Sick x 3

Well, it happened, we are all sick with colds.  And if I were one to point fingers, which I'm not, Graham had it first.  I do have to say, it's really weird watching and hearing him cough again.  Before, I would get some dirty looks from passer-byers when I was doing nothing for him as he looked like he was dying from his regular cough.  For those of you who have never witnessed a CF coughing spell, they cough for about 30 - 60 seconds, turn purple, and are gasping for air.  Yes, the first couple of years into our relationship, I would get all concerned, rub his back, (freak out in my head) but learned that there was really nothing I could do, that this was normal.  Plus, he really hated those who asked if he was ok, so I learned to back off.  Rubber neckers however, they would always give him either sympathetic looks or phrases and give me an evil glare as I played with either my phone, food, or whatever was around.
Now, it's a different story all together, he's NOT supposed to be coughing like that anymore!  The other day, he sat on Jordan's bed and did one of his classic turn purple, cough for 30 - 60 seconds, spells. And right then, I felt like one of those onlookers, I didn't know what to do...I gave him sympathetic words and looks.  I felt so bad for him.  WHY CAN'T I JUST LEAVE MY GERMS AT WORK, and Jordan's at the Daycare!!!  So the plan was, disinfect the entire house.  Would have been great, but now I'm sick (Jordan too - that means Mommy is up at all hours of the night), and I feel like doing almost nothing.  And on Vacation too!  UGH!
Graham is over it, except for something called "Post Nasal Drip" and he hacks and coughs all the time.  Jordan is on antibiotics for an ear infection, and I'm drowning myself in NyQuil and DayQuil to get myself through the day.  Oh and Roscoe still gets ointment in his eye 3-4 times daily.  God, Please keep Bocephus healthy, no more sickies!!!  It's getting annoying!
Graham went to clinic on Monday and got a mixture of good and bad news.  His lung functions are up to 66% and his potassium level is good.  His Coumadin levels are not where they want them, so he had to be careful not to get cut, or it would've been a bleeder.  And his lungs were a sounded a bit rattle-ey (hey, if the doctor can use that word, so can I).  I can't tell you how nervous I was that he would not be coming home again.  Luckily though, Dr. Rosenblatt just wanted to do a bronchoscope on him to see how everything looks and clear him out a little.  And that's where he is today.  He had to be there before the sun was even up at 6:00 am.  His Mom just took him to work and since he'll be done at Noon, she'll just bring him on home too.  I will post soon on the results, fingers crossed everything looks great and once Graham's lungs are nice and unclogged, he'll feel better and cough less.
Goal: To be healthy by tomorrow, Thanksgiving.  Will be pumping Jordan and I with LOTS of Vitamin C.  We wish a HAPPY THANKSGIVING to everyone!

And he's back home again!

Whew, and he came home just in time.  I think Jordan and I were on the brink of massive temper tantrum because of how much we missed him at home.  Going up to the Hospital doesn't even come close to satisfying us.  Poor Roscoe, he got so excited he ran smack into a wall because he couldn't see it.
Apparently Graham's Kidneys are not excreting potassium, so it just keeps building up and up.  So what are they going to do for him?  More pills.  I guess when you are taking roughly 60 pills a day, what's a dozen more?  If it helps and fixes him so we don't have to worry about Heart issues, fine by us - he likes apple juice anyway, gives him an excuse to take another drink.
He goes back on Friday to check his levels again.  Fingers crossed they are fine, we have big plans starting Friday evening.  Date night, sleep in, Golf, sleep in, catch up on all the Jersey Shore episodes we have never seen, sleep in...oh the possibilities when I have a week off for Thanksgiving and Jordan is with the Grandparents for the weekend.
I have had a mounting list of things I am thankful for this holiday season, but I am DEFINITELY thankful my hubby is home to help us relax this week.

Huh?

Imagine: Sitting in bed, relaxing, thinking...I might get to go home today - home, where I want to be more than anywhere else in the world.  Frustrated at the events that have taken place in the last week.  Frustrated that there was actually nothing you could do to prevent them, and almost nothing you could do to prevent them again.  But nonetheless, you feel completely fine.  Then over the loud speaker you hear an all call RRT to room 1005, RRT to room 1005.  You realize, hey, that's me...then in comes every nurse, doctor, tech available rushing into your room.
Yep, that was Graham this morning.  Graham's Potassium Levels were so high he was at risk for Cardiac Arrest.  They poked and prodded him, drew more blood and made him drink some nasty tasting medicine, and now is hooked back up to a heart monitor.  The scary part about all this, he couldn't feel a thing.  He felt completely fine.  How are we to know now when he needs emergency care before it's too late?
He was given a list today of all the foods that are high in potassium.  I do believe that the list for foods that are not high in potassium is much smaller, and leaves no guess work.  Chicken and rice, I think that's it.  But then again, he still has to watch his sodium too. 
So here we are again, watching levels...waiting for the doctor to say the magic words: "You may go home."  I really don't want him going home before they fix his problems though.  I would like him home safe and sound please.

Faith

I've always believed that Faith is a personal thing, to not judge what others think or believe.  But I will say, I've always been frustrated at those who don't believe in anything.  This whole transplant process has really been an eye opening experience for me in the area of Faith.  Before it all began, I was a strong Christian who prayed regularly and tried to at least watch a Church on TV if I didn't make it to our Church on Sunday Morning.  Graham on the other hand questioned a lot, and I never understood why.
Once Graham went on the list, and he increasingly became more and more sick, the strangest thing happened.  Graham's Faith became very strong, regularly praying and watching Church on TV; where as my Faith began to fade.  I was the one questioning what God's path for us was, never thinking God didn't exist, but thinking God had it out for me.  Why would he let an amazing person be misunderstood, why would he let an amazing father slowly die a painful death and not allow his daughter to ever truly know him.  Then transplant came, and again, Why did Graham have to struggle so hard in recovery?  Why did Jordan have to get sick when Graham finally got to come home?  These are just a few of the questions (tips of my everlasting ice burg) and frustrations I had...and you know what's weird, I got my answers.
1) Graham's Faith has become so strong, that he helped pull me out of my darkest times. 2) God didn't just answer me once, but made sure there were signs EVERYWHERE I turned. 3) I started to slow down, and figure out the silver linings of everything. And 4) I now fully understand where Graham was and why he believed what he believed.
From sermons speaking of God still loves you and thinks of you when things are not going right, to a sign at Debbie and 360 saying almost the same thing.  There was an article in people about a man losing his entire family, yet he still goes on, honoring them everyday.  Jordan, one of the most perfect angels.  Everyone of our family and friends who have reached out through texts, flowers, support, prayers, and aid.  I get it now, I get it all. 
If Graham didn't stay in the hospital for 5 weeks, he'd be in a home in Dallas, not with Nurses and Doctors visiting him daily.  He was right where he was supposed to be.  Now, I don't understand this latest bump in the road, but I now have Faith that God does and will help up through it.
Thank you to everyone again.."I Thank my God every time I remember you, constantly praying with joy in everyone of my prayers for all of you."  Philippians 1:3-4

