Goodbye Job...Goodbye 2 Incomes...Goodbye Insurance...Goodbye Deductible Met...Goodbye Car
Hello Social Security...Hello Crappy Insurance...Hello Another Rebudget...Hello Ramen
With all these negative events that have happened in the last month, we are still happy. Unfortunately, FMLA ran up with Graham back in February and since he was not with Nissan for a complete year - long term disability cannot take effect and he was let go. It's the law, it is not the company. He still dearly loves his former job and all those that are still working there. Maybe one day he'll be healthy enough to reapply and get his "dream job" back; but for now he's focused on his health. The separation from the company is almost done, everything has been returned and all we are waiting on now is the Cobra paperwork - which apparently takes awhile. I hope it comes soon though, we REALLY do not want to put him on my insurance. I have never complained about teacher pay (not that I would refuse more money), but I don't understand why our Insurance sucks and to add a family member pretty much takes up our paycheck. Sadly, Cobra, which is known to be expensive, is FAR cheaper than adding Graham and Jordy to my insurance.
Material things have never really mattered to us. So the lack of money does not phase us much. The only thing I am adamant about keeping is the house. It quickly became a home, a warm home, that use to be filled with family and friends on UFC nights, Birthdays, and Holidays. This home is surrounded by the most AMAZING neighbors that I could never leave. Jordy is able to run and play in the street and I do not have to worry about her being hurt by a speeding car. By chance we put her at the neighborhood school, she will be able to walk home with friends and be there quickly to take care of Daddy. I married a man that is a FINANCIAL GURU and I know he already has a plan. I do not fear losing the house and do not fear eating like a college kid either.
I do fear the toolbox however. I had to fix something over the weekend and Graham is trying - through text - to help me. I am referring to the tools as Handy Manny does and Graham has no clue about Felipe and Turner :) We finally agreed that Squeeze were the pliers I was looking for and TADA I was able to work the O2 tank (I left the key at the hospital - whoops).
We are so blessed to have such an amazing support system through our friends, family, and faith. Though I fear the "Manly Duties" of the house, I do not fear anything else. Besides, You Tube teaches you everything - I successfully jumped the Truck off!!!
Monday, March 28, 2016
Tuesday, March 22, 2016
Hope is Alive
Graham has gained 10lbs since being admitted last Thursday. His current weight is 97.9!!! His stats are still good and he is still less anxious and more comfortable due to the increase in pain meds. I jokingly keep asking him if he has made it to "one-derland" yet; we love to watch the Biggest Loser...trying to make Graham the Biggest Gainer.
It's awesome that he's comfortable, it's been a long while since he's felt like crud, not death, but he's still struggling with junk in his lungs and he's also very weak. He started physical therapy in the hospital today. Maybe with the added weight and regular exercise he can get stronger. It is still very apparent that he is unable to live like this. A miracle would be awesome and I still dream of the day that he feels like he did pre-transplant, however Graham does not believe it can happen.
Dr. Rosenblatt still is waiting to send Graham's file to UCLA...my guess, to get his weight back up so that nutrition is not a factor in denial.
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| Such a great phrase and something I have always believed in - HOPE |
Saturday, March 19, 2016
Stoned
Whelp - the THC hit hard today (Saturday 3/19). Not that he hates this feeling, maybe reminding him of some college experiences, but he wants to be able to function. He wants to be able to cut up and talk to family, friends, and mess with the nurses. But he is currently glued to the bed and unable to keep his eyes open. HA!
The Palliative Care Nurse came in, Shamekia, and we spoke about dosage. She wants him to try one more day on this dose since yesterday was such a good day. She is thinking that since he didn't sleep well last night (silly boy fought it and stayed up playing Yatzee until 2am! then woke up at 7am) that the effects of the THC are magnifying his exhaustion. If tomorrow is the same, they will lower his dose from 10mg in the morning to 5mg and keep his evening dose at 10mg.
He is still eating well and we were actually able to snuggle in bed without him feeling like the walls were caving in on him. This is the first time in so long. I was beginning to feel less like a wife and more like an employed nurse.
The Palliative Care Nurse came in, Shamekia, and we spoke about dosage. She wants him to try one more day on this dose since yesterday was such a good day. She is thinking that since he didn't sleep well last night (silly boy fought it and stayed up playing Yatzee until 2am! then woke up at 7am) that the effects of the THC are magnifying his exhaustion. If tomorrow is the same, they will lower his dose from 10mg in the morning to 5mg and keep his evening dose at 10mg.
