Dr).  After 3 hours of constant bleeding, they became too afraid to work on him and called for an ambulance. I asked if I could take him, and they denied me..."standard procedure, against the rules, BS, BS, BS."  So after another HOUR of waiting, the ambulance finally arrived (emergency facility my ass).  Of 37 years of bad health, this was Graham's first ambulance ride.  Not as exciting as he imagined.  He rode for 50 minutes on a hard board and his butt hurt.  Side effect of no meat on your bones.

Now, once we arrived, I had already been tested the whole day with my fear of blood.  I was weak, in pain, and nauseous...BUT NO FAINTING!  We arrive at the check-in desk and then walks up a Care Flight Pilot holding a Styrofoam cup with a Biohazard Bag stinking out.  I accidently said out loud, "Please don't be a finger" and Graham's ENT took it upon himself to have fun with me.  He proceeded to ask what was in the cup and the pilot responded, "Oh I got a thumb!"  I had to put my head on the counter and inform everyone that I would be fine, I wake up within a minute and DO NOT Code Purple me!!!  They need to imagine that I was wearing a DNR sticker on my chest.  Luckily, there was no passing out.

Once we got into an ER room, all hell broke lose.  Four people began working on him at once, complaining that Mansfield couldn't do anything to help stop this.  One was applying oxygen, one was giving him IV pain medicine, the doctor was working on his nose, and one was just flat out in the way.  Never figured out that guy and why he was always there.  By this point it was estimated Graham had lost over 2 pints of blood.  His Hemoglobin level had dropped from 12 to 10 from this morning.  His INR was slowly declining, but not fast enough.  In Mansfield it was 4 and by Dallas it was 3.4.  Graham began choking on blood clots and he was wearing about 1 cup of blood on his clothing.  There was some fear of using a "Rhino Rocket" due to his INR and breathing, but the pros now out weighed the cons.  A Rhino Rocket is a 7 1/2 inch deflated tampon.  Once COMPLETELY shoved up his nose, they inflate it.  It is saturated in medicine and complete fills up the nasal cavity.  During the shoving, my poor husband was in pure pain.  Gagging on blood, pain from the rocket, bleeding out his other nostril and spitting out clots.  But once done, the pain meds took effect and the bleeding stopped.  You could FINALLY, after 13 hours of misery, see Graham relax. 

Just on the other hallway, my Cousin Doug, was in another room with a broken back.  He fell something around 15 feet from a tree while hunting.  I took this time to go and see him.  Luckily, only a couple of vertebrae's were chipped.  Yes, this is horrible and painful, but it could be SO much worse.  Spinal cord was safe, they were not completely broken, and ligaments looked good, and with time and physical therapy, he should be back to normal.  Kim, you were a rock star!

Dr. Rosenblatt left a date with his wife to pay Graham a visit.  He admitted Graham into hospital to observe him and let him know he'll be here until Monday.  He also told Graham to stop picking his nose :)  Finally, we went to our 2nd home on the 10th floor around 9:30.  It had been a day, and it was going to be a long night.  Graham was in pain, couldn't breathe, and because of breathing O2 through his mouth all day, his throat was beginning to hurt.  But the day was done. 

Sunday:  though there was no bleeding, was no better.  His whole head throbbed, he couldn't speak, and couldn't eat.  Swallowing his pills began to be a chore.  Where he typically can swallow a handful and be done, he could only take a few at a time because he couldn't breathe. 

Monday:  he went down to the IR lab, you know, the place he almost died, to have yet another "simple procedure."  They took a scope and tool up through his groin access and repaired (like a patch) several spots on an arterial vein in his nose.  Turns out, he had damage to a big vein in his nose.  This with a combination of his high INR is what caused all this mess.  His hemoglobin level had now dropped to 7.4 and he was in need of a blood transfusion.  As I lay next to the blood bag, our dear child decided to think this is cool and DESCRIBE EVERYTHING.  I came very close, but still no passing out.  After this, they removed the Rhino Rocket and it was instant - he felt so much better.  They still needed to keep him and we fought and won, he would go home Tuesday not Wednesday.

Tuesday:  we are still waiting to be transferred down to Photopheresis, but they have already put in the discharge order.  He's coming home.

Thank you for the thoughts and prayers.  They have been answered.  My Grandmother is now at peace with Our Lord, Doug is now home and resting, and Graham will be home today.

***The thought just occurred to me: What if the vein did not fall and did not come through his nose?  He would have been bleeding internally and it might not have been caught until it was too late.  Thank you God for blessings in weird disguises.

My poor baby :(

Life Sucks Right Now

To say life sucks right now is an understatement.  My side of the family is having tragedy after tragedy and we need some thoughts and prayers.  I will write about the whole debacle with Graham later, because it's an ordeal I don't want to forget and need in writing.

Graham is back in the hospital.  He had an arterial vein bust and lost several pints of blood.  He went in to surgery this morning to fix it and will have a blood transfusion later.  If all goes well, he should be home tomorrow.

Also in the hospital (and was 2 doors down from us in the ER) is my cousin.  He fell out of a tree while hunting and has broken his back in several places.  Luckily it was just his vertebrae and with time and therapy he'll be fine.  But the pain is tremendous.

My Grandmother had a stroke last Friday and this morning my Daddy is having to do the unthinkable and pull the plug.  She'll be on pain meds and fluids until she passes.

A dear friend of the family has just received horrible news and their family needs prayers.

With all this going on, my strength is being tested.  I have faith it will all go as planned, but the journey still sucks.

Prayers are Needed...again

Not wanting to post to FB because I know so much is going on with so many of our close family and friends. Graham is on his way back to the hospital, via ambulance, due to a non-stop, faucet like, nose bleed. We have been in an Emergency Care facility most of the afternoon and they can no longer care for him. He has lost well over a pint of blood and is cold and weak. Praying they can quickly stop this at Baylor Dallas.

