I have never been a fan of rollercoasters - emotional, physical or the ones you find at amusement parks. I have always liked being the "purse" holder for my friends. Once Graham was transplanted, he had a weird fear of his lungs falling out or the wire that holds his ribcage together would be affected by the magnets (insert eye roll). So guess who got to ride most of the rides with our thrill seeking daughter!?!?!?! However, there was this one time that Jordan made Graham do the REALLY tall swings at Six Flags - Graham was so scared! Still one of my favorite stories :)
Graham has not been doing well since Photopheresis last Thursday and Friday. The trip to and from Dallas wears him out, but he normally has recuperated by Sunday. This has not happened this week. He is very tired and lethargic and has been bedridden all week. His breathing has become more shallow and any exertion causes his O2 Sats to drop into the 80s. Then there is the topic of food...he has 0 appetite and the thought of food makes him nauseous again. He knows he needs to eat and he will choke down as much food as he can, but not only is it still not enough, it makes him feel gross afterwards.
I am really craving a nice, long, cross country train ride across the flat plains. Yes, I would like some ups and understand there will be some downs, but this constant small uphill and steep down hill of a rollercoaster is giving us whiplash!
I am currently waiting for Dr. Casanova to return my call. Graham asked for yet another Miracle Pill, but I don't know if there will be one.
Friday, April 22, 2016
Monday, April 18, 2016
Getting Comfortable
Everything is still going well!!! Graham's primetime has been between noon and 5pm...Jordy and I get to miss it most days; however he is still able to talk and be happy. Not going to hide it - it's kind of awesome.
Photopheresis did kick his ass this week. It only makes sense that 2 days of having your blood sucked out of you that you would be spent. Graham began thinking that he was caving again...I kept reassuring him that rest will help, give it a day or 2. He slept most of Saturday, not eating much of anything. Then he started a fun, new habit...waking up several times during the night, walking around the house, and getting "stuck" without O2...I mean, he has ALL DAY LONG to get up and walk around, with PLENTY OF NON-SLEEPY help to save him during these stuck times, but NOOOOOOO. So my mature self just looks at him and begins to laugh. Kind of like the "I've fallen and I can't get up," but it's "I walked and I can't get back!"
Sunday seemed better...he ate some, tried to watch TV with Jordy, and made a plan to make Monday a better day. "Wake me up at 9, tomorrow will be good." Aye aye Cap'n! And then he went on 2 midnight adventures...SMH!
Photopheresis did kick his ass this week. It only makes sense that 2 days of having your blood sucked out of you that you would be spent. Graham began thinking that he was caving again...I kept reassuring him that rest will help, give it a day or 2. He slept most of Saturday, not eating much of anything. Then he started a fun, new habit...waking up several times during the night, walking around the house, and getting "stuck" without O2...I mean, he has ALL DAY LONG to get up and walk around, with PLENTY OF NON-SLEEPY help to save him during these stuck times, but NOOOOOOO. So my mature self just looks at him and begins to laugh. Kind of like the "I've fallen and I can't get up," but it's "I walked and I can't get back!"
Sunday seemed better...he ate some, tried to watch TV with Jordy, and made a plan to make Monday a better day. "Wake me up at 9, tomorrow will be good." Aye aye Cap'n! And then he went on 2 midnight adventures...SMH!
Tuesday, April 12, 2016
Another Miracle Pill...or 2
Remeron - my favorite pill to pronounce - has really helped Graham this past weekend. He started it back up Thursday evening and slept most of the day on Friday. Something he really needed. I almost believed that this would be his new routine. But when he was awake, he was alert and talkative - I'll take it!
I had been on another Criminal Minds marathon that Friday evening in the living room and as I was getting up to go to bed, a strange man was standing outside our bedroom. It took me a second to realize THAT'S MY HUSBAND!!!!!!!!!!!!!!!! I had NOT seen him walk or stand in several days. He had this big ol' grin on his face and all I could do was jump and clap - his least favorite thing of mine I do :)
He was able to eat some yogurt AND walk around the house several times. And this just kept getting better throughout the weekend. I swear he's eating like a pregnant woman. One moment he's craving Chinese take out, then Dickey's BBQ, and the weirdest - IHOPS chicken fajita omelet with pancakes and strawberry topping. But I will go anywhere as long as he's eating. We decluttered his bedside with a new nightstand (bookshelf) that could hold all of his machines. Getting out of bed with 5 annoying machines, tubes coming out of all of them, was a little over-whelming for the Man. He's unsteady as it is, stepping over things should not be on his to do list. I also got him a Lazy Suzan for all of the things he uses regularly. This is my favorite. I like to spin it. I don't even mind that this gets on Graham's nerves, it entertains me.