Interesting Week...to say the least

Well, Graham is back in the hospital...to find the silver lining...NOT for a rejection!  We were trucking along, in pure bliss, when we decided to order Chinese take out.  The following day, Graham woke up swollen, like he was towards the end of his hospital stay.  We thought, "That's weird, must be the sodium."  So the real geniuses that we are, we ate Mexican food, I made Jambalaya (sausage, ham, chicken broth - sodium ridden) and by Tuesday, he woke up with his eyes swollen shut.  Had to be the sodium, right? 
We had big plans for the weekend, a childhood friends wedding, and we both really wanted to get out of the house leaving Jordan safely at home.  But by Saturday, his swelling hadn't changed (even with us eating sodium free all week).  Luckily, swelling went down my the evening and we headed out all dressed up to have fun.  And boy did we ever!  Vice President Biden was in attendance, and it was pretty cool getting to hang out with him.  Graham was excited that a Secret Service Agent liked his truck (big eye roll).  We hung out with my brothers and a friend I hadn't seen in awhile and left happy as larks.  Graham had spoken with the doctor on Friday, and just as precaution, he wanted to see him in clinic on Monday.
So on Monday, he went through his normal schedule: blood work, physical therapy, PT's, but then they added another test (and yep, the name has completely escaped me!).  The doctor who ran the test came out and told Graham to sit in the wheelchair and not move again.  Turns out, Graham had a massive clot in his right jugular, and a minor clot somewhere in his chest.  He called me around 4:30, I have my phone hooked up to my speakers in my car, when he told Jordan and I that he was being admitted, we both started crying.  We finally had our Man back and now he's gone again.  Poor Jordan just screamed for 30 minutes (until I could get her McDonald's - always cheers the kid up), she knows what "hospital" means, but doesn't understand why.
Turns out, Graham had all the signs of SVC Syndrome.  In layman terms, there is an obstruction (in Graham's case it was his central line during and after transplant, and also his port) that presses against the vessels that connect the chest to the head, and then causes clots.  So they had a plan.  First, pump him full of Heparin - thin his blood out enough to get blood flowing and hopefully dissolve clot.  Second, have a procedure done where they scope his vein/vessels/arteries to see what is going on.  If need be, balloon his vessels to help blood flow.  Third, medicate during procedure.  Fourth, start Graham on Coumadin, a blood thinner that levels would need to be monitored (why not add another one).  And last, put stints in.
After 24 hours of heparin, and no progress he went down to have the procedure done early Wednesday morning.  I was at work under the impression this was a quick thing, 4 hours later Graham's Mom finally told me that he was back in his room and that it was nothing what they thought once they got in there.
They found that he did not have SVC Syndrome, but a totally different one.  Instead of the vessels connecting chest to head, it was arms to head - and not just one side, but both left and right.  And instead of blood clots, they found that they were completely blocked.  They were able to get into his right side and balloon those vessels, but not his left.  Their only answer was he needed stints put in both sides and needed to remove his port; the consequence...they would be ruining any chance of him receiving IVs via port or pic line (his veins in his hand or arms have never been able to keep with regular IVs).  In a perfect world with no rejection, illness, accidents, etc. this would be fine.  But if we were ever in a situation that Graham needed IV antibiotics fast, did we really have the time for them to sit and think on creative ways to administer them to him?  Yes, if there were no other option, but are there other options?
I was so tense all day long, by the time I could relax, I felt as if I was in a car crash - ached all over.  Jordan and I went to see him - she was so excited, she missed him so much.  Graham was so tired, but he was already looking better.  Dr. Rosenblatt came in, we were talking about the wedding and I began to show him pictures.  Where everyone on Saturday night thought he looked so great, Dr. Rosenblatt was thinking how awful he looked (it's all about perspective I guess).  He took my phone and began showing the nurses, teaching hospital - signs of clots - ha!  When we began talking about stints, you could see the how uneasy Dr. Rosenblatt was.  He didn't like the fact that it would be difficult for Graham to get IVs either.  But the other doctors were still pushing it.  This was all on our 3rd Wedding Anniversary - I can think of many better ways to spend it.  But at least we were together.
Thursday came, and still no word when Graham might be able to come home; but the decision was made...not stints.  If everything works right - the ballooning, Coumadin, Heparin, Graham should have no more problems with clots.  No Clots = No Stints.  No Stints = possible IVs.  I feel better.  This world is a scary place!
So Day 6 in the hospital today and Graham needed a pint of blood - platelets were low, hopefully because of meds.  Jordan and I met my parents and Aunt Kim up there and we had a blast!  The blood really perked him up, I think we did too.  He is so tired and frustrated, he wants a break so bad.  And he deserves it!  Supposedly he needs his Coumadin levels a 2.0 and then maybe he can come home.  They are only at 0.9, ugh.

Why Not Add One More...

Yes, I know, it's been awhile.  Not posting my excuses.  Graham has been doing great!  Everytime he goes to the doctor, only good things come out of it. So good in fact (still crying over this one) that Dr. Rosenblatt is NOT renewing his handicap placard.  No more close movie spots, Wal-Mart parking, and what hurts the worse, no more close parking during the holiday season!!!  His current placard ends in November (what!!!!), all because the Dr. says, "He needs more exercise."  Please, Wifey needs to shop too!  But, I will trade Graham's health over 2 miles of walking to the mall.
Graham went again to clinic today.  Lung functions were up to 60% (omg!!!), every little step is soooo awesome.  His levels of anit-rejection meds have been all crazy though. Friday they were really high, and today were really low.  Don't know if they will ever level out, but what's changing the medicine box every few days when you get a whole new lease on life.
And because of this whole new lease on life, Graham has become the energizer bunny.  Up at the crack of dawn, running and playing and doing whatever until he goes down around 10.  This last week, he's walking around moping, thinking he's hit this "brick wall" and has the doctor test him for colds, infections, etc.  when all it was...HE WAS TIRED!  Hello...people do need rest.  New lungs or not, you can't just go and go and go.  Lesson learned, we think.  But again, he was dragging wife and child all over the place over the weekend.  We had a great weekend planned: breakfast at "Our Place," pumpkin patch with cousins, then birthday cook out for our sister-in-law (this was just Saturday).  We had a great breakfast and were on our way to the patch when we learned that it was closed.  This was not ok for Graham...he began looking up more pumpkin patches and didn't settle until we found one.  Thankfully it was right by our house.  By the time we got there though, it closed due to weather.  So we headed on down to Cleburne and made a day playing with my side of the family.  We talked, played, ate, carved pumpkins (Graham's was NOT G Rated...those that know him, most likely received the picture) and had a blast.  Thank you Andrea for such a fun party!  On Sunday, we went to Church for the first time as a family in a very long time.  It was so nice.  I have been waiting for this day for a really long time.  We get in our Sunday best, get to church, sit in the pew and Jordan looks at me, "Momma, I need to go potty."  Are you kidding me...ugh - I decided to wait.  Five minutes later we smell her toot.  I ask if she still needs to go and she says yes.  So we depart.  After a successful potty trip we are on our way back down the aisle, pastor giving announcements (so congregation quiet) and Jordan starts hollering, "DADDY, I POO POOED IN THE POTTY!"  at least 3 times.  Several people congratulated her - Welcome Back Johnston's to Church!
After church we met our friends at the Pumpkin Patch and J had a blast.  She bounced, and mazed, and rode a pony...she listened to stories, rode a hay ride and a Daddy piggy back ride.  The highlight was picking her own pumpkin.  We had such a great weekend!  I would have NEVER imagined doing all this pre-transplant and still having Graham up and sitting next to me (with energy) today.
But sadly, my duties of care taker are not over.  Our poor little Boston Terrier might lose his eyeball :( He and our other dog, who is significantly bigger, were playing.  Bo accidentally bit Roscoe's eye.  Roscoe is blind, and we are now medicating the fool out of his eye trying to save it.  Thank you to Cassie for driving and helping us take care of our sweet boy.  Poor dogs can't play with each other anymore.
But it's been a great couple of weeks.  His Aunt Sharon came and helped out the first week I went back to school.  Thank you sooo much!  She drove him all over the metroplex...doctors, cars, alarms.  Probably more than she bargained for, but they had some great times.  And now his Dad is here.  Graham has been released to do almost everything (doctor even says for a haircut too - hahahaha), but the company is nice to have - so thank you Dad!