Tournament Season

One of Graham's favorite things in this world is watching Jordan play soccer.  And now that it's tournament season, Graham is bound and determined to make it to as many games as possible.  This is much easier said than done. 

This past weekend was Jordy's first travel tournament.  We packed the ol' car to the brim with a wheelchair, oxygen (large and portable), soccer gear, soccer mom bags, carts, and don't forget the clothes; and headed to Norman, OK.  It always amazes me how much my car is like a clown car, so much can fit in it! 

Even though it was COLD and RAINY and at times down right miserable, J's team came home with 2nd place medals.  Graham was able to tough it out through 3 of the games.  He did have to rest between games and spent a lot of time in the car trying to regain some energy, but he got to go and was happy.  He didn't make the last game, he was beginning to feel really bad; plus it was cold, windy and raining (he didn't need to be out there anyways). 

The Championship game was miserable.  I got to sit with the girls on their sidelines and attempt to keep them warm while they "sat the bench."  We kept ourselves entertained - of course while watching the game, and we tried unsuccessfully to keep warm.  It was all worth it though, the smiles on their faces were awesome.

The trip did take a toll on Graham.  We were worried that he'd go back into the hospital.  But by the end of the day on Monday, he felt as if he were just warn out not "sick."  Then by Wednesday evening, he was finally feeling like normal crap not crappy crap.

Next tournament is this weekend...and the weather is suppose to be just as bad...ugh. 



It's all Unicorns and Hearts



Went to Norman and OU still sucks!!!

Sadie had fun too :)

2nd place fabulousness

For Better or For Worse

Exactly 8 years ago tonight I got to marry the man of my dreams.  I know it sounds funny, but the night I met Graham, I was hooked.  I knew he was something fabulous and I knew he would mean something to me.  What exactly, I didn't know.  But now I do...

Graham is my best friend, my go to person, the one I count on to cheer me up and to hear me vent and to tell me he's proud of me and to definitely tell me when I'm messing up. 

He knows the real me and still loves me. 

Graham is my backbone when I can't find the strength to do what I need to do.  I would definitely not be the person I am today without him.  He has taught me that I am something great and I am someone worth a voice.  He has encouraged me through some really difficult times and has been there every time I have failed or succeeded.

He is the Father of our beautiful daughter.  And he isn't just a Father, he's a Daddy.  One who gets out there and plays with his kid and her friends.  Not only does he do this for his own child; he comes to school and is there for my students' who may not have this kind of interaction.  Or those who do but just love to play. 

I have always been an optimistic person; but not until I met Graham was I someone who fought to make the positive outcome I wanted, happen.  Graham is the strongest, most optimistic, biggest hard head, stubborn, fighter I know.  He has almost never given up and taken no for an answer.  As miserable as his life is right now, he wants to be here and is continuing to fight to make it. 

Thank you God for giving me him.  Thank you for giving us support and comfort.  Many times I feel as if we don't deserve it and I don't understand it, but I am so grateful for it.  Please continue to be with us.

Yep - it's a Twinkie and Hostess Cupcake Groom's Cake

#KCCO

The Chive is a website or mobile app that houses most of the funny, motivational, and random crap from the internet.  Graham has followed it religiously for quite sometime.  In the beginning, I would grumble every time he would make me stop what I was doing just to try and make me laugh or cry depending on the subject of the picture(s) he wanted to show me.  And the videos, oh the videos, ugh - they took up my time I could be reading!  Then he introduced me to Cat Saturday, Animals That Don't Suck, and Sooo....You Got Wasted (all of these are categories they put pictures in).  I might have then downloaded the app onto my phone.  And then I might have secretly began to look at the Chive ever so often (NOT every 10 minutes like my dear husband).  He soon busted me and then began his stupid "I told you so" song and dance of how I'd like it.  But I did.

The Chive has been more than just a following for Graham to do.  He has spent most of the days of his life in bed (either at home or in a hospital); and we all know how 'great' daytime television is.  However, Graham does love him some Judge Judy and Judge Millian.  Since he doesn't read, he has spent WAY too many days bored out of his mind until the Chive came along.  Now, he spends less time bored and more time laughing his ass off or being reminded that there are other's out there that have it way worse than him.

The other day, while contemplating if he could work the nerve up to take a shower or not (things we take for granted and other's wish they could do), he was flipping through the "Chive Everywhere" section and came across a photo.  He stopped and actually said, "That looks like my daughter, weird."  and kept flipping through the photos.  He then went back to the picture and yelled, "THAT IS JORDAN!"  I don't know how or why she came to be on the Chive, but I do know that it put a smile on his face after a rough day.

Graham is still "Stable but Fragile."  He has good and bad days, good and bad hours, good and bad minutes.  He can't predict how he will feel and it frustrates him.  He is having horrible headaches often that cause his breathing to be shallow at times.  But he is still fighting and doing more and more each day - he drove for the first time on Saturday...scared the $&#! out of me at first, but he did it.  Getting in and out of his big truck took the breath out of him, so starting the truck was delayed, but again - he did it.  I'm so proud of him.

Picture from the Chive - Chive On

#FIGHTFORGRAHAM

Most people know, Graham and I are very stubborn when it comes to asking for anything.  And family and very close friends constantly ignore our pleas and help us anyways.  Because they know we are not strong and know we cannot do this without them.  Stacy is one of those.  She has constantly ignored our pleas and has given us so much.  Today one of her efforts shined through and was awesome.  I don't think I'll ever be able to thank her enough for what she did for us.  It was more than the shirts, it was seeing the love and support that we have felt throughout this horrible ordeal.  Thank you for everyone who purchased a shirt.  I hope you wear it proudly for Graham.  A simple request...please take a picture or selfie whenever you wear it and post it (please tag me) with the #FIGHTFORGRAHAM



Green = Transplant
Purple = Cystic Fibrosis

Not a Nipple Photobomb

I was really hoping that his nipple decided to make an appearance in his last x-ray; but no such luck.  Apparently the blur was a fungal infection and they will be treating him with Vorcorti....whatever.  The plan is to only treat him for a couple of months, the last time he was on it for a good stint of time, his skin cancer began appearing at a frightening rate.  He was seeing the doctor monthly removing at least 1/2 a dozen cancerous spots every time.  The hope is that 2 months is enough treatment to fight the fungal infection while not enough time to trigger whatever it is that makes the cancer angry.

