Please be a Nipple

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

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

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

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

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

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

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

Magic Johnston

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

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

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


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

Suck it CF!

HAPPY BIRTHDAY TO GRAHAM!!! 

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

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

Happy Birthday to my best friend and soul mate!

Moving Mountains

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

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

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

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

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

Home Again!

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

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

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

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

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

Negative Cultures

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

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

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

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

Hopefully at Rock Bottom

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

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

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

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

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

The Hail Mary

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

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

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

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

It's Getting Ugly

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

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

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

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