Our Thank Yous

Hopefully from here on out, this Blog will get more and more boring for y'all (just means nothing but progress is going on). I will keep writing because I have found it to be a calming thing for me though. For a quick update: we were here on Monday for all his tests and visits. His blood work came back that almost everything was normal!!! That means kidneys, vitamin levels, lung functions improved to 48%, fluid was slightly reduced so no tap this week, and cholesterol was looking good - he's eating better :) The only thing a little off was his Prograf (anti-rejection med) was slightly low. Remember last week it was toxic high; so they changed his dosage again and sent us on our way. This could be a life long thing of constantly changing his dosage - if you could only see my sweet, OCDesque, husbands face when they told him there might not ever be a set dosage, haha, this bothered him; but he has new lungs, no complaining. Now I want to take sometime to thank everyone - specifically. Thank you notes to come, my mother raised me better than that, but I wanted to share all the great things that others have done for us.
First and Foremost, thank you to everyone who prayed and sent positive, happy thoughts our way. I couldn't imagine doing any of this without God, and your thoughts and prayers certainly gave him a positive influence. Up until his surgery, I wondered if he would ever make it. It was November of last year that a doctor at St. Paul gave him a year to live. Now, doing the math, by that doctors mouth, he didn't have much longer (and come to find out, his favorite doctor had similar thoughts). And then came the surgery, that without the amazing anesthesiologist sweating bullets for 8.5 hours, he wouldn't have made it either. Prayers were definitely answered...THANK YOU!
The Zahradik Family: Thank you for taking in Jordan for that first week. Because of you, our little angel had a warm, happy place she calls her second home to go to. She was happy and didn't think anything of her Mommy and Daddy being gone. I was able to focus all my thoughts on Graham, and never once did I stress and have a bad thought about J. Y'all took her in without question, and considered her your own, we'll never be able to thank you enough.
The McMillin Family: Before there was J, our babies were Bocephus and Roscoe. Without thinking y'all watched over our dogs and not just feed them, but played with them so they didn't get too cooped up. Y'all didn't stop there either, thank you for all the upkeep to our house, cleaning, mowing, Brandon being Handy Manny, and my favorite...all the great distractions Stacy and Kendall gave Jordan and I. In a time I didn't think I could smile much, I smiled A LOT! J and K are so funny. And I'll never forget that Friday night of poster making, paint and masks. We love y'all and thank you sooooo much for everything!
The Rash's: Words will never be able to explain just how much y'all mean to us. No matter how much we begged that y'all really didn't need to be there, y'all came every time no matter the hour and helped pass the time in the worst hours...waiting for those lungs. The second trial will always be my favorite, all of us crammed into that tiny room, "sleeping" in the most awkward positions, and literally laughing through the entire wait. Without y'all, all three waiting periods, would've been horrible...we might've said we could do it without you, but Graham and I agree, we couldn't, you are both members of our immediate family.
Our Families: Thank you for all of your patience this past year. All the "on calls" and vacations on hold, the missed parties, baptisms, births, and graduations. Contrary to popular belief...we REALLY wanted to be at them all. We were so lucky to be at our Cousin's wedding (getting the third degree from the doctor meant nothing), and hopefully can make up for lost time within this next year - get ready, Graham's favorite bathing suit is! Thank y'all also for entertaining us all those times...taking us to eat, shopping, swimming, parks, endless hours of sitting and waiting. We love y'all all so much, and would've never been able to do any of this without y'all.
The Kelly's: I know y'all are family, but all the help y'all have given us over the past couple of weeks needed another note. Thank you for helping J through all of this, she sooo loves y'all and her cousins and we love that everyone is getting to know everyone better. Y'all were amazing distractions for her and will thank y'all for many years to come. Thank you also for all your help with the house, all the set ups of cleaning, moving of furniture, moving it back, mowing and edging our yard, Holly, dinner, phone calls and allowing me to cry, hospital visits that might've scarred your eyes (hahahaha). We love y'all!!!
The Reid's: OMG! Thank you thank you thank you! Because of y'all, we were able to get our house clean enough for Graham to come home and stay home. This was one of the biggest stress relievers and we'll thank you a thousand times before we start over.
Barbara Boulware: We LOVE our good luck pillow cases. They are still on our bed. They brought on a smile when I didn't think I had one. The cowboys and cowgirls fit our personalities well and the horse shoes really brought us some good luck. Thank you also for all the treats and magazines...I had completely forgotten how great Cheez Whiz was - and now I'm keeping a steady supply in the pantry :)
Sam Pettit, Rene Kirchoff, Sondra Thomas, Scott and Kathie, Michelle Meister, Angie Stevens, Tammy Ledesma, Cassie Rash, Rachel Kim, Bryan Kelly, Mom Kelly: Thank you for all the yummy food or gift cards to get food! I didn't realize how hard it would be to care for 2 people and cook at the same time, I tried and cried and am REALLY GRATEFUL for all of y'alls food! It has been wonderful and greatly appreciated! Graham is beginning to put weight back on (wahooooooo) thanks to y'all (so am I, but it's worth it), thanks again.
To all of you for keeping in touch with us...through phone calls, visits, text messages, facebook, emails, cards. I don't think I can put into words how much this has helped us through everything. A big fear of ours has been that because of Graham's health and our lack of being social, we have lost contact with some. So even what you think is a simple text, it gave us a smile and warmed our hearts. It was not just a simple text, card, message...it was sooo much more!
Our families at work: We are the luckiest 2 people to have such supportive and loving co-workers. God really knew what he was doing moving me all over MISD and Graham to Wachovia. We love y’all very much and can’t wait to be back!
To anyone I may have forgotten, it is not lack of appreciation, but my abundance of spacey-ness. We thank everyone who helped us out on this road!

Nothing Can Bring Us Down

We have been having the best days since Friday!  Graham finally got to come home to his own home, bed, dogs, FAMILY...and we've just been smiling ever since.  Jordan's day on Friday would bring a smile to the saddest person's face.  As I picked her up from school I asked her, "Guess who's at your house?" She said, "Daddy?" Daddy's at my house?  DADDY'S HOME DADDY'S HOME!" She began screaming in the car and flapping her arms and kicking her feet.  When we pulled into the drive way I told her she had to wash her hands really good then she could go see Daddy.  She ran into the house chanting, "Must wash hands, go see Daddy; Must wash hands, go see Daddy." And she washed them Good!  She sang her whole wash hands song, quickly dried her hands and ran into the bedroom screaming DAAAADDDDDY!  It was awesome!  She gave him the biggest (softest) hug and it was chaos from there on out.  Daddy do this, Daddy do that, Daddy I have trash, Daddy I'm eating...Daddy Daddy Daddy!  I can't tell you how happy we all were, my family was finally under one roof.
We went back to the doctor Friday morning for lab work, and by the afternoon he had his new Prograf dosages to take.  We were able to give him a shower Friday night and by Sunday he had perfected doing it all by himself (Wahoo! It was hard bathing him and chasing a 2 year old at the same time without me getting wet and trailing water all over the house - all the while our Boston Terrier chasing me and barking at me too). 
Friday we also had a nice surprise, our neighbor friends bought poster board and paint for our two girls to make "Welcome Home" signs for Graham...that in itself was hysterical.  They had so much fun, and when we came back to the house to give them to Graham, everyone wore masks.  Imagine two 2 year olds, covered in paint, giggling and trying to keep the masks on.  Made the night even better.
On Saturday, we watched the Longhorns lose to OU...we kind of expected it, and were happy it was a closer game than we predicted, but nonetheless, HATE seeing them lose.  However, we were still smiling - Nothing could bring us down :)  And you know that time, the time that is the most inconvenient how am I going to fix that now time?  Well...our microwave broke, guest toilet is leaking everywhere, freezer blew a circuit and we lost OUR ICE CREAM (but luckily last season's deer meat is still good!); all we did was smile and plan a trip to Lowes (oh and press the reset button).  If we could get through the past 6 weeks, pretty sure I can learn how to reheat left overs in the oven. Even though IT IS A PAIN!  You never realize how much you use your microwave until it dies on you, and then you wonder what they did in the pre-microwave era!
We are back at the hospital today going through all the different labs, PT, X-Ray, tests and Clinic mambo jambo.  Graham is dreading getting his lungs tapped.  All I can do is look at him and say "Really? You just went through one of the most painful experiences ever and you are afraid of a needle in the back?"  He just smiles and says, "I Know."  I'm so glad he's home :)

He's Free!!!!!

Boy am I regretting waiting so long to write...'cause there's a lot that has on!  First and foremost, GRAHAM IS OUT OF THE HOSPITAL!!!  Graham went in for his bronchoscope on Monday and woke up without his chest tube!  So the waiting for Dr. Rosenblatt to come for his visit began.  He experienced a lot of abdominal pain the night before, enough to take Morphine again and he hadn't had that in almost a week; and the concern of the fluid in his right lung and his pnemothorax kept us anxious if he'd go home or not.  But the orders finally came in, he got to come home Tuesday!!!
Here in the Johnston family, things don't come easy (and it's rather annoying...just a tiny break please!).  Monday, I was doing last minute stocking the fridge shopping when our daughter Jordan started acting funny.  Got her home and she had a 101 temp. Ugh, maybe it's a fluke.  Give her IB Profin and put her to bed.  She then wakes up at 2am with a 102.6 temp - agh.  Graham can't come home to that!  Take the day off and take her to the doctor.  Fortunately it was just a cold, but still, Graham can't come home home, he needs to stay at his mom's for awhile.  I can't describe how mad, sad, frustrated, annoyed I was.  Here it was supposed to be this happy time, Graham has new lungs and he's getting out after a long 5 weeks (7 if you count the two weeks he was in the hospital prior), but he can't come home and we still can't be around him much. 
He did get to come by to pick up some stuff.  Jordan was really mad at him at first.  Wouldn't talk to him, wanted me to hold her, and she would just bury her head into me when he got close.  I don't even know what she thinks and I feel so bad for her.  I completely understand her being mad, frustrated, feeling abandoned; I just hope she gets over it smoothly and doesn't remember much of all of this. 
Jordan warmed up to him within about 15 minutes and OH MY GOODNESS!  It was Daddy come here, Daddy come see my big girl bed, Daddy come play blocks.  And in between each sentence, she was hugging his legs.  Not going to lie, I was a little nervous about when he had to leave.  But she was on such a high, it didn't matter.  She got to see her Daddy, and Daddy got to see his girl.
On our first day to hang out together, we had a great time.  I decided to take advantage of his disability and play him in Wii Bowling.  I kicked his butt 3 games in a row, and rubbed it in (don't judge, I NEVER win anything and he is a really sore winner!).  But then he began to win, thank goodness he started to get tired, I'm still up on him :)  Then we went and got him a new phone.  Ahhhhhhh, so nice to have him back and connected!  And that is one more thing he doesn't have to rely on others for too, he has a little more freedom. 
His swelling in his arms is still way up; they've finally determined that it is a lymph node problem.  He's wearing these compression sleeves and gloves and they seem to be really working for him.  All of his muscles are really weak.  He walked 3/4 of a mile on Wednesday and today, his shins and back are really hurting.  Lucky for him, they gave him a BIG bottle of pain meds and he's ACTUALLY taking them, such a huge step for him! 
Today we went to his first post discharge Clinic Appointment.  He got his blood drawn, x-rays taken, PFT's (lung functions), and physical therapy showed him no mercy, then finally got up to Clinic to see Dr. Rosenblatt.  Very interesting visit.  Dr. Rosenblatt revealed to us that he was actually very concerned and worried about Graham Pre-Transplant (nothing that was new to me, I was worried too), but pleased how everything has gone.  His labs today were a little bit of concern.  His Prograf level (anti-rejection drug) was really high, toxic high, and he's now ordered not to take it again until we talk to them tomorrow.  We get to go to Dallas again in the morning.  His Kidney levels were also higher.  But the big concern was the fluid surrounding his right lung and will probably be drained at our next Clinic visit on Monday.  This is done by needle through back with catheter straight into lung cavity, then drain - esh! But needs to be done.  What we were most shocked by was his PFTs were only at 45.  Now, this is almost double what they were before lung transplant, but we just assumed they would be higher.  An average person's lung functions (percentage of lungs being used) is around 80.  Graham pre-transplant was sitting in the low 20s.  The good news is, it will get higher.  The fluid around is lungs is most likely affecting his number, and as he gets stronger and works out more, his number will begin to climb.
It has been a great few days, Graham will hopefully come home to us tomorrow and then I will be walking around with the biggest grin on my face...I still miss him and can't wait to have him home.

