He made it...Graham made it out of the week (or so) that insurance would give him at Baylor. At first, we did not believe he would. Now he has to move again to another long term facility. He will be going to the same namesake as the previous place. We have been told it is different, they are better and more equipped to handle a patient like Graham. We have been "promised" again that they have all meds, equipment, employees skilled in transplant patients, and that they know we are coming. But to me, it's like if you buy a Chevy and it turns out to be a lemon - do you buy another Chevy or go to a Ford? I get it, they are not all the same...but do you chance life?
We have no choice. I went to take a tour and all worried questions went away, but the sick feeling in the pit of my stomach still remains. They do seem to have a better grip on patients like Graham. And we learned this is where Graham was SUPPOSED to go first. Why were we never told? We would have NEVER chanced experience vs experiment. NEVER! The drive will NEVER be a factor when it comes to a loved ones life. The move is supposed to occur tomorrow - Wednesday. We wanted to make sure to get in 2 photo treatments just in case they cannot provide a mobile unit. If they have to transfer him to and from Baylor for photo, I do not believe he will make it. Moving him is too difficult now.
Graham's health has greatly declined since returning to Baylor. After the Honeymoon of our return faded, his humor has too. Well, his verbal humor. He still likes to flaunt his boob pillow (or as some have referred to them as his "Moobs") and he'll press Wolfie's howling button. This is the stuffed animal Jordy has given him to help comfort him. His smiles are gone again, his jokes have disappeared, however his comfort and mental state are still good. And this is what is so important. No one should die miserable, especially a man that provided so much joy and life to others.
The transfer tomorrow scares me. Just going down to photo within the same building is hard enough on Graham. Now moving him in an ambulance to a new place with a scary name...I am worried he won't make it. Please pray the transfer goes smoothly, he recovers from the stress quickly, and they are sufficiently able to keep him comfortable in his remaining days.
Tuesday, June 28, 2016
I'm Full of It...
...bull shit that is. But only to one question (because lying is one of my BIGGEST pet peeves). Are you OK? I tell you "yes", or "I'm fine", or "I'm here." I don't dare tell you the truth. Whether it be my Texan coming out in me, or that I'm afraid to admit the truth, or that I don't want you to worry about me. Because this is not about me - it's about Graham and then Jordan. They need your thoughts more than I do.
I'm not OK and no amount of Zoloft will fix it right now. Graham is more than just my bestfriend. We have this bond that is unbreakable. We are the Yin to each other's Yang, the Peanut Butter to the Chocolate (and Jordy is now the Banana - PERFECT snack)! In the beginning of our relationship we irritated a lot of friends. Because we did find the perfect person for each other...we stopped being the life of the party and began to just hang with each other, becoming home bodies that neither of us are. We opted to stay in and just be together (which we still choose many times to this day). It took us a few years, but we made it back out into the world and took it by storm. We have found the perfect balance of social fun, family fun, and couple time. Our goal was to make as many wonderful memories as we could. And I am about to lose him.
I'm also making crap up when I tell you it's better for us because we have had 15 years to plan for this. That we always knew this day would come. I can tell you that this scenario was WAY worse than something coming out of no where. We have had 15 years of death looming over us. Where anyone can get in a wreck and die that day and leave a widow - we had a guarantee that I would become a widow, a single parent, and Jordy would grow up without a Daddy. It is why we would go out and make as many memories as we could. Because we had to.
I am scared. I am scared of being without him. I am scared I won't be strong enough for Jordan. I am scared that I will fail my promise that we will be OK. I am scared I will shut down and not be able to crawl out of the darkness. I pray that I will be able to conquer all of this...but what if? Will my heart ever be healed after this inevitable breaking? At least I know I will have one strong Angel up in Heaven helping me along.
I'm not OK and no amount of Zoloft will fix it right now. Graham is more than just my bestfriend. We have this bond that is unbreakable. We are the Yin to each other's Yang, the Peanut Butter to the Chocolate (and Jordy is now the Banana - PERFECT snack)! In the beginning of our relationship we irritated a lot of friends. Because we did find the perfect person for each other...we stopped being the life of the party and began to just hang with each other, becoming home bodies that neither of us are. We opted to stay in and just be together (which we still choose many times to this day). It took us a few years, but we made it back out into the world and took it by storm. We have found the perfect balance of social fun, family fun, and couple time. Our goal was to make as many wonderful memories as we could. And I am about to lose him.