Another mood stabilizer was also added to his colorful array of meds. Now, Graham may be sick, but he still is a Man. I was home for 4 days and decided to clean out all of the things he has been unable to keep up with. I not only found this new med, still in the Kroger Pharmacy Bag from over a month ago, but also his Flex Card from his Insurance, THAT HAS NOT BEEN TOUCHED ONCE! So which med in particular is doing the magic? We don't know, it could be both, but we don't care. I have my Graham back, Jordan has her Daddy back, we have soooooo missed his smiles and jokes.
Thank you so much for your thoughts and prayers and continued support - they have been answered again!
I had been on another Criminal Minds marathon that Friday evening in the living room and as I was getting up to go to bed, a strange man was standing outside our bedroom. It took me a second to realize THAT'S MY HUSBAND!!!!!!!!!!!!!!!! I had NOT seen him walk or stand in several days. He had this big ol' grin on his face and all I could do was jump and clap - his least favorite thing of mine I do :)
He was able to eat some yogurt AND walk around the house several times. And this just kept getting better throughout the weekend. I swear he's eating like a pregnant woman. One moment he's craving Chinese take out, then Dickey's BBQ, and the weirdest - IHOPS chicken fajita omelet with pancakes and strawberry topping. But I will go anywhere as long as he's eating. We decluttered his bedside with a new nightstand (bookshelf) that could hold all of his machines. Getting out of bed with 5 annoying machines, tubes coming out of all of them, was a little over-whelming for the Man. He's unsteady as it is, stepping over things should not be on his to do list. I also got him a Lazy Suzan for all of the things he uses regularly. This is my favorite. I like to spin it. I don't even mind that this gets on Graham's nerves, it entertains me.
Another mood stabilizer was also added to his colorful array of meds. Now, Graham may be sick, but he still is a Man. I was home for 4 days and decided to clean out all of the things he has been unable to keep up with. I not only found this new med, still in the Kroger Pharmacy Bag from over a month ago, but also his Flex Card from his Insurance, THAT HAS NOT BEEN TOUCHED ONCE! So which med in particular is doing the magic? We don't know, it could be both, but we don't care. I have my Graham back, Jordan has her Daddy back, we have soooooo missed his smiles and jokes.
Thank you so much for your thoughts and prayers and continued support - they have been answered again!
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| He's been cleaned up! Isn't he a STUD!!! |
Sunday, April 10, 2016
Family Night
Goal #1 - Focus on the moment, take advantage of it, and take it in.
As emotional and hard as it is to admit you are tired and to hear how tired he is, there also comes a weird sense of peace. Jordan has had a Best Buy Credit since Christmas and as I picked her up from guitar lessons, we decided to go on over and buy some entertainment for the night. There is not much Graham can do to hang out with J (video games, coloring, watching TV) and we thought we get a new stash of stuff.
1. Rio 2016 Mario vs Sonic for her 3DS
2. Minion Movie
Jordy ran into the house and immediately started playing Rio with Graham. I have no clue what they did, but there was definitely giggling coming out of the bedroom. They both requested fruit, so I brought in bananas - the dorks decided they were telephones and talked to each other. I so wish I caught this one on camera, because it was awesomeness. And though he didn't eat, Jordan ate beside him. We topped the night off by letting her stay up late and we watched the Minion Movie.
It was a night to remember. Jordan did ask what was wrong with my face...Did you get punched Mommy? Ugh - NO, my eyelids are almost swollen shut because I'm an ugly crier - you are sooooo lucky you didn't get this from me!
As emotional and hard as it is to admit you are tired and to hear how tired he is, there also comes a weird sense of peace. Jordan has had a Best Buy Credit since Christmas and as I picked her up from guitar lessons, we decided to go on over and buy some entertainment for the night. There is not much Graham can do to hang out with J (video games, coloring, watching TV) and we thought we get a new stash of stuff.
1. Rio 2016 Mario vs Sonic for her 3DS
2. Minion Movie
Jordy ran into the house and immediately started playing Rio with Graham. I have no clue what they did, but there was definitely giggling coming out of the bedroom. They both requested fruit, so I brought in bananas - the dorks decided they were telephones and talked to each other. I so wish I caught this one on camera, because it was awesomeness. And though he didn't eat, Jordan ate beside him. We topped the night off by letting her stay up late and we watched the Minion Movie.