Two steps forward...and standing still

Wednesday came all the great changes!  The doctors gave Graham Albumin, some wonder drug that pulls all of the fluids out of his veins and tissues and into his body, and a couple of diuretics.  Everything started working Tuesday night and by Wednesday morning, he had peed out 12 pounds!!!!  When I came to see him Wednesday night, I saw my husband's old handsome face...it was great!  He was in much better spirits too.  His speech had actual inflection in it and not just monotone unhappiness.  He had told his mom that he now thinks he can get better.  What a difference 12 pounds makes! 
He has since lost a couple more pounds; most of his swelling is all gone.  He is only swollen in his arms, chest and stomach.  On Wednesday, his left arm was not swollen but right was, I had to laugh a little...it was funny looking.  There was a part of me (kind of a big part) that thought he would never look like himself again.  But he does, and he feels great mentally...and that makes me so happy!
What I didn't realize is they predict he will leave the hospital weighing about 100 pounds (he came in 110 and that's low for him).  This is not how it's supposed to be, he's supposed to FINALLY WEIGH MORE THAN ME! Ugh!  But, here's how this goes: 1) His body went through a really big ordeal (duh) and is trying to cope and recover from the surgery; 2) All the swelling has been pressing on his stomach and affecting his appetite - so no eating; and 3) He was on a liquid or mechanical (looks like kitty tuna) diet for 2 1/2 weeks.  So of course he's going to lose weight.  My goal is to fatten him up when he gets home so I can finally be the little one in the house (I'm dreaming, I know).
He has been sitting in this position since Wednesday...no progress, no digressing.  It's not bad, but it's not good that he is progressing.  It's annoying.  He has also developed a small pneumothorax in his left lung (a small hole).  Dr. Rosenblatt has full confidence his body will heal itself.  He also wants Graham to come home this week...hopefully get his tube pulled soon and home by mid week.  We are taking these words with a grain of salt, but secretly dancing a jig.  Jordan and I have already made plans to do nothing but hang out with Daddy next weekend and watch the TX/OU game.  We'll see if these plans come true!

Waiting...

Not really much has changed since Sunday, Graham is really tired, still swollen, still with chest tube.  But there is talk of bigger and better things!  Dr. Meyer's wanted to talk to Dr. Rosenblatt on his thoughts on pulling the tube.  It is very evident that Dr. Rosenblatt wants it pulled, so fingers crossed.  But it is never that easy...he is still draining, not a lot, but enough to keep it in.  Then he also has fluid in his right lung.  Now here's a bit of interesting information; normal lungs are not connected, they are two separate organs working together.  Transplant lungs are connected, therefore fluid can go between the lungs as it pleases.  That's annoying.  So where Graham has a tube trying to drain his left lung, the fluid got smart and moved to his right...ugh!  He just needs to start coughing more and more to try and get it out that way.  But he is in pain.  He no longer feels the pain from his chest tubes, now he feels his incision and rib cages.  He imagines that it's from where the surgeon was scraping his ribs to get his old lungs out - OW!
The new Kidney Doctor started his secret weapon today...something through his IV that should pull the fluid out of Graham's vessels and tissues.  Then he's going to take 2 different diuretics to try drain it all through urination.  Fingers crossed that this works!
So many reasons Graham could be tired; doctors are saying that this is "Normal in this phase of healing" but we have a different theory.  The man hasn't slept in 6 weeks!  The nurses and techs and doctors are in and out of the room messing with him every hour.  Oh we can't wait until he's home.  He'll be more comfortable, sleep better, and be able to see his little family everyday - the best medicine in the world.
I'm still holding on to a little hope that he comes home this week!  Our duct's have been cleaned, carpet's cleaned, house head to toe deep cleaned, and the dog's and their beds have been bathed.  WE ARE READY!!!

Better Day

I have always been a BIG believer in prayer.  I've seen it work so many times with Graham alone, and last night was no different.  I'm sorry for such a downer entry, but I don't want to paint a picture that is just not there.  But thank you, thank you, thank you for all of y'alls kind thoughts and prayers for Graham last night; they have definitely made an impact.  After the Longhorn's beat Tech last night, you could see his mood improve a little (it always makes him feel good to see the Horns win) and we began to tell Jordan stories.  If you have never met her, she is the silliest little girl - she definitely has her Daddy's personality, so the stories are endless.  And by the end of the night, you could tell his spirits were lifted and prayers were answered.
This morning he awoke in a much better mood.  We said more to each other in 5 minutes, then we did the first 3 hours of my visit yesterday.  And he had some humor back...the poor IV Services Nurse kept setting him up for inappropriate comments.  Luckily she had a great sense of humor too, she just laughed and stroked his ego by telling him he's the funniest patient ever. He even attempted "strip tease" music while taking his shirt off so she could change the needle out in his port.  Unfortunately for him, it takes 5 minutes to take off his shirt and you just can't do that seductively.
He's also starting to feel better about his swelling.  Dr. K-part (I have NO CLUE how to spell that man's name, but that's how you say it) is pretty much done with his job, so enter new doctor in charge of his kidneys.  Another amazing doctor with a great personality.  His main job is to keep Graham's kidney functions normal and work on the swelling.  And the more and more he keeps telling Graham that the swelling will go down, the more Graham believes him.  Graham's kidney functions have now been decreasing for 2 straight days that the doctor is now going to see what he can do about the swelling.  They are going to let his kidney's rest one more day, then see if he can handle some diuretics and the doctor's "special trick" through his IV to get the swelling down.
The chest tube is still draining a lot, and chances of it getting pulled tomorrow are slim; but you never know.  Neither of us can wait, as soon as it's pulled, he's home!  Today we have been busy buying things to keep us busy the first couple of weeks.  Even though he does not have his new phone yet, it already has all of it's accessories purchased and ready for pick up - got to love in store pick up!  You buy - so no chasing wild 2 year old through out store, then pick up in store - so no shipping cost!  Then I bought the prettiest Orange Tulip bulbs...ready to be planted for a nice May blooming.  It's nice to be talking about the future again.  We've been stuck in the present for almost a year now.  We are now 99.9% sure that we have a future, and that's an awesome feeling! Thanks again for all of the kind thoughts and uplifting prayers, and please continue; we are so appreciative of them and pray for all of you daily too!

GET HIM OUTTA HERE!

I'm sorry I haven't posted since Sunday.  Graham's Monday and Tuesday were much the same...GREAT GREAT GREAT.  He was so motivated to get out of here, he was walking 10 - 12 laps and even started making a lap or two here and there without his walker!!!  He learned he needed shoes, because he is so weak, he was slipping all over the place - and the socks were not helping.  They quickly put up a "Safety First!  Patient at Risk for Falls" sign on the door.  He was eating good and the dressing on his right side was getting soaked less and less.  Then came Wednesday...
Fairly early in the morning, his nurse for the day noticed his neckline starting to ooze a little.  Red Flag...this could mean infection.  And this is when Graham lost it, and I haven't seen back him since.  The nurse was quick on her feet.  She got the line pulled and sent a swab down to the lab to be tested, hopefully to find something within 24 hours.  It appeared that if it was an infection, it was caught early enough that it shouldn't be too bad of a problem.  But all Graham could think was that if it WAS an infection, this could set him back further, cause him to stay longer, or worse...reject. 
He also needed 2 units of blood on Wednesday.  Guessing just from low blood count, Graham was too out of it to ask - SO not like Graham, he asks about everything that goes into his body.  And his feet began to swell too, this was his first thought that he was a freak.  All he could think of was the post transplant volunteer and how enormous her feet were 6 years after transplant.  He began to think that all this swelling was never going away.
I got here about 5:30 - and I left Mansfield at 4:00, it was NOT a fun drive.  But when I finally got here, he was just staring into space, picking at his hands.  Tried to talk to him, he wouldn't really talk.  His eyes were so swollen, he was so tired.  I convinced him to eat a little (what a night that he decided to try Hummus...of all things???), and he scarfed down a PB&J and a salad (he hadn't eaten since breakfast) and go ahead and walk for the evening, get it over with.  He did about 6 or 7 laps, nothing stellar, but it was something.  When we got back he did his treatments and then he wanted to stand at the sink and get ready for bed.  Bad mistake, this was the first time he got to look at himself, I mean, really look and examine what he looks like.  You could just see the horror in his face, I swear I even saw him tear up.  He didn't say anything, but I was thinking "Oh &*^##, why am I letting him do this?"  He sat back in the chair, and just began picking at himself again...his hands are so dry from all the "germ-x" stuff.  Finally, probably annoyed with all my useless banter, he just says, "I'm a freak" and more about how he looks so bad because of the swelling, and how uncomfortable he is.  I was at a loss for words.  What do you say, "You look SOOO much better" just for him to interpret it wrong?  Or, it'll go away; when it's been a month and he's still retaining so much water, he is literally 2 - 3 times his normal size.  All I could do was tell him how proud I am of him, and that it HAS only been 1 month and you can't expect to be back to normal (or your new normal) yet.  But it wasn't enough.  I got him in bed and left about 9:30. 
I'm back today, Jordan got to come up and see him.  She was soooo excited.  She couldn't even nap, her whole 45 minutes of laying in bed, she was whispering, "Need to nap, go see Daddy" over and over.  So cute!  We pack up and head out and when we got to the part on I-30 where you can see the Dallas Skyline, she started yelling, "Skyscrapers!  Daddy's big buildings, I go to Daddy's hospital!"  and started to dance.  She was so happy once we got in here.  She did get a little uneasy a few times, but for the most part, had a blast.  She was even comparing Daddy's boo boo to hers! 
With all that fun, we only got a smirk out of Graham.  Once she left with her Mimi, all conversation left.  I have never seen him like this, and I don't like it.  He's so down and depressed, I just want to shake him out of it.  Or pinch myself because this CAN'T be happening, not Graham, not the silliest (albeit weirdest at times) man I know.  He finally did say, "This is so much harder than I ever realized."  And left it at that.  We've had small talk, but nothing more.  I really miss my husband, and I agree, this is so much more difficult than I ever imagined too.