I'm also making crap up when I tell you it's better for us because we have had 15 years to plan for this. That we always knew this day would come. I can tell you that this scenario was WAY worse than something coming out of no where. We have had 15 years of death looming over us. Where anyone can get in a wreck and die that day and leave a widow - we had a guarantee that I would become a widow, a single parent, and Jordy would grow up without a Daddy. It is why we would go out and make as many memories as we could. Because we had to.
I am scared. I am scared of being without him. I am scared I won't be strong enough for Jordan. I am scared that I will fail my promise that we will be OK. I am scared I will shut down and not be able to crawl out of the darkness. I pray that I will be able to conquer all of this...but what if? Will my heart ever be healed after this inevitable breaking? At least I know I will have one strong Angel up in Heaven helping me along.
Thursday, June 23, 2016
Bittersweet
Do you ever have something you don't want to say or write because it makes it real? This is it...it's what has always loomed around the corner from us that we have been trying to run away from. It's what Graham has VERY successfully won each battle and fought with all his might. But the War could never have been won - is this too many analogies? I can keep going...keep stalling.
Photopheresis was a big problem at our "long term facility." A mobile unit was supposed to come to Graham, 2 days a week, every other week. But the dang machine kept breaking...we have the WORST luck with stuff. And since this is the treatment that we credit to saving his life, it's kind of important. So the next step was to transfer him to the Apheresis Lab at Baylor (!!!!! we soooo miss those lovely ladies!!!!). Though it was highly concerning for me. When Graham's health was somewhat better, this was a difficult procedure and he needed several days to recuperate. And now with his health so much worse and the ride in an ambulance with NO SHOCK SYSTEM, I was afraid he wouldn't make it.
He made it through treatment and Dr. Rosenblatt came to see him afterwards. Within minutes, Rosenblatt had to pull his mother and me to the side. Because of his high CO2, his body is starting to shut down. He will admit him into Baylor under Hospice Care to make sure that he is comfortable in his remaining days. It still hurts to write.
We were welcomed back to our 2nd home with open arms, not going to lie - we both needed it. Casanova worked his pill magic and within an hour both headache and nausea were gone. And Graham was back! I even had to bring the Boob pillow back up the next day. Friday, back in the comforts of "home" and back in our non-bar but everyone knows are name place, Graham's stress level dropped drastically. And not just glimpses of Graham have returned, but GRAHAM has returned! And the jokes have not stopped. Be warned if and when you come to see him, the jokes are HIGHLY inappropriate - but awesome at the same time. If these are his final days, I am so glad that I get to be with the jokester that I fell in love with 15 years ago. His body is still continuing to decline...his shakes have become almost convulsions at times; he will fall asleep mid-sentence or mid-Yahtzee roll; and he has been repeating himself more than usual. How this man still continues to entertain the masses amazes me!
Photopheresis was a big problem at our "long term facility." A mobile unit was supposed to come to Graham, 2 days a week, every other week. But the dang machine kept breaking...we have the WORST luck with stuff. And since this is the treatment that we credit to saving his life, it's kind of important. So the next step was to transfer him to the Apheresis Lab at Baylor (!!!!! we soooo miss those lovely ladies!!!!). Though it was highly concerning for me. When Graham's health was somewhat better, this was a difficult procedure and he needed several days to recuperate. And now with his health so much worse and the ride in an ambulance with NO SHOCK SYSTEM, I was afraid he wouldn't make it.
And he almost didn't. By the time we arrived in the Apheresis Lab at Baylor, Graham was extremely nauseous, massive headache, beat red and couldn't stop throwing up. Even during treatment. Now, I'm no rocket scientist, but if blood were being continuously removed from your
body, should you be bright red???
He made it through treatment and Dr. Rosenblatt came to see him afterwards. Within minutes, Rosenblatt had to pull his mother and me to the side. Because of his high CO2, his body is starting to shut down. He will admit him into Baylor under Hospice Care to make sure that he is comfortable in his remaining days. It still hurts to write.