He is still eating well and we were actually able to snuggle in bed without him feeling like the walls were caving in on him. This is the first time in so long. I was beginning to feel less like a wife and more like an employed nurse.
Marinol...Miracle Drug
I realize this is such a hot topic in politics right now - right wing, left wing, I don't care - but Graham has recently been prescribed Marinol...legal medical marijuana. I will now add advocating to legalize marijuana to my CF, Organ Donor and Rejection Research soap box.
On Thursday, I was convinced Graham would not be coming home. That it was time to make him comfortable to live out his final days. This is why cocktails of drugs were added to his list of medications. But somehow, one of these drugs proved to be exactly what he has been needing.
Marinol - this is synthetic THC; the drug found in Marijuana. Graham is now relaxed with all stats back to normal. He is eating (munchies!!!!) and back to being Chatty Graham. Still waiting on the jokes to resurface and the optimistic spirit to return. But I believe it will. If this gives us more days - better days - no matter how short, it will all be worth it. But I still have hope that this is not the end...I have hope that the munchies will help him gain comfort and strength to keep fighting and living.
Jordy came up and was able to joke around and play with Daddy. What a great memory...looking forward to adding more of these!
O2 = 3 to 4L with sats at 95
Heart Rate = resting 71
Blood Pressure = 117/77
Temperature = 97.7
Weight = to be added once I ask...I was asleep at time it was taken :I
On Thursday, I was convinced Graham would not be coming home. That it was time to make him comfortable to live out his final days. This is why cocktails of drugs were added to his list of medications. But somehow, one of these drugs proved to be exactly what he has been needing.
Marinol - this is synthetic THC; the drug found in Marijuana. Graham is now relaxed with all stats back to normal. He is eating (munchies!!!!) and back to being Chatty Graham. Still waiting on the jokes to resurface and the optimistic spirit to return. But I believe it will. If this gives us more days - better days - no matter how short, it will all be worth it. But I still have hope that this is not the end...I have hope that the munchies will help him gain comfort and strength to keep fighting and living.
Jordy came up and was able to joke around and play with Daddy. What a great memory...looking forward to adding more of these!
O2 = 3 to 4L with sats at 95
Heart Rate = resting 71
Blood Pressure = 117/77
Temperature = 97.7
Weight = to be added once I ask...I was asleep at time it was taken :I
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| The wall outside of the Apheresis Lab...I smile every time I pass. |
Friday, March 18, 2016
Is it Over?
March 17, 2016
Second day of Photopheresis. We were to leave by 11:00am to be there by noon. Everything was already packed and ready, so I began to attempt to get him out of bed at 10:30. He did eat a small breakfast...but chocked it down. He was able to go to the bathroom and this is where the struggle began. His heart rate was elevated - bouncing between 98 - 110 beats per minute and he was struggling to catch his breath. I put him on a rebreather mask at 15L and it was phasing him none. He took a full milligram of Xanax and still, nothing. By Noon - I had to call 911.
They know us well now and it works to our benefit. One EMT has been to our house each time and was able to fill in the rest of the crew with Graham's background. They brought a student along with them - this supplied us with entertainment later...but at the time, I wanted to kick his ass. Our neighbor Diana rushed over - the comfort she gave us was powerful. She is a CF pediatric nurse and her knowledge is AWESOME! She convinced Graham to get some Morphine. Now, I know he needed it, but all that was going on in my head was - this is what they are going to do to keep him comfortable. It's over. He's never coming home.
They forewarned me that they are going to administer the meds and then go "lights blazing" to Dallas. They told me don't follow - YEAH RIGHT! I heard, "you have permission to speed!" I was slightly excited, until I got in my car and saw - NO GAS! Ugh, take the fun out of a crappy situation. This meant I had a lot of time to think. I was able to call all parents without losing it - until I learned a dear family friend (one of my parents closest and a father figure to my brother's and I) passed away that morning. And the tears never stopped. I cried for Dan and his family then I moved to myself (I hate that - I hate pity parties). I got frustrated at Graham this morning - how can he walk to the bathroom and not to the car? What if the last words we had together were of me being an unsympathetic bitch. Jordan was not even around to say good-bye. How much morphine did they give him and was he going straight into the Palliative Care Unit? I prayed - I prayed for strength, comfort and then the most difficult. I prayed for God to end Graham's suffering. Whatever His plan is for Graham, to heal or to take, please do so because he can't anymore.
I got to the ER and was immediately comforted. His mom was there which always gives us comfort. And Graham already looked better - not awesome - but better. They ended up giving him Morphine and Versed. This helped regulate his breathing and ease his pain, but his heart rate was still high and he was still needing 15L of O2. Rosenblatt was to be soon on his way down, and because he has been coughing up brown mucus for over a week and 1/2 they started IV meds to treat him for Bronchitis.