WAHOOOOOOOO!

I can't tell you how great it is to sit here and have a somewhat normal conversation with my husband.  Yesterday, Saturday, he was slowly coming around, making small jokes (especially about the size of some of his body parts) and able to look at you for a long period of time.  He's been so doped up with Morphine that all he could do was muster up a few sentences and stare at the walls.  He was telling me that it wasn't until Thursday or Friday that he actually started watching what was on the TV (and this is soooo not Graham).  His pain is still ever present, but he's weaning himself (yes himself) off the drug because he's not a big fan of the side effects.  He's still occasionally taking the drug and a form of Vicodin, but going longer periods of time.
Yesterday morning he also got to say Good-Bye to another chest tube!  It hurt all day yesterday, but he's loving the freedom of no tubes coming out of his left side.  The right side is still draining a lot...they put it back on suction, hope to pull the suction back off of it tomorrow and get the LAST tube pulled by the end of the week AND SEND HIM HOME!!!  I'm so excited.  I'm not getting my hopes up, but cannot wait for him to be healthy enough to come home (and would really love for it to be by next week).
By this morning, he was in full Graham swing!  Sending pics of himself to my brother and his good friend (trying to gross them out), jacking around with the IV Services nurses and giving the poor woman hell about her liking Clint Eastwood (her partner joined in, poor woman), laughing (!!!!!!!), and taking my phone so he could play his beloved Solitaire.  He has been seen by all of his doctors, and they have nothing but good things to say about him.  I even rode down in the elevator with Dr. Rosenblatt, and he still had great things to say - no worries, just smiles.  When his Infectious Diseases Doctor came in, Dr. Hailey, we got a little insight on just how great he was doing.  From the very beginning, they all new this was going to be a very risky surgery with great complications...but it was better than the alternative, die not trying.  He has this bacteria (I think just in his lungs) called Achromobacter that is resistant to most if not all drugs.  This lovely bacteria could (and still can) cause Graham's new lungs to be rejected.  They actually prepared for Graham to already have rejected his lungs.  But he didn't, and they are slowly taking away all the drugs that are to suppress this Achromobater and he still hasn't rejected.  Now they are still watching very closely, but Dr. Hailey is predicting that his new lungs will eventually kick this bacteria out and he will no longer have this problem looming over him.  All the doctors are just still amazed at how Graham is doing.  Dr. Hailey briefly talked about how they were all really nervous, especially his post care doctor (can't spell his name, but he is awesome!), right after surgery when all his numbers and blood pressure were out of whack.
He's off all those horrible laxatives, he's eating well, walking a lot, and able to get in and out of bed better.  He still has a lot of swelling, and he keeps being told "everyone's different."  Well, that's just an answer for, "We have no clue why you're so big, but it's not an issue."  And it goes up and down everyday, but hopefully all this walking and exercising he's doing helps.

Things are looking up....again!

Seems everything is starting to look good again.  For the most part, his levels are all good and lungs look great.  His swelling is still ever present and his chest tubes are still draining a lot, but he feels good.  He gets up and walks 3 times a day, usually 5 or 6 times around the nurses station with only help from his walker (well, if he's hooked up to an IV someone has to drag it, but that's it), he's eating regularly and a descent amount.  No more liquid diet!!!  And each time he eats, he sits up in a chair for a couple of hours.  This is such great news.  I don't know if it's because his mom is relentless (in a good way) and really motivates (he might say force) him to get up and take care of himself.  The physical therapist came in today and Graham tried to plea his case, that he only needs to exercise when she is there.  The PT went on a spree and began listing all the reasons he needs to do what he is doing and more is ALWAYS better.  When she walked out of the room, he looked at his mom and said, "Guess she put me in my place."  I love it when people can do that to him!  He won't get to come home until his tubes are out, and it doesn't look like that will be anytime soon.  But I know he's getting good care, and that's the best place for him.  He just needs to lock all his stuff up!
On that note, Baylor Police and Guest Services are all over his phone being stolen.  Graham's mom and nurse have pretty much pin pointed when it went missing and who might've taken it.  If they don't return his actual phone (guess they're that good) then they will foot the cost of the replacement...such a relief!  They sadly told us that this happens a lot.  Can you believe it???  The people you are supposed to trust with taking care of your life or loved ones, are thieves!  Ugh.  And to make matters more annoying...Graham had the UVerse App on his phone, and I guess before I turned it off, they started recording all this crap on our DVR - and not even remotely interesting stuff. 
Jordan is also doing better.  Not that she understands completely, but I've really been working hard with her and talking about how Daddy is sick and in the hospital, he can't come home until he's better.  Today at school, the teachers let Jordan make a Get Well Card for Daddy.  And she started talking to them telling them how "Daddy is in the hospital, he sick.  He getting better though, and then he can come home."  They were so proud!  They have really taken the brunt of all the crying and fits.  Then one of her little friends comes up to her and asks Jordan about her Daddy.  She repeats the story to her and Harper, her little friend, gives Jordan and hug and says, "I hope your Daddy feel better soon."  The teachers said they all just almost lost it, tears in eyes.  How sweet is that!  Kids may not understand the hard stuff, but they get it in their own way.  And that was so apparent today.

*&^*#%(*#@*$

I had this great intro already planned for my blog...but now all I can think of is this low life SOB that stole Graham's phone from his room.  Seriously, who does that!  And me trying to be Sherlock Holmes (only, I'm really a chicken when it comes to confrontation) have figured out, along with his Mom, he HAD TO HAVE BEEN IN THE ROOM!!!!  They called some number yesterday at 1:30pm...well, he hadn't left the room (remember - bed rest day) since it was used last.  So I called the number, didn't hang up, but listened.  Trying to figure out male or female, accent no accent.  Well, now THEY keep calling me and hanging up.  The dork that I am, have already talked to AT&T and they can't figure out who I am...didn't I say I was a chicken???  I've really lost my touch since working in Inner City Dallas.  So, if you call Graham and it does the little disconnect spill, that is why.  And got to love Barbara, his mom.  She is on top of Baylor like white on rice.  WHO TAKES A SICK MANS PHONE FROM HIS ROOM!!!  And to think, that was his only way to see his little girl :(
Now that is out of my system.  Update...supposedly this is all "relatively normal" but it still makes me sad and frustrated.  His line in his neck was put back in.  Due to swelling and no blood draw from his port, they had no way of drawing blood which is VERY important to make sure all his levels are OK.  His kidney functions are still high, but almost everything else looks better.  White blood cells are almost normal but red cells still low...so he needed a transfusion today.  This is when I almost lost it (and it was just lunch time at school).  And to top it all off (this was before we noticed the phone) doctor thinks he is beginning to get depressed.  Not just in pain and doesn't want to talk, but depressed and doesn't want to do anything.  Graham, as sick as he has been all his life, is the happiest, most upbeat and positive person I know.  It's one of the reasons I fell in love with him.  And for him to come all this way and to get down now, breaks my heart.  I hope he remembers his little girl and continues to fight for her.  He's done soooo well so far.  I KNOW he's not giving up, I don't think he could EVER come to that level; but I want him to continue with his ever positive (sometimes annoying), I'm going to beat this attitude.  It is why we are where we are.