It was apparent this weekend, however, that it was an infection in his lung.  Graham had big plans for Halloween, even wanting to dress up to hand out candy.  By Saturday morning, the want was no longer there.  He did make it around the block once with the Jordans (Jordy's close friend and neighbor is also named Jordan - I like to refer to them as "the Jordans") collecting candy and began handing candy out at the bottom of our driveway afterwards.  He loved seeing all our neighbors and friends and fought to stay out as long as he did.  Saturday, Jordan had 2 soccer games and the plan was to attend both.  It warmed our hearts to have so many people help up make it up and down the hill that her first game's field was surrounded by.  Because, without saying anything out loud, I was wondering how the crap I was going to do it.  My new little orange wagon looked pretty pathetic.  After the game, we went to lunch with the team.  I could tell in the car he would not make it long.  Not 15 minutes in, I wheeled him back to the car.  He felt horrible and as soon as we got home, he took his temperature and it was 100.???   It didn't matter.  For the regular Joe, a small fever is nothing to be too worried about.  Take some IB Profin or Tylenol and sleep it off.  But for a Transplant Patient like Graham, it's much like a small baby with a fever that won't break.  Any type of cold, infection, or rejection can make him crash fast (as we got to witness this summer); and there is not much lower he can go.  He stayed home and rested through the 2nd game and luckily his fever broke.

This whole ordeal knocked him out - it wasn't until today, 4 days later, that he is beginning to feel like normal crap not death crap again. 

Please be a Nipple

Graham and I went to see Dr. Rosenblatt on Tuesday or "clinic" as they call it.  The process of clinic, no matter when you schedule your time, is always an all day, draining event.  Check in - wait 30 minutes; blood draw, BP, weight and temperature - wait 30 minutes; x-ray - wait 30 minutes; lung functions - wait 30 minutes; go back to dr's office - weight 30 minutes.  AND he's not allowed to eat until they are sure his blood work has come back with his different levels (somewhere around 2 o'clock, and we might as well wait until we leave so he can get good food, not hospital food).  Graham loves food, this is hard for him.

News - it's not good, it's not bad.  It's news.  His lung functions (percentage of lung capacity he has), which he has kept a secret, are bad.  He does not want them shared, because as he says, it doesn't matter; he feels bad and a number doesn't put a "feeling" to it.  But I was shocked, saddened and broken watching him blow, blow, blow and almost collapse because he tried his hardest and nothing was left in him, all for him to get the number he got.  The poor respiratory therapist asked if he'd go a 4th time - luckily her head is still attached, she should've taken the "patient declines" answer the first time. :)

But what is good to take from all this, nothing has changed.  Not his weight, not his functions, not his blood work.  As bad as they are, they have not become worse.

Rosenblatt says Graham is "Stable but Fragile."  It seems all his treatments have and are working.  That if all goes well, he should be able to live like this for awhile, but not improve. When asked if there was a chance for improvement Rosenblatt responded, "I never say never.  But if I was a gambling man *cough which I am* I wouldn't bet on it.  Then again, it is you."  If he does improve, it won't be by much and he won't feel any different.  However, any negative happenings (a cold, infection, rejection slowly breaking him down again) will majorly effect him.  Minimally will put him back into the hospital...and I'm not thinking about the rest.

Graham's X-rays came back and there is a discrepancy in his lower left lung that was not there in his previous X-ray.  With him being on immune suppressants, this could be an infection (or my pessimistic mind says tumor/cancer)...but it could also be his nipple.  Now my maturity level actually dropped and shined at this moment.  Dr. Rosenblatt said the word nipple at least a couple of dozen times.  I giggled every time.  I'm pretty sure this is why he kept saying it.  No one is worried at this point, why worry if we don't know anything.  Graham will have a CT Scan tomorrow to determine if his nipple photo bombed his X-ray or if it is something scary.  I will be praying extra nipple prayers tonight.

Rosenblatt is still advocating Graham's 2nd transplant.  The surgeon at UT Southwestern (who apparently can trump Torres) is wanting to see all of Graham's X-Rays and CT Scans, before he makes a decision.  Rosenblatt will still look into Duke and now Houston is back on the table.  Once he learned that we have a lot of family and a good support system down in H-Town - he began reconsidering calling them.  It was good to hear that not only does he have Graham's health in mind, he also has our family's mental health in mind.

During all this exhausting clinic, it seems Graham's humor is finally coming back; he was on a roll and made us all roll our eyes and laugh all day.  To fulfill our hunger pains, we went to one of my old favorites when we use to live in Dallas, "Wild About Harry's."  If you've never been and want a great hotdog and the best homemade frozen custard - you need to go!

Magic Johnston

My first week back to work was a success.  Day 1 we learned a few things I could do to make single alone life better for Graham (have lunch ready and accessible, the remote more accessible, and a few other tasks most  - including myself - take for granted).  Once these were fixed, he became an independent champ!  By the end of the week, he was walking more than 10 steps without gasping for air (on oxygen), walking to and from the mailbox WITHOUT oxygen, walking in the backyard WITHOUT oxygen (now- these did make him gasp, but he lives!), and speaking for about 5 minutes before running out of breath.  Totally not the guy on life support 6 weeks ago.