We were welcomed back to our 2nd home with open arms, not going to lie - we both needed it. Casanova worked his pill magic and within an hour both headache and nausea were gone. And Graham was back! I even had to bring the Boob pillow back up the next day. Friday, back in the comforts of "home" and back in our non-bar but everyone knows are name place, Graham's stress level dropped drastically. And not just glimpses of Graham have returned, but GRAHAM has returned! And the jokes have not stopped. Be warned if and when you come to see him, the jokes are HIGHLY inappropriate - but awesome at the same time. If these are his final days, I am so glad that I get to be with the jokester that I fell in love with 15 years ago. His body is still continuing to decline...his shakes have become almost convulsions at times; he will fall asleep mid-sentence or mid-Yahtzee roll; and he has been repeating himself more than usual. How this man still continues to entertain the masses amazes me!
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| This is an old picture of the boobs - Graham no longer looks like this, but he is just as cute! |
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| This board just kept getting more and more graffitied up...all the lil' men at the bottom are even decorated :) |
CO2...and we thought it was bad in the Fall!
Graham's headaches and nausea had been coming back, so another ABG (arterial blood gas) was ordered. Back in the fall when he was having so many problems, his CO2 measured around 50...this time, at 70. Poisoning levels (there's a word for that) begin at 75, so he is obviously beginning the effects of CO2 poisoning. Headaches, nausea, heart aches...and faded memory. Graham's favorite thing about himself is his mind (memory, wits, and smarts); he's struggling with not being able to be on his toes at all times.
There is not much they can do at this place and Graham is staying on his Trilogy most of the time. Hoping this helps shave down that CO2 number.
***This happened 2 weeks prior to Father's Day***
There is not much they can do at this place and Graham is staying on his Trilogy most of the time. Hoping this helps shave down that CO2 number.
***This happened 2 weeks prior to Father's Day***
Tuesday, June 21, 2016
Happy Father's Day
Our (most likely) last Father's Day with Graham could have been sad, depressing, emotional...D) all of the above; but it went down as the best, most memorable Father's Day EVER!
Graham is back at Baylor - more on that to come - and since Friday night, Jordy has opted to spend the night with her Daddy. And since there is no room at the Inn for the Mommy, I got to go home and sleep in my own bed, and spoon the dog! It was a win, win, WIN, situation on all accounts. The first morning, I was too anxious that she would drive Graham insane and I was up in the room before either Sleeping Beauty arrived. 2nd morning, I waited...and waited....then about 10am I finally caved to see how it was going. In Grahams words, "fantastic, awesome, she's being so good." And this was Father's Day...she had plans. A dear friend gave her an art canvas with colors - each color meaning something different to remember her Daddy by. Another friend gave us the idea to paint hands; therefore she could hold Daddy's hand anytime she wanted (yep - sentimental bawling happen a lot with this one). Jordy had big plans to complete this today. We have some finishing touches to make on the project but it turned out perfect. It brings tears to my eyes every time I see it or think of it.
The 2 of them needed this weekend. Graham needed it to feel complete and Jordy needed it to build memories. Another slumber party is planned for tonight. This just might be the night I run home and bawl my eyes out. As Jordy and I keep saying, "Our life sucks right now, and by golly, it's OK that we break down ever so often."
Please pray for our Jay...she is having to be too strong for an 8 year old.
Graham is back at Baylor - more on that to come - and since Friday night, Jordy has opted to spend the night with her Daddy. And since there is no room at the Inn for the Mommy, I got to go home and sleep in my own bed, and spoon the dog! It was a win, win, WIN, situation on all accounts. The first morning, I was too anxious that she would drive Graham insane and I was up in the room before either Sleeping Beauty arrived. 2nd morning, I waited...and waited....then about 10am I finally caved to see how it was going. In Grahams words, "fantastic, awesome, she's being so good." And this was Father's Day...she had plans. A dear friend gave her an art canvas with colors - each color meaning something different to remember her Daddy by. Another friend gave us the idea to paint hands; therefore she could hold Daddy's hand anytime she wanted (yep - sentimental bawling happen a lot with this one). Jordy had big plans to complete this today. We have some finishing touches to make on the project but it turned out perfect. It brings tears to my eyes every time I see it or think of it.
The 2 of them needed this weekend. Graham needed it to feel complete and Jordy needed it to build memories. Another slumber party is planned for tonight. This just might be the night I run home and bawl my eyes out. As Jordy and I keep saying, "Our life sucks right now, and by golly, it's OK that we break down ever so often."
Please pray for our Jay...she is having to be too strong for an 8 year old.
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| HAPPY FATHER'S DAY TO THE BEST DADDY WE COULD HAVE EVER DREAMED OF!!! |
Wednesday, June 15, 2016
W.T.F.