Balancing Act

The Doctors are really earning their money on Graham.  If you just look at the big (really big and broad) picture, he's doing good.  Lungs look great, swelling is down half from surgery, and he's getting stronger everyday.  However, besides his lungs, it's all still bad.  He was easily 4 x his actually size post surgery, so even though the swelling is down, in perspective it still stinks.  And for some reason, his body is REALLY sensitive to all the drugs.  When they tweak one drug, his levels go all crazy and they have to play with all the numbers again.  Today Graham's kidney functions and potassium levels were high, magnesium and blood count was low, and to top it all off...he has a bacteria infection called C-Diff.  This is one of those bacterias that everyone carries, but when the C-Diff levels get too high (typically from high does of antibiotics) it causes severe abdominal pain, lots of fun side effects involving a bathroom, and it's highly contagious to boot!  The poor guy just can't catch a break.  Now, leave it to Graham to find a pro in all of this...the doctors ordered him to rest and stay in bed today.  His mom said he just grinned, he's really been hating exercising and eating lately.  And what a good excuse to not do either - well, he will eat something.  As annoying and somewhat scary as all this is, the doctors still seem very confident and know they can handle all of this.  That is what I'm holding onto.
His chest tubes are still draining a lot and hopefully he can get at least one out by the end of the week.  He has now been transplanted for 2 weeks.  It's crazy to think that we were told he would be home by now or at least by tomorrow.  I'm glad he's at the hospital though, get all this craziness over with before he comes home to Jordan and me.  I do miss him, but I want him healthy too.  On a funny/sad note:  Jordan went around telling all her friends and teachers at school today that her Daddy was home and he was going to pick her up.  It's obvious she really misses her daddy, but am I raising a little fibber who wants attention?  Oh Lord, please no!!!

Medi Port Craziness...and Graham found his Patience

Well, one more wire is gone!  They took out his IV lines from his neck yesterday afternoon and accessed his Medi-Port in his chest.  They were able to do this because he is finally off his 24/7 anti-rejection IV that couldn't be mixed with any other IV drug (he will now take it orally for the rest of his life - pretty sure).  He has had his current Port for about 5 to 6 years now and if anyone has seen him without his shirt, you've seen the Port, it kind of sticks out.  IV services comes in to access it and couldn't find it!  He is so swollen...the lady kept pressing on his chest and Graham's eyes kept bulging out - he was so patient.  She ended up calling another Nurse to help.  They decided on using a 1inch needle instead of a 3/4 inch like he normally uses because of his swelling (come to find out later, they used 3/4 inch????).  After about 30 - 45 minutes, they had his Port accessed and the neck line out.  Ahhh, relief.  He was also excited that he was to stay in bed for 30 minutes and not move.  I was going to make him walk the halls and eat, lucky dog.
But after some rest and lunch, Graham became Star Patient!  He walked for me (5 laps), did his Peak/Flow machine, and took the rest of his Meds.  He earned a well deserved dose of Morphine and a nap.  I woke him up about 7:30pm to start this procedure all over again, but all the Nurses and Respiratory Therapists beat me to it.  So he was hooked up with breathing treatments and IVs and potty breaks for awhile. Well, so we hoped.  His evening Nurse came in to flush his Port and start up another round of IVs and found that he couldn't.  You could see the muscles in the Nurse's arms trying to force the saline through, but it wouldn't go.  Graham informed him that he's always used Heparin or it will clot really fast.  But (falling under the category "you learn something new everyday") you can't use Heparin with post transplant patients...for several reasons dealing with blood - so of course I start getting queasy and begin to ignore.  Well, IV services closes at 7:00 pm, Nurses aren't aloud to access ports, his veins can't hold an IV, AND HIS IVs ARE ALL TIME ORIENTED and there is nooooo line.  So Graham asks for the Charge Nurse, well, his evening Nurse takes it offensively (he's been a Charge Nurse, he can handle it...blah blah blah) but still brings the other Nurse in.  They decide to do an All Call for anyone with the credentials to access a port, and in comes the sweetest, best port accessor, Oncology Nurse (I liked her!) who gets the job done in stellar time (this is where we found out the geniuses before used a 3/4 inch needle) and used Heparin to see if she could get blood draw from it.  It was a no, but it was accessed and stress was over (appetite gone, but IVs were in!). 
When his "Holier than Thou" evening nurse came back in, we asked if he could be hooked up to Saline when no antibiotics were being ran through...oh the look we got!  But he caved - only after stating that he thought of it before us.
Ok, I am a VERY patient person and I was losing it.  If you have met Graham, I'm sure you can only imagine.  But I am so proud of him.  He just kept on taking deep breaths (only turned red faced once) and speaking calmly.  Never once became rude or unpleasant.  He vented after his nurse left, but kept his cool in front of "Nurse of the Year!"
So far today he is having much of the same day as yesterday.  It is becoming very hard for him to eat or swallow because of the swelling and access gas.  But is continuing to walk and move around to try and help it all go away.

Sorry For the Delay...

I'm so sorry I haven't posted in awhile; not only because I want to keep our family, friends, and followers informed, but also because I have started thinking of this as a journal.  One that Graham can eventually read to know what went on, one that I can read to remember how far we have come, and one that Jordan can read many years later so that she knows what her Daddy went through so that he can be a better Daddy.
I went back to work this week thinking that I would be fine...HA!  I am a perfectionist in my classroom about my teaching (not so much about my desk or paperwork for those of you rolling your eyes), I always make sure I put my students first.  Now when my husband is in the hospital not doing well and my daughter is starting to break down, I start to stress and fumble to make it all work.  So again, I'm sorry I haven't called, texted or posted; but my family's life and my job came first.
What a week it's been.  The roller coaster has gone from big peaks and valley's to one of those kiddie coasters that give you whip lash with all the tiny ups and downs.  Come to find out, Graham had an infection or pneumonia in his lungs.  Glad I did not know about that, would have passed out more than once!  Don't ask about the first time, just a little embarrassing.  But everyday his X-Rays keep looking better and better.  Dr. Meyer, his surgeon, came in this morning and talked about just how good they looked - woo hoo!   I did get a glimpse of the X-Ray and I'm curious to know a little more about them.  More to come on that once Dr. Rosenblatt comes in.  His 2 chest tubes are still in.  They are just draining like crazy, but again, the Dr. says it's normal for CF Transplant patients.
The main concern is still his pain and swelling.  Graham has become so much better at taking his pain meds, he's finally succumbed to us telling him...the more comfortable you are the quicker you'll heal and the less it'll hurt to cough.  But now, it seems the narcotics are working against him and causing him to be constipated.  So now, bring on all the nice tasting laxatives...poor guy, just not catching a break.  Then there is the swelling; still there and still annoyingly painful.  It is very difficult for him to bend his arms and feed himself.  And now, it seems to be starting to head south (not move, still ever present in head, arms and chest) down through his thighs.  The worst part is his stomach, his belly is so tight and causing so much pain they are running a series of X-Rays to make sure it is all ok.  So far, today and yesterday's X-Rays were good, nothing seems to be out of the ordinary.  Then one more bump, he's back on oxygen at night.  Now this scared me when I finally got to come see him at 1 am and he has his cannula's back in, but it is due to his snoring that he has because of the swelling in his throat.  WILL THIS SWELLING JUST LEAVE HIM ALONE!!!
I feel so much better now that I get to see my baby and talk to him.  We have never been apart this long without talking...I seem to be saying this a lot about my little family :(  I hate not knowing what is going on with him and if I had to do it all over again, FMLA the entire time!  Then again, there is our little princess that needs her Mommy too.

Getting Sick of These Bad Days!

Healing, with whatever you are healing from, is a roller coaster.  The highs are high, the ups are encouraging, and the lows suck. Graham started decreasing on Friday and just kept going down until his low reached a bottom yesterday.  I felt my heart in my throat and numbness all over (I did have our awesome school nurse check me out - I was a little high, but OK), why are these low days lasting so long!
His pain seemed like it kept increasing.  Even with all the "Good Things" happening (2 chest tubes out, pain IVs out, change of neck line) it still was getting worse and Graham began to get very frustrated.  Then Sunday came with all the nurses that were a few bricks short of a wall.  Seriously, why are you in a profession that is very time oriented and you don't know how to get things done in a timely, orderly manner.
Graham's orders to go upstairs into a regular room came at 11:30, the woman kept making excuses of why he was not moving.  Come to find out, she just didn't know how to do anything.  She kept complaining how busy the ICU was, but since I'd been there everyday for 6 days, I could see over half of the beds were empty, yet they still had the same number of nurses.  Then he gets in his new room, and again, Nurse not the brightest crayon.  But he made it through the night with his Mom's help.  So happy she stayed with him because he kept getting worse.  His swelling went up, pain increased, kidney functions increased and congestion got worse. 
By the next day Dr Rosenblatt wanted to scope him a day early.  His X-Rays did not look so hot.  They found a polyp in his throat - which is causing so much pain when he eats, and several polyps in his lungs.  They took samples of the lung polyps to have them biopsied and suctioned out his lungs.  Dr. ordered more Physical Therapy and made sure he was on a Mechanical Soft Diet to help him eat.  They said they would play around with his meds again to get his kidney functions to lower.  So good thing, they are working really hard with getting his insides to work well.  But his swelling is getting worse and even his eyelids began to swell again; therefore he can't feed himself.  So his Mom stayed another night.
Good reports from his Mom today.  Today's X-Ray came back looking great and his Rejection Test came back negative...hopefully this means things are starting to look up again.  He walked several laps around the 10th floor and was able to eat most of his breakfast!  I can't wait to see him tonight, I haven't seen or spoken to him since Sunday.  He's too tired to talk on the phone and our sweet little girl is starting to take all this no parent stuff hard.  She just doesn't understand why she can't see her Mommy and Daddy.  Her teacher's at school said she cried a lot of the day for us yesterday.  When I went to pick her up, she asked if she could go to Daddy's hospital to see him.  BROKE MY HEART!  So we went to eat ice cream and then had a playdate with her best friend.  It helped tremendously...today she only cried a little in the morning and didn't cry when I left her at her school.  Hopefully I get a good report from her teachers today.  Looking forward to no more pain in my family.