Graham was feeling so good that he even texted "I'm bored" Friday afternoon.  He hasn't been "bored" in 2 months.  All he's felt is sick and tired.  This was such good news - I didn't even feel sorry for him!  Since he was bored and felt good enough, we went on a family outing today to the movies.  We walked (he rolled) around the mall - he loves to look and shop and not buy.... yep :/  you can take a moment to ponder that.  There are several things that I take the man stance on and he takes the woman stance - shopping is one of them.  Then we saw Hotel Transylvania - highly recommend by the way.  As we were leaving, his O2 ran out, though he was short of breath, he never panicked like before and his O2 sats were still good!  Still immediately began charging his concentrator though as soon as we got to the car.  Why press our luck?

As we left, he said, "You know, I would have NEVER been able to do this 2 weeks ago, not even last week.  I could've gone to the Taylor Swift Concert this week!"  It's crazy and unexpected as to how far he's come.  He's really hoping he can go back to work in a few weeks.  I was speaking to a student and his mom Friday afternoon and he said, "He's like Magic Johnston." Haha, yes he is.


***Disclaimer - though he has walked a few times without oxygen, he still desperately needs it.  All times he is without he is still struggling to breathe.  And it always ends with him gasping and needing a break.

Suck it CF!

HAPPY BIRTHDAY TO GRAHAM!!! 

Today, Graham is turning 37 years old and many in the medical field consider this "old" for a CF patient.  When Graham was born in 1978 his life expectancy was 7-10 years old.  Then came along a miracle drug, Tobi, and it sky rocketed the life expectancy to 30 for certain cases.  They were always weary about Graham's case, thinking he wouldn't make it to his Dirty Thirty's, but he defied the odds.

This is when he began crashing however, and CF finally turned his lungs into rocks.  He was blessed with a double lung transplant and the past 5 years (well, 4, he had a rough first year) have been awesome.  A month ago, we were convinced he wouldn't make it to his next birthday, but he did.  So suck it Cystic Fibrosis, he's made it to 37 and he'll make it to 40!

Happy Birthday to my best friend and soul mate!

Moving Mountains

Dr. Rosenblatt called us the other night.  He wanted us to know that he is Graham's biggest advocate and he will never give up on him.  He is completely baffled by Graham's current state and has no clue as to why he has crashed so quickly.  One doctor kept calling it this "aggressive rejection" but Rosenblatt has never said this.  He went on to tell us that Graham is the poster child for a successful lung transplant and what has happened over the past 3 months could have never been seen or predicted. 

UT Southwestern has denied Graham a 2nd transplant.  I knew why Rosenblatt was waiting so long to speak to Dr. Torres, I believe he knew that he'd deny him.  But it wasn't just for the nonsense of a resistant bacteria, UT Southwestern rarely gives 2nd Double Lung Transplants; this I can wrap my head around.

But again, Rosenblatt has not given up.  He plans of bugging and continuing to persuade Dr. Mason (Baylor Surgeon) to forget about his great statistics and to take a chance on Graham.  He will also be calling Duke, in North Carolina, which is one of the top hospitals in the nation, to plea Graham's case.  As much as it scares me to move, the chance for Graham to live is priceless and we wouldn't even blink an eye to get that chance.

Jordan and I had a conversation yesterday about prayer.  It went like this:
"Mommy, you know what I learned in Church?  That if we prayed hard enough, we could move a mountain."
"Oh really?"
"Yes, if we stood next to a mountain and we held hands and prayed really hard, the mountain would move."
"It's a figure of speech baby, that means it's not a real mountain but an event.  Do you know what that means?"
"I know, my Daddy is a mountain."
"You're right!  Do you remember a month ago when we had to tell you Daddy didn't have much longer?"
"Yes."
"Do you know that many, many people are thinking of and praying for Daddy?  Many individuals, groups and Churches."
"I pray for Daddy ever night.  Is that why he got better?"
"I believe so."
"We moved Daddy's Mountain."

And yes, I still remember every word, it touched me so deeply.  I write it so that I may never forget.

Home Again!

Graham is finally back home...again!  The Doctors are hopeful that he has hit bottom.  The hope is that the Photopheresis is doing it's job.  We were really praying for more, but glad that at least it appears to have stalled or slowed down Graham's rejection tremendously.  They hope (notice that I keep using HOPE because let's face it, they have no clue) this means Graham will not get any worse, or at least it will be a slow digression.  But it also means, he won't can't any better.

It's really hard to know what to feel.  I am VERY grateful that Graham is still alive and coherent.  But the life we have had for so long I believe is over.  No more getting up and going anywhere - not even in a wheelchair.  I haven't asked what Graham thinks of this new life, mainly because I already know and I don't want to hear it out of his mouth. 

Graham will continue with Photopheresis for this week and then move to every other week.  This is good news: for his anemia and it proves it is working.  He will also start Physical Therapy for his lungs (the correct term is Pulmonary Something...I think I went to a really good daydream at this point); this will help him begin to learn how to work with his new lung capacity.

We hope to get back to some normalcy too.  Have you ever heard of anyone looking forward to going to work?  Oh - this family definitely is!!!

Thank you so much for your continued thoughts and prayers!  Graham coming home and infection free is DEFINITELY a prayer (or a 100) answered.  And who knows, just maybe we can make this work awesomely.

Negative Cultures

Graham's bronchoscopy went well on Tuesday.  However, it was slightly nerve racking since his last bronch is what started the chain of events that ended with him in ICU.  They sucked A LOT of secretions out (snot...mucus...) and so far, the cultures of these secretions are negative!  So now that they do not need to treat him for any infections, they are starting him on 3 days of a high dose of steroids - not the buff kind :)  Steroids are another type of immune suppressant.  This is the same therapy they did with Graham's Acute Rejection.

Graham's anemia has been keeping him down and sleeping most of the day.  The Dr's wait until the last possible moment to see if he needs a blood transfusion or not.  Last night, there was another fear that he might need one.  His hemoglobin was at 7.3 - very close to the "we won't treat him" number for Photopheresis.  Luckily, his number rose by the evening and a transfusion was not needed.