I still fear that he is only here to be made comfortable - they have admitted him back into the hospital and given him a cocktail of LOTS of drugs - Marinol, Rimaron, Trazadone, and one other. Looking forward to what tomorrow brings. At least he is getting some much needed drug induced sleep.
Second day of Photopheresis. We were to leave by 11:00am to be there by noon. Everything was already packed and ready, so I began to attempt to get him out of bed at 10:30. He did eat a small breakfast...but chocked it down. He was able to go to the bathroom and this is where the struggle began. His heart rate was elevated - bouncing between 98 - 110 beats per minute and he was struggling to catch his breath. I put him on a rebreather mask at 15L and it was phasing him none. He took a full milligram of Xanax and still, nothing. By Noon - I had to call 911.
They know us well now and it works to our benefit. One EMT has been to our house each time and was able to fill in the rest of the crew with Graham's background. They brought a student along with them - this supplied us with entertainment later...but at the time, I wanted to kick his ass. Our neighbor Diana rushed over - the comfort she gave us was powerful. She is a CF pediatric nurse and her knowledge is AWESOME! She convinced Graham to get some Morphine. Now, I know he needed it, but all that was going on in my head was - this is what they are going to do to keep him comfortable. It's over. He's never coming home.
They forewarned me that they are going to administer the meds and then go "lights blazing" to Dallas. They told me don't follow - YEAH RIGHT! I heard, "you have permission to speed!" I was slightly excited, until I got in my car and saw - NO GAS! Ugh, take the fun out of a crappy situation. This meant I had a lot of time to think. I was able to call all parents without losing it - until I learned a dear family friend (one of my parents closest and a father figure to my brother's and I) passed away that morning. And the tears never stopped. I cried for Dan and his family then I moved to myself (I hate that - I hate pity parties). I got frustrated at Graham this morning - how can he walk to the bathroom and not to the car? What if the last words we had together were of me being an unsympathetic bitch. Jordan was not even around to say good-bye. How much morphine did they give him and was he going straight into the Palliative Care Unit? I prayed - I prayed for strength, comfort and then the most difficult. I prayed for God to end Graham's suffering. Whatever His plan is for Graham, to heal or to take, please do so because he can't anymore.
I got to the ER and was immediately comforted. His mom was there which always gives us comfort. And Graham already looked better - not awesome - but better. They ended up giving him Morphine and Versed. This helped regulate his breathing and ease his pain, but his heart rate was still high and he was still needing 15L of O2. Rosenblatt was to be soon on his way down, and because he has been coughing up brown mucus for over a week and 1/2 they started IV meds to treat him for Bronchitis.
I still fear that he is only here to be made comfortable - they have admitted him back into the hospital and given him a cocktail of LOTS of drugs - Marinol, Rimaron, Trazadone, and one other. Looking forward to what tomorrow brings. At least he is getting some much needed drug induced sleep.
Fading
Since coming home from the ER on March 7, Graham's health has taken yet another toll. His cough is vicious, spells lasting 30-40 seconds, and the struggle to catch his breath afterwards is tough. He has not slept in well over 5 nights and delirium is getting the best of his attitude. By Tuesday, he was done. He couldn't fight anymore and he asked me to forgive him. He doesn't necessarily want to give up, but he does not believe his body can take anymore pain. He's too weak and he hurts so bad, he's suffering and can't even enjoy the little life that he has anymore. He hates the idea that he has let Jordy and I down (LIKE HE COULD EVER DO THAT!!!!!).
The fear that he is being called a "hypochondriac" keeps being apparent. He called Clinic on Tuesday, and they asked for him to wait to come in on Wednesday - even though he was severely struggling. Because his appointment was so early, I was able to sleep walk him to the car and he was good all the way through labs and X-rays. Very odd coming in so early - EVERYONE is on time, EVEN DR. ROSENBLATT!!! I will wake up at 5:45am every time so that we can get in and out in a timely manner.
Rosenblatt walked in the room and took over- casting the nurse aside. His demeanor changed quickly once he saw Graham. Graham's lung functions are about the same, but they have been on a slow decline since December. He currently weighs 88lbs and his O2 sats drop into the 80s while standing. He has lost so much muscle mass, that if you were to see him now, you would not recognize him. Plus his side hair his growing so fast, I just might be giving him a comb over soon :)
What I told Rosenblatt: This is not the man I fell in love with. He no longer has the optimism and humor that make Graham, Graham. He does not want to give up, but he can no longer take the pain. He's irritable and can't stand much activity going on around him. This is killing him because his daughter is a 7 year old ball of energy. He fears that y'all believe he is a hypochondriac and he keeps being dismissed. He can't sleep. He can't get comfortable. Is it time?