So our new home brochure arrived...and there are no words. I mean, we knew this was coming and we have joked about it several times. But once we received the book and looked through it and the youngest "model" in there is pushing 85 we looked at each other, said "What the Fuck," and began laughing hysterically. The fact that they no longer refer to it as a Nursing Home but Skilled Nursing Facility means absolutely nothing. It still is what it is, a Nursing Home. And my memories of these joints come from when I was a kid and our church youth group would go and sing Christmas Carols to the residents of these said places. No one forgets the smells...the smells are a bad mixture of gross food and diapers. I keep being told that the new places are much nicer...we will see.
Graham is excited about BINGO; I on the other hand will find it odd going to these places and scoping them out. It's like a messed up Open House. I can only imagine that I will be referred to as his daughter as I have multiple times here at our current home. I just laugh. Maybe once, just once, I'll go with it. There are still hoops and ladders to go through, because in our life, NOTHING is easy and it always comes with a hitch. Photopheresis being the big hitch...no one will likely transport him to Baylor which is one of the only places to get it done. Apparently the promise of portable Photopheresis was a slight crock...it can't be done, and he has only had 1 1/2 treatments in the month he has been here.
Friday, June 10, 2016
Awkward Talk
If you know us, you know that we don't do serious very well. We can, and will, but only when there is a time and place. And if you don't know us - this might explain some weird conversations that we have had with you. I'm sorry, kind of. So with a new, non-depressing, perspective....Graham felt this was a good time to talk about the Big Elephant in the room. The Funeral. Yep - I lost it. He saw my awesome crying skills - snot, red/swollen face, gasping for air...and then he held me. This is not normal for him...my ugly crying typically scares him and he hates snot, so he rarely does this, but he did now. I knew I had to suck it up and I'm glad I did.
Now, I have not been privy to many funeral plans - like 0, so I don't necessarily have a good grasp on what they are to be like, but I can only assume they are not funny. This one was...in true Graham fashion. I will not divulge any specifics that we spoke of - because he wants everyone to have one last laugh from him, so it needs to be a surprise. I will say, pray for me when I go and speak with the Funeral home and that I will not be kicked out because of some of the odd requests I will have.
Now, I have not been privy to many funeral plans - like 0, so I don't necessarily have a good grasp on what they are to be like, but I can only assume they are not funny. This one was...in true Graham fashion. I will not divulge any specifics that we spoke of - because he wants everyone to have one last laugh from him, so it needs to be a surprise. I will say, pray for me when I go and speak with the Funeral home and that I will not be kicked out because of some of the odd requests I will have.
Outside
In honor of the many talks the Director has had with Graham (as a friend and former Coordinator, NOT director of the facility), she wants to get him out into the BEAUTIFUL courtyard they have here. AND HOLY COW! HE'S UP FOR IT! She attempted on Tuesday, but soon found it to be a BIG ordeal and Graham's anxiety began to shoot through the roof. So on Wednesday, we all went for it. It took 35 minutes to get him prepped and ready with the correct O2 (he needed 3 full bottles), wheel chair, and enough people to help him out. We were like a slow moving train. Car #1 = door holder; Car #2 = passenger; Car #3 = pusher of passenger; Car#4 = pusher of O2 (which is A LOT bigger than the standard O2, think IV poll that looks like a rocket). But it was awesome and worth it.
Besides ambulance rides, Graham has not been outside in about 6 weeks. And he has not been outside to sit since April. Of course we chose the hottest day to do this, but it didn't matter to Graham. He needed it. His spirits were already lifting slightly and this sped the lift up! We were only out there for 20 minutes (enough for 1 tank to almost drain); but it was the best 20 minutes he's had in a very long time. We talked - an not about what I need to do when he passes. We did some ol' fashion bullshittin'...then...he even began coaching me on how I need to fix up the yard! He did finally admit the biggest thing he hates. He will never see Jordan play soccer "live" again, and this is something I can't fix. The Camcorder just does not do the trick with this one.
While he was out, I had them change his bed sheets. I later went and bought him new jammies, and bathed him. Vitamin D + Cleanliness = comfort and happiness.
Besides ambulance rides, Graham has not been outside in about 6 weeks. And he has not been outside to sit since April. Of course we chose the hottest day to do this, but it didn't matter to Graham. He needed it. His spirits were already lifting slightly and this sped the lift up! We were only out there for 20 minutes (enough for 1 tank to almost drain); but it was the best 20 minutes he's had in a very long time. We talked - an not about what I need to do when he passes. We did some ol' fashion bullshittin'...then...he even began coaching me on how I need to fix up the yard! He did finally admit the biggest thing he hates. He will never see Jordan play soccer "live" again, and this is something I can't fix. The Camcorder just does not do the trick with this one.