Not that receiving blood is bad, for the Regular Joe that is; for a would be transplant patient, it's more complicating.  Anytime you receive blood or plasma (or a body part or two) you also receive the former owner's tissue and antibodies.  When you are up for a transplant, they try and match your antibodies with the donor antibodies so that the chances of immediate rejection are much lower.  The more antibodies you have, the harder it is to match up.

There is talk again of him going home next week (insert REALLY HAPPY face).  Criteria for him to go home: 1. He will need to do PFTs (see his lung functions) 2. 6 minute walk (ha...but he did take 6 consecutive steps today without gasping for air) 3. Make sure his cultures are still negative.  He should be off IVs on Monday - maybe this will make his homecoming a little bit easier this go round.

Hopefully at Rock Bottom

The condition Graham was admitted back into the hospital on Thursday was a little frightening.  We believed that it was going to get really ugly - and it still might, but it looks as if that has been pushed back a little.  This gives us room to relax a little.

With Rosenblatt out of town, Dr. Huang has taken over.  He informed us over the weekend that he has seen improvement in his lungs.  His CAT Scan and X-Rays show clearing and his lungs are sounding better.  Now, it means nothing since he feels worse, but it appears something is going right.  Dr. Huang explained to us that even though some patients get quick results, it is rare.  With Photopheresis, it takes awhile for your body to absorb the stronger white blood cells and recover from such an evasive treatment.  He will be doing another bronchoscopy on Graham tomorrow and doing more cultures.  The hope is they come back negative and he will then start heavy doses of steroids.  This will make his immune system much lower than it is now, but it is nothing like the "bomb" or "crash" of his immune system that they were discussing last week.  This has been put on the back burner for now - whew.

His shortness of breath may be due to his anemia.  All transplant patients are slightly anemic, it comes with the territory, but treatment is always determined how you feel, not necessarily how your hemoglobin numbers are.  Graham has been having blood draws everyday and with Photo, blood is always left behind in the machine.  Therefore, it is not a surprise that his blood levels and hemoglobin have dropped into such low numbers.  Some of the side effects, which if you've ever given blood you've felt, are headaches and shortness of breath.  They want to hold off on blood transfusions as much as possible since they are still hoping for a 2nd transplant (the more outside tissues in Graham, the harder it is on his immune system - I think :/ ) but if it gets bad enough, they will proceed.  Which they did on Friday evening.  They also took a blood gas on him.  Google it if you would like to know what that is.  I can't even write about it without passing out.

Not that this has anything to do with me, because it doesn't in the slightest; but I have been tested this weekend with blood.  They say the best way to get over a fear is to be immersed in whatever you are afraid of.  The claim is that fight or flight will eventually ease up and you will be cured.  However, the fear of blood has the reverse effect on the body than all the other fears.  Your body actually shuts down, not tense up.  One cannot fight or run away.  So we drop, become nauseous, can't eat, can't sleep because of mental reminders of what was witnessed, or faint.  Luckily I haven't fainted this go round, but the rest of it has happened.  Ugh - God's sense of humor is so weird.

Dr. Huang is hopeful Graham is now at the lowest he will get and that some improvement will come.  Fingers crossed! 

The Hail Mary

With the stress of being at home and constant IVs taken away, today is a little better.  Graham is still unable to move much, but he has been talking more and has eaten a little.  It's not that he didn't want to be at home, he just felt he had to do more.  And with me back at work, he became anxious and stressed.  Not a good combination.

During Photopheresis yesterday, Dr. Rosenblatt came and paid us a visit.  Either treatment is not working, or it is working too slow.  His rejection has obviously progressed in the past 2 weeks and it is not looking good.  So Rosenblatt is throwing a Hail Mary.  He wants to give Graham the strongest immune suppressant they have.  This will drastically suppress his immune system and the hope is that his body will no longer be fighting to get rid of his lungs.  The risks are huge however; if Graham still has an infection (which he most likely has) or gets an infection (which we have a 7 year old), it will take over his body and kill him.  But as Rosenblatt said, it is our last resort.  A dear friend wrote, "We may be at the "Hail Mary" shot, but there is a reason why the term exists."  If Rosenblatt is the star quarterback, Graham is the star receiver.  Both have fought these horrible odds before and both have won.

Dr. Rosenblatt will also be speaking again to Dr. Mason, the lung transplant surgeon at Baylor, to see if he will reconsider transplanting Graham.  He is the one that originally denied the retransplant because of vein access.  Now that it is known he has access through the groin area, maybe he'll ok it.  He will also be speaking with Dr. Torres at UT Southwestern.  He is the "Rosenblatt" over there.  The worry with him is that he didn't want to transplant Graham 5 years ago.  Luckily, Rosenblatt moved to Baylor and we have had the most wonderful and blessed 5 years because of it.

We will see.  We both still have faith, but the ulcers and stress until the good happens is hard. 

It's Getting Ugly

Since Saturday, Graham has been on a decline.  The day I went back to work, Graham began to tank.  I was hopeful it was because I was gone and he had to get up and move more than usual.  But that's not how it was.  Yesterday morning, he tried to sit up to take his meds and he became winded.  He didn't move for the remainder of the day.  Once I got home that evening, I helped him to the bathroom so he could use the restroom and take a bath.  Even though his oxygen was cranked up as high as it could go, he was gasping for air as if he just sprinted 5 miles.

He had to cancel his doctor's appointment today because getting up was not an option.  But I had to get him to the hospital - there was no way he could make it any longer at home.  We thought about calling an ambulance, but the hassle of being admitted through the ER is something that he did not need to go through.  So we improvised - if I had not been uncontrollably crying, I would have been laughing.  It took an hour, but we did it and we made it.

Dr. Rosenblatt wanted him to go ahead and do his Photopheresis treatment and then he is back to 10 Roberts.  As bad as this sucks, I feel some relief.  He will definitely receive better care and let's face it, being at home this week has been difficult.