Rosenblatt's response: I agree that Graham is no longer Graham. I will never call him a hypochondriac, as long as I've known him (about 20 years) he has always had the best outlook on life. I am saddened that it is fading. (And there was obvious tension on his face and tears being fought back - we are so lucky to have this man as G's doctor. He loves him so.)
The plan: 1. He has contacted UCLA. This program is known for taking chances. They are the first to try double lung transplants on the elderly. Dr. Rosenblatt spoke with the Dr. Ardehali - a transplant surgeon and professor at the college. Dr. Ardehali agreed that Graham sounded like a challenging case, but he is willing and wants to look at all his files. FIRST UPLIFTING NEWS IN A LOOOOOOOOOONNNNNG TIME! So Dr. R really IS still trying and hasn't given up!
2. Nutrition and pain management. If Graham can't get his nutrition and strength up - NO ONE will transplant him. So he has prescribed him Medical Marijuana to help him with comfort, anxiety, and hunger. Now, this is Texas, so it is synthetic THC in a pill form. Might as well let the pharmaceutical companies make money off throwing more chemicals down your throat instead of offering herbal and organic plants. Go figure. And start him on a powerful sleep aid at night.
3. When it's time, Rosenblatt will know. He will be admitted into the Palliative Care Unit and be made comfortable. Graham's wish is to not die at home.
This was such a hard clinic visit. It was all about comfort, not getting well. We are both numb...yet again.
The fear that he is being called a "hypochondriac" keeps being apparent. He called Clinic on Tuesday, and they asked for him to wait to come in on Wednesday - even though he was severely struggling. Because his appointment was so early, I was able to sleep walk him to the car and he was good all the way through labs and X-rays. Very odd coming in so early - EVERYONE is on time, EVEN DR. ROSENBLATT!!! I will wake up at 5:45am every time so that we can get in and out in a timely manner.
Rosenblatt walked in the room and took over- casting the nurse aside. His demeanor changed quickly once he saw Graham. Graham's lung functions are about the same, but they have been on a slow decline since December. He currently weighs 88lbs and his O2 sats drop into the 80s while standing. He has lost so much muscle mass, that if you were to see him now, you would not recognize him. Plus his side hair his growing so fast, I just might be giving him a comb over soon :)
What I told Rosenblatt: This is not the man I fell in love with. He no longer has the optimism and humor that make Graham, Graham. He does not want to give up, but he can no longer take the pain. He's irritable and can't stand much activity going on around him. This is killing him because his daughter is a 7 year old ball of energy. He fears that y'all believe he is a hypochondriac and he keeps being dismissed. He can't sleep. He can't get comfortable. Is it time?
Rosenblatt's response: I agree that Graham is no longer Graham. I will never call him a hypochondriac, as long as I've known him (about 20 years) he has always had the best outlook on life. I am saddened that it is fading. (And there was obvious tension on his face and tears being fought back - we are so lucky to have this man as G's doctor. He loves him so.)
The plan: 1. He has contacted UCLA. This program is known for taking chances. They are the first to try double lung transplants on the elderly. Dr. Rosenblatt spoke with the Dr. Ardehali - a transplant surgeon and professor at the college. Dr. Ardehali agreed that Graham sounded like a challenging case, but he is willing and wants to look at all his files. FIRST UPLIFTING NEWS IN A LOOOOOOOOOONNNNNG TIME! So Dr. R really IS still trying and hasn't given up!
2. Nutrition and pain management. If Graham can't get his nutrition and strength up - NO ONE will transplant him. So he has prescribed him Medical Marijuana to help him with comfort, anxiety, and hunger. Now, this is Texas, so it is synthetic THC in a pill form. Might as well let the pharmaceutical companies make money off throwing more chemicals down your throat instead of offering herbal and organic plants. Go figure. And start him on a powerful sleep aid at night.
3. When it's time, Rosenblatt will know. He will be admitted into the Palliative Care Unit and be made comfortable. Graham's wish is to not die at home.
This was such a hard clinic visit. It was all about comfort, not getting well. We are both numb...yet again.