Rough Days, but out of ICU

It's easy to get frustrated that he's still in A LOT of pain...then you have to step back and think, it was ONLY 5 days ago that he had the riskiest surgery out there.  Today some of the nurses were questioning the quantity of his pain meds (and little wife almost went off, but I contained myself - I'm proud) and the surgeon said it best to them, "Hello, he just had a double lung transplant.  I wrote the orders, give it to him."  He's had a rough few days, and I know that it is to be expected, but it is so hard to see him in pain and feeling absolutely miserable.  If you know Graham, he, for the most part, hates relying on people.  He has forced himself to rely on me, but feels guilty when he involves others.  He'll go without eating or will just watch the chic flick on the TV just so he doesn't have to ask the nurse to do one more thing.  I'm slowly changing his thinking, because he HAS to rely on others, HE CAN'T MOVE!!!
But through all the pain, he still continues to progress.  He had 2 of his chest tubes taken out today.  Dr Meyer, the surgeon, came in and did a few snips of the sutchers and told him to breathe in and out twice then hold his breath and push...THEN HE YANKED THE FIRST ONE OUT!  Graham held onto my hand so tight out of nervousness!  Then the 2nd one was pulled, and barely a grip.  Dr. Meyer looked at him and said, "People normally squeal."  I told you, Graham IS NOT normal.  Such a fighter!
He also removed his Litocaine packs that were topical pain meds connected right under his skin.  Slowly but surely he is losing all of his tubing.  Yesterday, another doctor changed out his IVs in his neck.  Reduced it from 6 (or so) lines down to 3.  The more they remove, the better he feels.  His swelling is up in his arms and is back down to not being able to feed himself.  But that's what I'm here for, and will be there for him until the end.
Graham also got moved up into a regular room today...that helps him out BIG TIME mentally.  Nothing like a change in environment.  It's also quieter, maybe he can finally get some rest.

Not a Good Day

I was starting to think everything was going too well.  After the big day Graham had yesterday, I knew he would feel bad, but not this bad.  He was unable to get good sleep last night and by the morning, he asked to be moved to the chair so he could sit up.  Every part of his body ached and his chest tubes were causing a lot of pain. He tried some pain killers, but it didn't even touch the tip of the iceberg (he did not get that pretty little morphine button).  He got to eat some breakfast, but soon found out his throat was rubbed raw from the Ventilator and could eat eggs and potatoes but nothing else, grits even hurt too bad.  He also need to work on coughing up all the junk from his lungs (old blood and fluids from the surgery).  Not only did it hurt like $#&&, it was hard for him to figure it out.  To be able to remove old lungs, nerves need to be cut to get to them, and it just so happens, the nerves that tell us to cough, Graham no longer has.  So he has to train him self to cough every 15 - 20 minutes just in case something is there.  Well, something is there and he can feel it, he just can't figure out how to get it out.  He did so good at trying, but it just never seemed to get out.  This frustrated him so bad.
Noon time, things started to look up.  For lunch I was able to go to the Hospital Atrium (cafeteria) and got him some soup and banana pudding, he could eat this and was even able to get a few good coughs out.  And in no time, coughed stuff up.  Won't even describe it, it was gross, but felt ohhhh sooo good!  He had been sitting up for about 6 hours and was starting to get tired.  He tried to take a cat nap, but again, could not get comfortable.  Physical Therapy came by and had him do some leg exercise, but nothing else - like walking.  By 5 o'clock, he'd been sitting up for 10 hours and was EXHAUSTED.  He got his dressings changed, clean bed, and a nice shot of well deserved morphine.  I felt I was leaving him comfortable and felt ok to go home and see our little girl.  I was a little anxious, but felt he ended the day well enough.
It was so good seeing Jordan.  I never ONCE felt guilty for being gone, her babysitter Krista took such good care of her.  I don't think I'll ever be able to thank her enough!  I had enough time to play with her and then off to bed. 
I called Graham before I crashed for the night, and it appears things went south since I left.  He is out right miserable.  He feels guilty for relying on people.  He can't feed himself, he has to ask to have the channel changed, he hates to ask to be moved and the cherry on top...Dr. Roseblatt was a little riffed that he did not walk today.  COMPLETELY PT's fault!  I was there when she said no walking when Graham was clearly OK with doing it.  So, as I type, my poor husband is sitting in his chair, uncomfortable, feeling guilty and miserable, waiting for PT to come by and walk him.  When all he wants to to is go to sleep and have today over.  Think I'll be back all day again tomorrow (I had only planned the evening), because I do not feel comfortable leaving him like this!

Chest Tubes, Food, and TONS of Meds

To help with all the drainage from his surgery, Graham has 4 chest tubes coming out of his side. Two on the right and two on the left side.  These are a somewhere between 1/2 inch to inch in diameter (never been good at estimating measurement) and are sewn into his side.  They hurt!  All his doctors and nurses have confirmed that they are the most painful part of the whole thing.  Anytime he moves, he puts pressure on them and you can just see his brow crunch up and his toes start to wiggle in pain.  Unfortunately for him, since he was so bad off prior to transplant, and had such horrible lungs, these tubes are going to stay with him longer than average.  Introduce Morphine pump.  Graham has never been one to take unnecessary meds.  He figures that he puts so much into his system already, why mess up his kidneys any more.  However, when the doctor began talking about this button he can press and all worries of pain would go away, I swear twinkle lights started blinking around him.  I have not been down to see if he actually has received this great pain reliever, but I hope he has.  Less pain, less stress, quicker recovery.
A funny side note.  Graham has a prized tattoo.  He'll show a complete stranger in the grocery store (and I thought my kid was going to embarrass me in life).  It's a copy of the wheelchair guy you see in parking lots, handicap placards, and for the past few years, Graham's chest.  I've actually become to really like it too, it's part of who he is.  Well, when the surgeon drew the lines across his chest (if you're wondering...it is a clam shell incision that goes from the right under his arm all the way to the left, about an inch - for the lack of a better word - under his nipples) he drew right though the tattoo.  One of the nurses working during the surgery was like, Oh No Dr. Meyer, you can't ruin a perfectly good tattoo like that!  Can you not move it down just a tad.  And though he might never admit it, this man became Graham's best friend.  Haha!
Graham's nurse yesterday was great.  Even though Dr. Rosenblatt said only a few ice chips, she brought him a big ol glass of ice water.  Best tasting water he's ever had!  He finished it in record time.  And because of this, the Dr. saw how well he could handle fluids he worked himself up to cheese and chocolate ice cream last night...sounds like a pregnant woman's favorite meal huh?  He savored every bite.  Graham even said, I don't remember Blue Bell cups tasting that good.  He's such a funny guy. 
And here come all the rejection meds.  To get in to see Graham, you have to garb up.  I was just putting on the finishing touches when someone from pharmacy comes up and tells me, "I'm putting Bed 8's Chemo in the fridge for later." Me: "WHAT?????"  So the woman just kindly repeats herself.  Luckily, another nurse walks up at that moment and sees the horror in my face and explains to her that I'm the wife and have no clue what meds she's talking about.  Then turns to me and explains that it is his immune suppressant drugs that Cancer patients also take so those in the medical world just refer to them as "Chemo."  Thank GOD for her, hyperventilation might have set in REALLY quick.
They have a few more things they are monitoring...kidney functions, how his diaphragm is working, and getting all his meds on a good schedule.  But hopefully he will be moved out of ICU today or tomorrow.  I am so proud of my husband, he has really fought a battle this week and worked a miracle!

The Vent is Gone!!!