It was a night to remember. Jordan did ask what was wrong with my face...Did you get punched Mommy? Ugh - NO, my eyelids are almost swollen shut because I'm an ugly crier - you are sooooo lucky you didn't get this from me!
Saturday, April 9, 2016
Losing Strength
Emotionally, this has been a very difficult week. Graham's meds have finally been fixed, but he is still struggling. He's in pain, and not just physically - emotionally. He can no longer eat, food disgusts him again. He feels like he is suffering and he doesn't understand why. What is the purpose of the suffering? If we have this purpose on Earth before we go on to Everlasting Life, what is Graham's purpose? Why is God allowing this tremendous amount of pain?
Our Pastor came to visit on Tuesday. I believe Graham thought all these questions were going to be answered. But they weren't. Some clarity was given and some realistic goals were made. But the struggle and fear is still real and still there. What did happen was a bond with a man that we have looked up to and admired even when he didn't know of us. We are so blessed to have such a cool Pastor who can relate to our lives. Graham feels at ease with him and looks forward to his next visit.
Clarity: It's ok to say it sucks, because it does. It's OK to be afraid, who wouldn't be? Live every moment and stop thinking about the end in mind. Everything will be OK. Take it all in. Write to future Jordan so you are always with her.
This last one he struggles with, emotionally and physically. His hands shake so much now, it's hard for him to write. But it's so important that it's in his handwriting and no one else's, not even a computer's. And he knows he will cry like a baby. He hates that he will miss all these landmark events.
Thursday was the worst. Graham has decided he can no longer fight, that he is too tired. Which is OK. No one, including Jordan or myself, will EVER think badly of him. He has put one hell of a fight and it is not considered losing; he is such an inspiration to so many who are out there fighting some battle of their own. I was sent home because I could not keep myself together - I've said before, I am the UGLIEST CRIER EVER! And now, embarrassingly enough, I have witnesses to this swollen, red, snot infested, hyperventilating face. Whoops! But I don't care - these witnesses are some of the most important people and supports in my life. And they made sure I could go be with literally, my other half.
I had to call Dr. Casanova, and the fear that we were headed to a Hospice Facility was real, but we had talked and cried together and we were ready for this news. However, Casanova had one more idea...they had taken Graham off of Rimeron (the drug we secretly gave him back in the fall for depression and appetite) because of the Marinol (Marijuana). He thinks that they did not give Rimeron enough credit, so why not try it again? We added it back into his pile of meds at night, and we are to call Dr. Casanova back on Monday.
PRAYING THIS IS ANOTHER MIRACLE PILL!!!
Our Pastor came to visit on Tuesday. I believe Graham thought all these questions were going to be answered. But they weren't. Some clarity was given and some realistic goals were made. But the struggle and fear is still real and still there. What did happen was a bond with a man that we have looked up to and admired even when he didn't know of us. We are so blessed to have such a cool Pastor who can relate to our lives. Graham feels at ease with him and looks forward to his next visit.
Clarity: It's ok to say it sucks, because it does. It's OK to be afraid, who wouldn't be? Live every moment and stop thinking about the end in mind. Everything will be OK. Take it all in. Write to future Jordan so you are always with her.
This last one he struggles with, emotionally and physically. His hands shake so much now, it's hard for him to write. But it's so important that it's in his handwriting and no one else's, not even a computer's. And he knows he will cry like a baby. He hates that he will miss all these landmark events.
Thursday was the worst. Graham has decided he can no longer fight, that he is too tired. Which is OK. No one, including Jordan or myself, will EVER think badly of him. He has put one hell of a fight and it is not considered losing; he is such an inspiration to so many who are out there fighting some battle of their own. I was sent home because I could not keep myself together - I've said before, I am the UGLIEST CRIER EVER! And now, embarrassingly enough, I have witnesses to this swollen, red, snot infested, hyperventilating face. Whoops! But I don't care - these witnesses are some of the most important people and supports in my life. And they made sure I could go be with literally, my other half.
I had to call Dr. Casanova, and the fear that we were headed to a Hospice Facility was real, but we had talked and cried together and we were ready for this news. However, Casanova had one more idea...they had taken Graham off of Rimeron (the drug we secretly gave him back in the fall for depression and appetite) because of the Marinol (Marijuana). He thinks that they did not give Rimeron enough credit, so why not try it again? We added it back into his pile of meds at night, and we are to call Dr. Casanova back on Monday.
PRAYING THIS IS ANOTHER MIRACLE PILL!!!