Graham says he physically feels fine, and his O2 Sats are good on low amounts of oxygen; but his lungs are failing him.  His lung capacity is so low that rotating in bed is a beat down.  I am still hopeful, I still believe this is not the end of his/our story.  However, I do believe it will get really ugly before it begins to look up again.  All Graham can think of is that Jordan didn't say goodbye to him this morning.  Who knows why she didn't, this has been an everyday ritual for her.  I am going to let her play hooky again tomorrow.  To stay and be with her Daddy while he is still coherent. 

Stalemate?

Sometimes no news is not necessarily good news.  While Graham is not moving any steps backwards, it seems he is no longer moving forward to better health - stalemate.  He had 2 great breathing days last week; things actually started looking up.  On Thursday, he was moving around, out of the bedroom, and overall in a great mood!  He might have overworked himself because Friday, he was EXHAUSTED, but his breathing was still great.  Everything went back to "normal" on Saturday.  Horrible headaches, hard to move without being breathless, tired and no appetite.  We have never heard of the side effects of Photopheresis, maybe this (along with antibiotics) is what they are?

If this is our "new normal," great - I'll take this over dead ANYDAY!  And I won't complain (Graham might though).  However, there are all these great statistics for Photopheresis, why can't they happen for Graham?  He has completed 6 treatments in 2 weeks, we were hoping he would start to feel better.  He is done with his IV antibiotics on October 1st, fingers crossed he'll feel better soon after.

I went to my doctor today and as I was telling her about our past 2 months she made a comment that I have never heard before, "For every day you are down, it takes 2-3 days to recover."  Well, if he is "recovering" from the 16 days of hell he went through, then maybe this is normal for now, and things will finally start moving forward soon.  Well, if you do the math, 32-48 days from now.  But I'll still take it!

I go back to work tomorrow.  I have so many emotions running through me.  I am leaving Graham for the 1st day in 3 weeks.  I fully believe he is at a point that he'll be fine.  He knows he'll be fine, but I'm still nervous.  And on the other side...I am lucky enough to LOVE my job.  I miss all my friends at work and I MISS my students; I'm very excited to see them tomorrow.  It's as if it is my first day of school and all the back to school jitters are alive and well within me.  I'm sure I will supply many people of some unplanned comic relief tomorrow. Ugh.

Not much change

We have our routine down pat...as long as we have all of our supplies.  There are so many people out there who could really benefit some elementary math skills, I'll be happy to tutor them.  Question: If you send out 21 IV bags and each of the tubings is a single use only.  How many IV tubings should you have? Answer = 21; NOT 16.  But that's over with.

It is still difficult for Graham to do much on his own.  Not only is he very weak, but he runs out of breath doing everything (walking to and from the bathroom, talking, even eating - one of his favorite things to do).  So he just lays in bed, conserving his energy to talk and eat and occasionally go to the bathroom.  I still refuse to allow him to use a bedside urinal; the man has got to have some exercise!  The IVs are pretty constant (morning, noon and night); therefore it's scary for me to think of leaving him for work.  But I do have to go back sometime.  The plan is to work a couple of days next week.  I'll have him completely set up so that he'll be fine for 9 hours without me.  His last day of IVs is October 1st - and then I might get to go back permanently!!!  And even better, he might get to go back to work!  We really miss our work; he loves keeping busy and talking to others, I miss my students and my friends at work. 

Graham started his 5th Photopheresis treatment today.  He has been looking forward to this.  He really hasn't felt any different and he's really wanting this to work out.  They say some people feel the effects after 2 weeks.  This will be his 3rd, hopefully he starts to feel a little better.

Home

Friday was a beautiful day.  Just 2 weeks ago, Graham was dying.  His body stopped breathing and the fear of losing him was a reality, not a some day this will happen.  And here he is, defying odds like he always does and is coming home.  When I asked him if he thought he'd ever be doing this, he replied, "No, I never thought I would see home again." 



This is our front yard - very fitting for a Welcome Home for Graham.  Thank you Janie!!!

To better explain the sign, no, I'm not pregnant, Graham's donor lungs are from a very gracious woman who unfortunately did not need them anymore.

Home was not all rainbows and butterflies.  It was very difficult, almost questioning if this was the right move.  Graham was flustered and stressed with the commotion of his family and dog; this raised his heart rate and blood pressure which effects his breathing.  He tried to take everything on himself.  He was trying to do all his meds, IVs, and making his meals all alone.  I don't know if he was wanting to do this, to prove he could or he didn't trust me, believing I was inept of it all.  Pretty sure it was the latter.  To say he struggled and was frustrated was an understatement.  Saturday was so difficult, I didn't see this working out and neither us never able to return to work anytime soon. 

Come Sunday, I finally convinced him he can't do it all. If he wanted to make it to Jordan's game,  he had to allow me to help him and he had to just deal with it.  Needless to say, he caved and we made it to the game.  Getting outside was definitely good medicine for his psyche.  And by the end of the night, he was VERY tired, but in a much better place than the previous night.  We have made it into a routine already and I have this IV thing down.  Since it's Halloween season - maybe I should go find one of those nurse's outfits!  

Baby steps forward

AND HE HAS GROIN ACCESS!!!  This is great news; this is the factor that UT Southwestern put in place for their Tranplant Team to consider Graham for a 2nd transplant.  The lead surgeon was on the original transplant team, so he is familiar with Graham's case.  Plus, Barbara - Graham's Mom- made a great contact with some of the surgeons over there too.  Though this means nothing but another chance for discussion, it is still another chance.

Graham has a 99% chance of coming home today! After his Photopheresis treatment they will do blood work, and as long as everything looks good, my Babe is coming home!!!

Innocent until proven guilty...