While he was out, I had them change his bed sheets. I later went and bought him new jammies, and bathed him. Vitamin D + Cleanliness = comfort and happiness.
Why Me?
With Graham beginning to miss some key events in Jordy's life (field day, talent show, awards day, soccer tournaments), depression is sinking in more. As Jordan would say, "Joy is no longer in control, Sadness has touched everything." The Disney Pixar Movie Inside Out really helped our child in ways we still don't know the extent of, but even a year and 1/2 later, she still references it when we speak about Daddy's condition. After the last week of school and all the things Graham had missed, he spent all day Saturday shutting down and crying. He has rarely ever questioned "Why Me?" but this came up frequently this day. If God only gives you what you can handle - when is enough, enough? If you are here on Earth for a purpose, what is Graham's? And is it not done yet? Why is he continuing to suffer? He has "let go" per say, but he is still waking up every morning, feeling a bit worse each day. Selfishly, I LOVE that he is still here with me. But out of my love for him, I hate that he is feeling like this and I do not see the purpose in making one of God's beautiful creatures suffer. Ironically, we both still have Faith, and we know there is some reason, it just sucks.
I have a theory and fear...Graham has always done the traditional "Man of the House" roll of taking care of things - mainly money and fixing things; NOT laundry, or cleaning, or cooking (but I do have a great story of the time he tried to cook minute rice). You see, I was blessed to marry a financial guru, it is very true when they say opposites attract, because I am nowhere near the guru stage...I don't even know if I am at the "decent" stage. And he knows this. Over the past few months, we - HA, who am I kidding, HE has been trying to get all the ducks in a row to make sure J and I are safe and secure and able to keep the house. And he is almost there...we are seriously waiting on one more thing and it should be here by next week. I believe his mind is holding on to this one last piece of security for his girls. I fear that once we receive it, his mind will finally have some peace and will let go.
Graham has since had some good talks with people outside of the family about his "sadness." One being the Director at the facility. It's one thing to be talked to and harped on by family...but it's another to hear it from someone that doesn't have to tell you these things. I can't thank them enough, because it does appear that he is trying to now live for the moment and not dwell on the things he will miss.
***I hate that I have waited so long to update; my days are beginning to run together. I am trying very hard to keep this in chronological order so that one day Jordy may read this an KNOW how hard of a fight her Daddy put up to stay for her.***
I have a theory and fear...Graham has always done the traditional "Man of the House" roll of taking care of things - mainly money and fixing things; NOT laundry, or cleaning, or cooking (but I do have a great story of the time he tried to cook minute rice). You see, I was blessed to marry a financial guru, it is very true when they say opposites attract, because I am nowhere near the guru stage...I don't even know if I am at the "decent" stage. And he knows this. Over the past few months, we - HA, who am I kidding, HE has been trying to get all the ducks in a row to make sure J and I are safe and secure and able to keep the house. And he is almost there...we are seriously waiting on one more thing and it should be here by next week. I believe his mind is holding on to this one last piece of security for his girls. I fear that once we receive it, his mind will finally have some peace and will let go.
Graham has since had some good talks with people outside of the family about his "sadness." One being the Director at the facility. It's one thing to be talked to and harped on by family...but it's another to hear it from someone that doesn't have to tell you these things. I can't thank them enough, because it does appear that he is trying to now live for the moment and not dwell on the things he will miss.
***I hate that I have waited so long to update; my days are beginning to run together. I am trying very hard to keep this in chronological order so that one day Jordy may read this an KNOW how hard of a fight her Daddy put up to stay for her.***
Tuesday, June 7, 2016
Day of Surprises
Surprise #1
With a fresh 2L of blood in him, Graham woke up perky, talkative, playful and hungry! We hung out, and laughed, and joked, and got some things done that we had been putting off.
Surprise #2
As we were chattin' it up - in walks Graham's Lil' (but bigger) Bro Luke. It was AWESOME to see him. He stayed and we all caught up over a couple of hours. There are no words that can describe how much this meant to Graham (and me too).
