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.