So I might have jumped the "impeachment" gun on Dr. Rosenblatt.  The trial is still in session, so I'm not taking sides right now.  However, Dr. Rosenblatt finally graced Graham with his presence last night, and it was hopeful news he brought.

Apparently Dr. Rosenblatt has not taken NO as an answer.  His current mission in life (well, this week) is to convince the lead surgeon at Baylor, Dr. Mason, to go ahead and grant Graham a 2nd transplant.  Just this news alone was a huge weight off our shoulders.  But there is more; he has already spoken to a surgeon over a UT Southwestern about Graham's case and IF there is vascular access through Graham's groin, they will bring him up for discussion at their transplant meeting.  Graham went in for a sonogram this evening.  But wait, there is still more...Dr. Rosenblatt plans on calling Houston Methodist to discuss his case with them too.

Though we REALLY want the Photopheresis to work, transplant IS very scary; it is nice to know that if it doesn't, there is still a chance that he might live on. 

Please continue praying and sending positive vibes Graham's way; they are really working.  We are forever grateful for them.

Annnnddddd, if anyone knows ANYONE on any of these hospital medical boards...a kind word (or give me their number) always goes a long way :)

A Little Nervous

Graham has the potential of coming home on Friday!!!  We are so excited for a home coming, but nervous at how well he will do.  When I say nervous, I mean scared.  It's kind of like when you have your first child and you are able to take them home and then it's like, "Ummmmm, now what? What do I do?" 

I've started humming the Darth Vader Death March every time the doctor or nurse practitioner walks into the room.  They never have anything good to say, and it all revolves around Graham's decline or death.  Have they not been witnessing the odds he has beaten in just the past 2 weeks?!?!?!?!  But Dr. G actually had ok news today - the x-ray of his lungs showed that the infection is clearing up.  That means the antibiotics are working!  Now, it will never be all gone, because apparently the infection he has is resistant to all meds, but at least it is clearing a little.

He has also been feeling the side effects of "hypoxia;" this is when your body is deprived of a certain amount of oxygen.  He has PLENTY of O2, but since he has been on such a high liter of O2, he has a fear of being without it.  He is suffering from pressure headaches, tight chested anxiety, and will all of a sudden begin gasping for air.  His O2 sats say he's fine, therefore it is all mental.  Some people get over it (typically mountain climbers), some don't (typically pilots - good luck JT).  I believe Graham is strong enough to get over this fear.  It comes and goes and it is not very consistent - I know he can do it.

He is also still "junkie" in his lungs.  The doctor is actually putting him back on hypertonic saline.  This brings back sooooo many memories.  This was the "miracle drug" of the 2000s for Cystic Fibrosis patients.  An Australian doctor figured out his beach bum CF patients were doing a lot better than his regular Joe CF patients and he found that it was the breeze coming off the ocean salt water.  So, enter hypertonic "beach air" saline.  This should help the gunk in his lungs break up better.

Like I said before, there has been nothing but Doom and Gloom coming into room 1032, but today his Transplant Coordinator Tammie came to visit us.  She was so happy to see how well Graham looked and began telling us about other Transplant patients.  Specifically about a CF girl.  She was 6-8 years out of transplant when she began rejecting.  She was also denied another set of lungs because of her circulatory system.  Hers is actually worse, she ONLY has access to her veins through her one port, Graham should have more than this.  This girl (obviously she didn't say names - go HIPAA!) has also been under Rosenblatt's care for quite sometime and she has been successfully living off Photopheresis for SEVERAL years!  Now we can read all the literature we want, but until we have a real story, it's hard to fully believe.  We literally began smiling.  Graham is NOT a clapper and he hates that I am, so I just mentally began jumping and clapping.  I'm a sucker for happy stories.  Tammie also began telling us all the success stories she has of this new anti-rejection med they have put Graham on.  This drug, which I have forgotten the name, is used on patients for when they begin to reject.  The side effects are much more prominent and it takes longer to see blood levels which is why it is a last resort med.  But apparently in the Baylor Heart and Lung Transplant Clinic, there are many patients who have gone on for years on this med while in rejection - one patient in particular was MUCH worse off than Graham and actually saw improvements.  Insert mental jump and clap.

Though we want Graham to be better than he is, it will be nice to have him home.  I will continue to stay home to make sure he is able to do the little things.  It is still a chore for him to go to and from the bathroom in his tiny little hospital room, so our house worries me.  And if necessary I will bust out my Danika Kirkpatrick skills and take him right back to Baylor.

I think I just smiled...

On Thursday of last week I made a goal; if Graham stayed in a stable state, I would go home and try to return to some normalcy, for Jordan's sake.  Graham has stayed fairly stable since Wednesday.  His heart rate has not increased since doom's day, his blood pressure is remotely normal for him, and his breathing may be the same, but he is now down to 2-3 liters of oxygen instead of 5-6 liters.  While he is very tired (there is no rest for the sick in a hospital), he has been feeling fine.

So Sunday came.  As I was leaving the hospital to go to Jordan's soccer game (which was conveniently in Dallas) I caught myself smiling in the car.  No one was telling me a joke or a funny Graham story, there are A LOT of those gems.  And though I was excited to see Jordan and see her play soccer, it wasn't that.  I was truly happy on the inside.  It may have been short lived, but it was a nice feeling.

A dear friend had arm bands made for Jordan and her girls.  They are green (for transplant) and purple (for Cystic Fibrosis).  The girls played in honor of Jordan's Daddy yesterday, it was such a beautiful day.  Graham had asked her, "Score a goal for me!"  and by golly - Jordan was hell bent and she scored the only goal for her team!  So proud of our girl.  We came back to the hospital after the game and Jordan told Graham all about her big day.  He was a proud Dad.

Sporting their arm bands

Playing for Daddy!

Jordan's Goal for Daddy - it's a little blurry, she is the white blob on the left, hehehe.

 

I got to sleep in my own bed last night and both our cat and dog did not leave my side, I think they missed me.  I was very anxious leaving Graham for the night.  It seems the few times I have, the next day would be horrible. 