Surprise #3
Relishing in the fact that Luke came to see us, we heard yet another knock on the door. And in walks Rosenblatt. Y'all - doctors don't do this. Especially doctors on Rosenblatt's caliber. We all know that Graham is one of his favorite patients, but for him to "drive out to the sticks" as he said, is unbelievable. It was awkward that I had to tell the nurse to leave...but after that, it was just BS'ing like it were pre-rejection days. Sports, golf, jokes, man things that I started daydreaming through, and also serious talk. There is mad amounts of respect that each of these men have for each other. And Graham has been really wanting to talk to him about "the next place." And even though Rosenblatt said roughly the same thing that another doctor had (yet with more class I might add) it was easier coming from him. Graham has been seeing him since he was a teenager - some of the old CF stories came out and they were funny - and Graham literally trusts him with his life. Rosenblatt was not happy to hear of how he has been treated and even gave a big shout out to all the Baylor nurses. He will be researching other places and as soon as we say so, he'll take us somewhere else.
Surprise #4
RIGHT...IT KEEPS GETTING BETTER! Our Jordy came by to see us. It was the best way to end a perfect day.
With a fresh 2L of blood in him, Graham woke up perky, talkative, playful and hungry! We hung out, and laughed, and joked, and got some things done that we had been putting off.
Surprise #2
As we were chattin' it up - in walks Graham's Lil' (but bigger) Bro Luke. It was AWESOME to see him. He stayed and we all caught up over a couple of hours. There are no words that can describe how much this meant to Graham (and me too).
Relishing in the fact that Luke came to see us, we heard yet another knock on the door. And in walks Rosenblatt. Y'all - doctors don't do this. Especially doctors on Rosenblatt's caliber. We all know that Graham is one of his favorite patients, but for him to "drive out to the sticks" as he said, is unbelievable. It was awkward that I had to tell the nurse to leave...but after that, it was just BS'ing like it were pre-rejection days. Sports, golf, jokes, man things that I started daydreaming through, and also serious talk. There is mad amounts of respect that each of these men have for each other. And Graham has been really wanting to talk to him about "the next place." And even though Rosenblatt said roughly the same thing that another doctor had (yet with more class I might add) it was easier coming from him. Graham has been seeing him since he was a teenager - some of the old CF stories came out and they were funny - and Graham literally trusts him with his life. Rosenblatt was not happy to hear of how he has been treated and even gave a big shout out to all the Baylor nurses. He will be researching other places and as soon as we say so, he'll take us somewhere else.
Surprise #4
RIGHT...IT KEEPS GETTING BETTER! Our Jordy came by to see us. It was the best way to end a perfect day.
White as a Sheet
Day 2 of photo did not go well - like at all. Tweedle Dumb kept telling us "her rules" and she kept explaining it as if I was a Rocket Scientist. They were in an uproar about his H&H (hemoglobin & hematocrit) levels and kept complaining that they can't do it. They couldn't tell me his levels, they couldn't tell me why, and all the lady could do was pace back in forth in this tiny hell hole of a room! So I sent her away - I told her she had to go complain to someone who can do something. By this point, Graham's anxiety was through the roof and one of our favorite day nurses came running in with Xanax and had his Morphine prepped and ready just in case.
When T.Dumb came back, she tried again to explain things to me way over my head. I finally said, "Look, I hang out with 8 year olds all day, that means I'm as smart as an 8 year old (sorry to all the 8 year olds reading this right now). So PLEASE explain this to me in as crude of laymen's terms you got." And so she did! H&H levels...Baylor has always gone off of the hemoglobin level; 7.2 or lower is a no go and he gets a transfusion below 7. However, Carter's Bloodcare goes off of the hematocrit level; and Graham was at a 28 (no flipping clue what that meant at the time) and it was too low. I asked what his hemoglobin level was and IT WAS 6.2!!!! No wonder the man was as pale as the sheet he was sleeping on! HE HAD NO BLOOD IN HIM! So they packed up and the goobers left the building and Graham was ordered 2L of blood- transfusion style, not vampire.
Now, why did photo effect him like this when he has been doing this treatment, back to back, since last September? Baylor has the "newer" machine that pulls a pint out, separates the cells, hits them with a UV light, mixes them back, and send them back to Graham. This travel "older" machine is more of a cycle. So instead of just pulling a pint out, his blood is constantly being cycled in and out of his body, who's to say how much is gone, how much has returned, or how much was left behind at any given moment. Though its effectiveness is about the same, the pressure it puts on the body is more severe. Graham will now have photo every 2 weeks, every other day, just so his body has time to recuperate and he does not become so anemic again.