Monday, April 4, 2016
Another Homecoming
After 2 LOOOOOOOOOOOOOOONG weeks, Graham is home. So many hugs and tears and high fives from our 2nd family on 10 Roberts. Graham is stronger and feels better than he has in a long time. We hope we don't see these fabulous Techs, Nurse's, House Keepers, and Therapists, for long time. There were a lot of longs in there... :)
But of course coming home entails drama, why would they want to make it happy and easy for anyone??? That's no fun.
| This just made me laugh - Graham needs a bouncy horse to take treatments on. |
Graham is back using a "High Frequency Chest Wall Oscillation Vest" or better known as "The Vest." He received one back in the mid 90s - this thing weighs 60 pounds and is yellow, old, has smelly air, and doesn't even work right. But they are trying to tell him that in his "stoned, highly medicated" state of mind, he told the social worker it worked. Ugh, NEVER TALK TO A HIGH PATIENT! Even Dr. Rosenblatt laughed at them. So someone had to come out and look at his current machine. What FABULOUS luck - the vest checker was a lady named Daisy. She use to work with Graham back at Children's CF Clinic! She walked in, took one look at it and goes, "Um, that's the Dinosaur." She turned it on, turned a few knobs and declared it dead. YEAAAAAAA! So now we have a nice, new, pretty, LIGHT AND ON WHEELS, vest. (Dinosaur Picture Coming Soon)
| New Pretty Vest |
Then there are his pain management medications. Insurance refuses to give him a 2nd prescription of Marinol - this time he needs 5mg. And the 10mg pills he has are gel capsules, so you can't cut them in 1/2. And, since the Morphine is a fairly new drug, the pharmacy does not have it and it won't be in until Monday. So Graham is back to being in a Dazed and Confused state of mind. Hungry as hell, but pretty much glued to the chair or bed. Hopefully Dr. Casanova can help out with this situation. Graham was finally enjoying life again (to a certain extent) and I want that for him at home too.
***update - Casanova saved the day and I am able to pick up BOTH meds on Monday :)***
Still There - But Getting Stronger
Monday March 28, 2016
Graham is still in the hospital. He has his waves of ups and downs, but he has been on 2L of O2 for the past week!!! They have changed up his Marinol to only 5mg during the day and 10 mg at night...he's no longer stoned into a frozen euphoria. He is also taking a fairly new medication - oral, liquid Morphine. This gives him instant relief - well, it does take the nurses 45 minutes to bring it, so instant is kind of questionable. There is an obvious difference in Graham. He's laughing again, cutting up, socializing. Friends came up on Easter and he never once became anxious or stressed!!! He actually got irritated they stayed such a short time!
We are still waiting on Cobra paperwork, therefore, he is considered "Without Insurance." Not really looking forward to this hospital bill, but the bigger stressor is there is no insurance to fill all his new medications and equipment...besides Medicaid. I don't know if you've ever dealt with Medicaid but it ain't easy! They tend to drag their feet.
We miss Graham so much at home...it's difficult not seeing him all the time, it's difficult leaving him at night and not being by his side, it's difficult when I stay to leave Jordan. I fully realize that this is the life of many people going through many different circumstances...but it still sucks, they may not whine, but I do!
Graham is still in the hospital. He has his waves of ups and downs, but he has been on 2L of O2 for the past week!!! They have changed up his Marinol to only 5mg during the day and 10 mg at night...he's no longer stoned into a frozen euphoria. He is also taking a fairly new medication - oral, liquid Morphine. This gives him instant relief - well, it does take the nurses 45 minutes to bring it, so instant is kind of questionable. There is an obvious difference in Graham. He's laughing again, cutting up, socializing. Friends came up on Easter and he never once became anxious or stressed!!! He actually got irritated they stayed such a short time!
We are still waiting on Cobra paperwork, therefore, he is considered "Without Insurance." Not really looking forward to this hospital bill, but the bigger stressor is there is no insurance to fill all his new medications and equipment...besides Medicaid. I don't know if you've ever dealt with Medicaid but it ain't easy! They tend to drag their feet.
We miss Graham so much at home...it's difficult not seeing him all the time, it's difficult leaving him at night and not being by his side, it's difficult when I stay to leave Jordan. I fully realize that this is the life of many people going through many different circumstances...but it still sucks, they may not whine, but I do!
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| He's going to kill me for this, but this is something we see so rarely! He can make it one full trip around the nurse's station without a break. And 2 laps before he needs bed rest! Current Weight: 96LBS Current O2: 2L |
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