 

Today is a rough day.  Not as bad as previous days, but he feels out of it and "junkie."  They will be ordering another chest x-ray to see if something else is going on.  He has started another anti-rejection medicine, but how he feels is not any of the side effects.  I did make him exercise yesterday...maybe he's just a little exhausted.

Another one bites the dust

Graham has successfully completed 2 photopheresis treatments.  Friday's treatment was a WHOLE lot less painful.  He already knew it was going to hurt so he was prepared this time.  He reassumed the death grip on my hand right before the nurse began inserting the needle, and though as he was squeezing he asked why she stopped; "Oh, I'm done!"  Jeanette (the nurse) had to of thought we were crazy with the dumbstruck stares we were giving her.  Graham explained to her that it didn't hurt anywhere near as bad as yesterday.  She gave some excuses, but we all knew, the nurse yesterday made it a point to make it hurt - UGH. 

Here is the INSIDE of needle - the picture does this sucker no justice.  It is as long as my boney pinky and fatter than a tire or ball pump needle.  Now the actual needle is longer and fatter and that is why they have to use so much "leverage" to get the big ol' needle in.

 



Beginning the treatment might not have been as painful, but the actual treatment was more draining on Friday.  How the process works...the machine pulls about a pint of blood out at a time and treats the white blood cells.  The computer does all the thinking, so it isn't a consistent amount of time for each pint, depends on how long the computer would like to zap the cells.  Once done, his treated cells are rejoined with his blood and slowly returned to his body.  As this is happening, another pint is leaving his body.  So at any given point during this 2 to 3 hour process, he is down about a pint to pint and a half of blood.  He feels cold, tingly, and just plain crummy/weird.  My Mom made the funniest analogy - it's like a vampire didn't like their food and they are sending it back- hahaha.  Could be?

But there is a TV to keep him entertained...Who doesn't love Shaun the Sheep????

It has been a long week full of ups and downs.  Even though we are still angry with the decision that was made, we are calmly trying to find resolutions.  First step though, get through treatments and PRAY they work.  We have missed our daughter TERRIBLY so we had her pack her bags and come up for a sleepover.  Be prepared to have your heart melted in

 

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The reason he fights so hard

 
 

I also got to see and play with our other girl Sadie :)

 

 

 

 

 

 

 

 

 

 

 

 



IMPEACH ROSENBLATT

If I were to ask you, "what is your quality of life?", what would you say?  Would it be fair if I answered that question for you?  Or, how about someone you have NEVER met makes that decision after reading some "facts" about you?  Who do you think has the right to say if your life is worth living or not?  Apparently a team of doctors and surgeons and 1 rather annoying nurse practitioner. 

As I said earlier in the week, the transplant team was going to meet and talk about Graham and see if he would be a candidate for a 2nd transplant.  Graham has 3 concerns that were brought against him: 1) He has drug resistant bacteria in his lungs (which he had during the past transplant) - so next, move on....2) His circulatory system on his left side is completely blocked (again, this was there the 1st go round) - moving on...3) His aggressive and quick rejection has no "research" or "known success rates."  So they decided, that if they do a 2nd transplant on Graham, the chances of him coming off the vent would be low and he'd die within a year...this would be a "bad quality of life."

Graham's current quality of life in 1 year...dead.

So YOU TELL ME - what quality of life you are looking for Mr. Drs?  A life that you decided wasn't worth a shot at?  A life that you believe that one would rather sit in a morphine state and wait to die than go out with a fight?  BS!  I know for a fact that you have given transplants to patients that have an even slimmer chance of living.  I know that you have transplanted patients that have already lived full lives and raised their children and walked their daughters down the aisle, and they didn't make it because their bodies gave out.  I would love for them to look at my daughter in her eyes and tell her that her Daddy's life if not worth another shot.

OH...But on the news tonight, congratulations Baylor, you successfully transplanted 15 patients in 1 day.

First Photopheresis

Well it happened...and it was quite an experience.  We get down to the lab and there is a long row of beds with all this equipment next to them. Picture a comfortable morgue.  The nurse tried to forewarn Graham of what was about to happen to him, but I don't think he could have ever prepared himself for this.  Let me just start out saying, Graham has a HIGH tolerance for pain.  I mean, there really wasn't much complaining after transplant where they cut you open, crack your ribs, take out some lungs and put more in.  All he would say was that he was "uncomfortable."

So the nurse gets out this needle that, I kid you not, is not much smaller than the meat thermometer you use on a turkey.  Graham's eyeballs almost popped out of his head.  Next thing I know, I'm up and running to hold his hand and lord have mercy he has a strong grip.  His feet could not stop wiggling and he went from a nice olive skin tone to being camouflaged with the white sheet.  The Nurse had to shove with a LOT of pressure, this big old needle through his skin and port, straight to the catheter.  Graham's pain level was a perfect unhappy face 10.  I felt so bad for him.  He said he literally went to another realm of mind and spirit.  First pain, then nausea, then a tingly cold feeling; he decided to just be still and get through it.

This is when I realized just how funny God's sense of humor is.  The master match maker made sure he put a hemophobic (fear of blood) girl with a chronically ill boy.  Today, this girl had to watch blood being cycled out of her boy.  I didn't pass out, but I almost did; and I kept my cookies, though dry heaving was involved.  But I made it without a single code purple!  Here are these 4 men and 1 woman getting these big ass needles put in them and feeling cold and tingly, and I'm over on Graham's bed, healthy, but shaking and moaning.  Such a funny God! 

Graham is feeling well this evening.  And no, it's not from the treatment; that will take a couple of weeks.  But we are now working on 2 days of normal heart rate, normal blood pressure, and normal eating.  He still can't get up and move, but going to the bathroom or getting up to wash his hands is no longer a painful chore. 

I know he is dreading that needle tomorrow - poor guy!