When T.Dumb came back, she tried again to explain things to me way over my head. I finally said, "Look, I hang out with 8 year olds all day, that means I'm as smart as an 8 year old (sorry to all the 8 year olds reading this right now). So PLEASE explain this to me in as crude of laymen's terms you got." And so she did! H&H levels...Baylor has always gone off of the hemoglobin level; 7.2 or lower is a no go and he gets a transfusion below 7. However, Carter's Bloodcare goes off of the hematocrit level; and Graham was at a 28 (no flipping clue what that meant at the time) and it was too low. I asked what his hemoglobin level was and IT WAS 6.2!!!! No wonder the man was as pale as the sheet he was sleeping on! HE HAD NO BLOOD IN HIM! So they packed up and the goobers left the building and Graham was ordered 2L of blood- transfusion style, not vampire.
Now, why did photo effect him like this when he has been doing this treatment, back to back, since last September? Baylor has the "newer" machine that pulls a pint out, separates the cells, hits them with a UV light, mixes them back, and send them back to Graham. This travel "older" machine is more of a cycle. So instead of just pulling a pint out, his blood is constantly being cycled in and out of his body, who's to say how much is gone, how much has returned, or how much was left behind at any given moment. Though its effectiveness is about the same, the pressure it puts on the body is more severe. Graham will now have photo every 2 weeks, every other day, just so his body has time to recuperate and he does not become so anemic again.
Tweedle Dee and Tweedle Dumb
OMG!!! Graham might go into Cardiac Arrest with these to yahoos they sent to work the Photopheresis treatment.
1. It took them FOREVER to figure out how to run the machine.
However, the man working did tell Graham he has a big stick (the needle) and he didn't get the horrible pun he said.
2. The lady made MANY comments on Graham's size, even comparing him to a small child. This was making his skin crawl. She was so consumed and worried about his size, we forced her to call Baylor Apheresis to explain how to work the machine for his size. We can't wait to get their take on things. They don't fool around with fools. Frankly, they have the same humor as Graham. So this really could get interesting.
3. Both the man and the woman narrated EVERY move they made and the man giggled about his commentary. I actually think I could hang out with him, I could laugh right along with him and have a great time. She on the other hand was annoying and believed she could do no wrong. Therefore, Graham loved making sure she was proven wrong on several accounts.
4. Once they were done hooking him up and done going over orders - THEY COMMENTED ON EVERY NEWS BLIP ON TV. Again, the man was cracking me up...the woman, ugh.
5. It was awkward - they stood there like they are in the picture - staring at the machine and talking almost the whole time, about Graham.
My goal is to crack the man - currently, we have him on his band wagon about motorcycles and he's freaking out about Graham's past on motorcycles. He's very animated when he's excited - it's awesome.
Then Tweedle Dumb has nothing to say, so she leans up against the wall and smacks her gum, staring at the vampire machine squirting blood into the bowl...ew.
I need wine or whiskey for this.
1. It took them FOREVER to figure out how to run the machine.
However, the man working did tell Graham he has a big stick (the needle) and he didn't get the horrible pun he said.
2. The lady made MANY comments on Graham's size, even comparing him to a small child. This was making his skin crawl. She was so consumed and worried about his size, we forced her to call Baylor Apheresis to explain how to work the machine for his size. We can't wait to get their take on things. They don't fool around with fools. Frankly, they have the same humor as Graham. So this really could get interesting.
3. Both the man and the woman narrated EVERY move they made and the man giggled about his commentary. I actually think I could hang out with him, I could laugh right along with him and have a great time. She on the other hand was annoying and believed she could do no wrong. Therefore, Graham loved making sure she was proven wrong on several accounts.
4. Once they were done hooking him up and done going over orders - THEY COMMENTED ON EVERY NEWS BLIP ON TV. Again, the man was cracking me up...the woman, ugh.
5. It was awkward - they stood there like they are in the picture - staring at the machine and talking almost the whole time, about Graham.
My goal is to crack the man - currently, we have him on his band wagon about motorcycles and he's freaking out about Graham's past on motorcycles. He's very animated when he's excited - it's awesome.
Then Tweedle Dumb has nothing to say, so she leans up against the wall and smacks her gum, staring at the vampire machine squirting blood into the bowl...ew.
I need wine or whiskey for this.
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