Something is Wrong
Not 2 days after Tim and Fiona left, Graham hit another big bump in the road and we were back in the ER. He had tightness and sharp stabbing pain in his left lung, a horrible productive cough that kept him up at night, massive shortness of breath, and his heart rate was elevated. All this was causing him to not be able to catch his breath and get comfortable. This WAS NOT an anxiety attack. He has been doing really well with keeping up with medications and where he has had anxiety, there were no panic attacks that he will have an anxiety attack...this is huge progress!
We were told to go to the Physicians Referral ER - this is where the Dr calls in and they expect you, in hopes to have a shorter wait. We arrived about 4:45 and of course, they had no clue Graham was to come in. This caused a looooooooong wait to get into an ER room. He went through 3 O2 tanks! Once finally in the back - he got his blood work done, X-Ray, etc....and everything came back fine. The pulmonary Dr on call - who we typically like and respect told the ER doc, "I just sent him home on Wednesday, he's fine. Send him back home."
Now you can look at this 2 ways - optimistically or pessimistically. How our life has been lately, you can guess which road we took. We DID NOT think he was lost and knew there was nothing he could really do since all labs and tests came back fine. We believed that they are starting to think Graham is a hypochondriac. This is the absolute OPPOSITE of what he is or ever has been. Graham is the epitome of an optimistic fighter. He has always known his body well and has many times gone into the Drs office or ER and diagnosed himself, only to be proven right. On this Monday, we just knew it was some infection, most likely pneumonia. But since his X-ray came up clear, there was nothing to do and he was sent home at 2am. In no better shape, even more tired, and a little defeated.
We were told to go to the Physicians Referral ER - this is where the Dr calls in and they expect you, in hopes to have a shorter wait. We arrived about 4:45 and of course, they had no clue Graham was to come in. This caused a looooooooong wait to get into an ER room. He went through 3 O2 tanks! Once finally in the back - he got his blood work done, X-Ray, etc....and everything came back fine. The pulmonary Dr on call - who we typically like and respect told the ER doc, "I just sent him home on Wednesday, he's fine. Send him back home."
Now you can look at this 2 ways - optimistically or pessimistically. How our life has been lately, you can guess which road we took. We DID NOT think he was lost and knew there was nothing he could really do since all labs and tests came back fine. We believed that they are starting to think Graham is a hypochondriac. This is the absolute OPPOSITE of what he is or ever has been. Graham is the epitome of an optimistic fighter. He has always known his body well and has many times gone into the Drs office or ER and diagnosed himself, only to be proven right. On this Monday, we just knew it was some infection, most likely pneumonia. But since his X-ray came up clear, there was nothing to do and he was sent home at 2am. In no better shape, even more tired, and a little defeated.
The Scottish Invasion
We have been looking forward to our Aunt and Uncle coming to stay with us since they day they booked their flight. The plan was to go see them last summer, but with Graham getting sick - trip to Scotland was canceled.
I'm not going to lie - this was one the best, most uplifting visits we've ever had. We laughed, relaxed, ate, visited, enjoyed the back patio, played with Sadie, soccer - soccer - soccer, and a lil' Jordy Bootcamp for Uncle Tim. During their too short of stay, Graham laughed, spoke long sentences, left the hospital, walked around, put a puzzle together (!!!!), and finally relaxed. We miss Tim and Fiona dearly already and can't wait to see them again!
I'm not going to lie - this was one the best, most uplifting visits we've ever had. We laughed, relaxed, ate, visited, enjoyed the back patio, played with Sadie, soccer - soccer - soccer, and a lil' Jordy Bootcamp for Uncle Tim. During their too short of stay, Graham laughed, spoke long sentences, left the hospital, walked around, put a puzzle together (!!!!), and finally relaxed. We miss Tim and Fiona dearly already and can't wait to see them again!
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| Sadie fell in love too! |
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| MMMMM, Scottish Candy!!! |
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| Fiona wanted to take over the walker - haha. |
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| Jordy received the "TRUSTWORTHY" award at school! |
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| Jordy learned how to work the Selfie Stick..... |
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| ....and Graham let her take a pic with him :) |
Godsend
Dr. Casanova has become a Godsend. Upon seeing him in his worse state, Casanova changed up Graham's fentanyl patch and was going to start a high does taper of steroids to help with the wheezing. Instead of yogurt, he is going to start taking probiotic pills to help with tummy issues caused by antibiotics. And he is changing his Xanax from every 8 hours to every 4. All this within 10 minutes!
Dr. Casanova is a very kind and patient man - everyone in his office is. He made us feel comfort, like our family mattered. Just what we needed at this time.
Dr. Casanova is a very kind and patient man - everyone in his office is. He made us feel comfort, like our family mattered. Just what we needed at this time.
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