What an AMAZING morning.  Just when you think things can't get better, they do!  I get down to his room at the 6:15 visit wearing my PJs thinking I'll see him and then go get clothes on.  Noooooo. He had just started his breathing tests to see if he would be able to breathe on his own.  He rocked it!  And by 7:30 am the orders were in to take out his Ventilator.  Well of course we are on "Hospital Time" and we had several hours before all that actually happened.  During these last few quiet hours, Graham was very agitated and anxious.  He kept wanting things, we couldn't understand him, and he was getting so frustrated and angry.  It was so hard and frustrating to not be able to help him.  His writing got larger, his brow furrowed tighter, and at times his head was so purple I thought it was going to pop. 
Then finally Dr. Rosenblatt, his doctor, came back and EVERYTHING changed.  He and Graham have the best relationship.  Graham trusts him 100% and you could see the relief in his eyes when he saw his Dr. show up.  He even got impatient while Rosenblatt was reading up on him.  But whatever Rosenblatt said, Graham did.  Graham became calmer and took everything in stride.  He was scoped, without any pain meds, and didn't wince once - he's such a trooper!  The average person is put under he sedation.  The scope was really cool to watch.  And if you know me, you'd be really proud, I didn't get weak or faint once!  We go to see both lungs on the inside and where the sutchers were connecting his body to the new lungs.  Everything looked great and the Dr was very pleased.  He took a few pictures and not 10 minutes later told Graham to cough and the Vent was out.  Then 2 more minutes went by and his feeding tube was pulled.  One by one we got to see all the big machines leave the room.  What a relief.  All that practicing breathing yesterday paid off.  He started off slow at first, but after 15 minutes he was a pro.  When I asked him how it felt all he could say was "Weird!"  The poor guy hasn't breathed like that EVER!
And now that there is no tape or tubes preventing him to talk, he has NOT SHUT UP!  And it is awesome, he is already making us laugh again.  First off, what was making him so angry all this week was all of his hallucinations from the morphine.  He swore his bed could slide up and down and that there was a couch with all his friends on it.  He was a little irritated at his friends for not talking to him.  Then there were the random short people at the foot of his bed he could barely see.  He kept asking to have his bed lowered and was frustrated these people couldn't see over it.  Now he thinks it is all hilarious and I feel better that I was doing all I could do. 
He has now walked a little and is sitting up in a chair.  Anyone who walks in the room gets to hear about how he can't wait to play and run with his little girl.  I'm still in shock at how flipping cool and amazing this is.  Just this Sunday he couldn't make it from the bedroom to the kitchen and now he has a new set of lungs and talking about running.  What a miracle, the worst is finally over!

Learning to Breathe Again

Graham is still continuing to amaze the Doctors and Nurses and is doing AWESOME!  The poor guy doesn't feel like it though.  He feels he is failing at it and not progressing.  We keep telling him how well he is doing and how far ahead he is than what doctors predicted.  Swelling in his face is WAAAAAAAY down.  He is recognizable now and he is able to open his eyes.  Everything is really blurry, he says worse than if he were to not be wearing his glasses (his eyes are still a little swollen). But he can recognize us and waves to us as we garb up looking like Sponge Bob.
He is finally off all of his blood pressure meds and maintaining normal BP (I'm starting to learn more medical lingo).  Graham is also being weened off of his Ventilator...this is sooooo hard for him!  He wanted me by his side when they did this and I was way too happy to oblige, I really needed him at that moment too.  They moved his Vent Pressure down from 25 to 20 - what this means, at 25 the vent is doing all the work, when they start lowering the pressure, Graham is having to do more and more breathing by himself. So many emotions were going through Graham; he was nervous, anxious, and scared.  He had to really concentrate on learning to breathe all over again.  It has been decades since he has been able to fill his lungs with oxygen or take a deep breath and not cough afterwards.  With a lot of encouragement, silence, and concentration he began to figure it out.  I know I will never understand what he was going through, but I felt so bad for him.  But he did it!  After 6 minutes he was able to find a good pattern.  Inhaling was very difficult for him and he would get a little frustrated and I would need to remind him to breathe or that he was doing great.  After about 45 minutes, he could go longer without a slip up.  He still had to concentrate on inhale...exhale...inhale...exhale, but he was doing it.  I felt comfortable enough to leave for 30 minutes and when I came back Kristen told me that he even fell asleep and was breathing great!!!!
They continued to ween him throughout the day and every time they went down, he struggled.  The tubes are very irritating to him, he feels like there is mucus in his lungs and it's as if (well, he is) breathing through a straw.  Even though nothing is wrong, his numbers on the vent looked great - better than average, he felt like he should be breathing perfectly. His Respiratory Therapist didn't help either, he showed her his number 1 finger...some people just don't have bedside manner.  Don't be gruff with a patient, I almost jumped down her throat.  If she's back tomorrow, I'm asking for another!  But he did it!  By the end of the day, he had gone from 25 to 10 and was even aloud to rest.  I haven't seen him since 4:30, but can't really complain, I got to spend all day with him (that's a little against the rules, but to peas the patient!!!).  His anxiety is supposedly better (it was so bad they had to slow down the weening and it's also the reason they let me stay) and the plan is to move him to 5 really early tomorrow morning and then down to 0 mid morning so they can remove the vent early and he can have a good day!!! 
I'm so excited for him, he is continuing to be a rock star with VERY LITTLE complaining.  He had his first Physical Therapy today and he did well with it.  It was simple leg lifts and arm lifts, but he fought through them well.  Hopefully tomorrow they'll put him in a chair to sit!
Thank you all for your sweet messages, they really make me feel better.  Y'all are too sweet!  More later :) -Erin

He's Not Normal

Well, day 1 is over and everything is looking up. The doctors struggled with Graham's blood pressure throughout the entire surgery and was a big concern once it ended. He is slowly being weened off all of his blood pressure meds and as of now (8/25/10) he is only on 1 of the 3 and a really low dose of it. AND his blood pressure is staying normal!!!
If you don't know Graham, the child ain't normal. And I love him that way. On our first visit in the ICU his precious, precious nurse Kristen's first words to me were "He's not Normal.  Most transplant patients sleep, he's awake and alert." Now, with all the stress and anxiousness of the morning all I could do was start laughing and crying. Because, he isn't normal!
He is such a fighter. He is having to do all this with low doses of sedatives - which means he's awake and feeling most of the pain. He does get some Morphine, but not enough. I feel so bad for him. But luckily he won't remember most of it. He communicates well, and getting frustrated that he can't talk. He can nod, point and spell with his fingers. He squeezes my hand and my heart flutters. By the end of the day we had perfected communication. It is a combination of spelling and yes/no questions.
The amazing Husband/Head of House that he is...one of the first questions he had: Did I call his Insurance/Disability lady and have I handled my FMLA paperwork.  He then began to ask about all his friends and family.  Have I kept them up to date, do they know what's going on, how is his Miss Jordan.  It was so awesome to know that he was still Graham and with it.  He even started joking around with us (yes, he still knows one form of sign language!!!). 
He is moving forward, that is so great!  He is really doing his part and fighting hard.  He may be moving in baby steps, but at least they are in the right direction.
Thanks again for all your kind thoughts and prayers.  They are being answered and everything is working out!  Hope to post again at the end of the day.  -Erin

Third Times a Charm

Inconvenience...that's what we've been waiting on.  Each time we have been called this past summer it has been "perfect timing."  I was home for the summer, Jordan's babysitter has been available, it was during the day (no rush hour traffic) and all our parents were readily available.  We had time to call all our family and some friends, had time to sit and chat, and had time to hug on our little princess.  NOT THIS TIME! 

8-23-2010
A very busy day.  Jordan, Erin, and Suzi (Erin's mom) were in their first day of school and Barbara (Graham's mom) was in the dental chair with a mouth full of Novacaine being worked on by Bob (Erin's Dad).  Graham had just spoken with the Ford dealership (big mess up on trade in of lease) and ordered a very expensive new drug that was going to revolutionize his breathing.  Oh, and his Doctor is out of town until Wednesday!

3:45
Graham gets called - OMG. We all start running around like a chicken with our heads cut off.  Graham was able to cancel the new drug.  Bob was able to finish up on Barbara so she could pick up Graham and Bob could go get packed with Suzi.  And Erin rushed to get Jordan from School, play with Graham then rush off to sign paper work in Fort Worth at the dealership (not a fan of Ford Lease at the moment). 
All and all, we all got where we were supposed to go.  8:30pm we find out that it was all a go and 2:30 am would be the start time.  What a whirl wind.

Go Time
If you know Graham, he is an amazingly funny man who is all about the jokes.  Someone from the OR comes up to bathe him...a man.  Poor Man.  Graham starts in on him immediately.  He strikes a pose.  The OR guy begins to bathe him and Graham immediately "Don't touch me there you're not my Daddy."  Without skipping a beat OR man replies, "How do you know?"  Let the games begin, he found his match.  They came and got him about 1:15 am and everything started to sink in.  It's going to happen.  We sat down in the OR for about 15 minutes.  His close friend Jacob made it in the knick of time (made Graham's night!) to say Good Luck.  He did really know what to feel.  He was scared, excited, nervous, scared, scared, scared!  But this is what we've been waiting for.  Surgery started at 3:29 am.  Everything went smoothly.  He was so strong!  They took his right lung out and his left lung was able to sustain his breathing while they implanted the right.  They DID NOT expect that!  Once the right was done, they started on the left.  They struggled with his blood pressure the entire time; his upper, systolic number was 60 (regularly 120).  This slowed him down a little towards the end of the surgery, but he was in the 80s by the time he went into ICU at 11:20.  HE IS SUCH A FIGHTER!  He kept amazing his surgeon and doctor.  More to come on his progress soon.