Halleluiah he made it through Monday!!! Such a huge blessing and thank you God for answering prayers. I have said it before and they can't shut me up...it is one thing if Graham's body gives in and succumbs to the illness; it is COMPLETELY different if someone does this to him. He is still here to fight and he will not give up until the Good Lord tells him it's time.
On the Admin side, almost everything is fixed. He is still missing a med - liquid morphine, which helps him breathe during an anxiety attack. So this med is not used often, but when it's needed, IT'S NEEDED! All meds and procedures are supposed to be in place and we double check not once, but twice a day for this. However, on the care side - mistakes are STILL happening that put Graham in danger. I know the Admin are getting annoyed with us, but frankly Scarlett, I don't give a damn. His life is a little more important than your tolerance for constructive criticism. The biggest complaint that we believe might be fixed by the end of the day, is the communication between the doctors here and Dr. Rosenblatt or Huang. If this could be done, and the main Drs monitor the care he is receiving, staying here would be awesome and convenient. We can handle the nurses who drop stuff on the floor and try and use it on Graham. We love to kick ass and take names :) which sadly we do 2-3 times a day. And this is why I refuse to leave him alone.
Graham is sleeping most of the day, waking up around 1 or 2pm. This is more than usual, however he does need to recuperate from this weekend and also the past month of crappy sleep. When he does wake up - he is Perky Graham (not Grumpy Graham) and will talk, watch TV, and is active on his phone. These are things he hasn't done in quite sometime. I am glad I am up here to play with my Man. He is on IV iron now and the hope is that once his iron levels are back up, his breathing will get better. FINGERS CROSSED!
On the plus side...I have an actual bed. Now, it's a pull out couch, but IT'S A BED! It's not that God awful "chair turns in to a bed" junk. And I have a dance floor. This is just as important. Because of the large room, when my cool bed is not out, there is a large space available. And not going to lie, I use it nightly. Graham gets Coca-Cola for dinner and now they have those song lyrics on the cans. I have "drop(ped) it like it's hot," "win, win, win no matter what," and I am anxiously awaiting for tonights song.
Thursday, May 26, 2016
Tuesday, May 24, 2016
Nightmare
After a 2 week stay at Baylor, it was decided Graham needed to be moved into a long term care facility. Doctors decided, not us. But it was sold to us- very close to home, bigger rooms, smaller facility, better food, REAL toilet paper, daily physical therapy, occupational therapy, better machinery, top of the line doctors who are very familiar with lung transplant patients and best of yet - a former Lung Transplant Coordinator that worked under Rosenblatt was in charge of the Mansfield facility AND she knew exactly who we were! They were also VERY proud to announce that they DID have Zerbaxa - apparently a rare drug.
A full 24 hours after we were told we were coming, Graham entered the doors of the hospital. And this is where all happy optimistic thoughts faded away. I will not stress you out, or bore you, with the numbered, dated and timed list I have going on for documentation; but I will share an overview - because I am so flabbergasted at how poorly someone can do their job...especially since their job is saving and keeping lives.
To begin with, this facility (which I will not name in this blog...yet) was not prepared and did not have ANY of his meds. Not even a vitamin. We were promised them by nightfall so all I went to retrieve were Creon Enzymes (important to know it HAS to be this brand) so that he could eat. By 11pm when I left, still no meds and the atmosphere changed drastically. There were ABSOLUTELY no smiles and kindness and bedside manners appeared to have been thrown out the window eons ago. This is when the bigger problems began. To appease Graham, they scrounged around for some meds...mainly vitamins and his singulair. After giving one an IV Antibiotic (yea, they found one), the nurse proceeded to flush his port incorrectly...Saline, Heperon, Saline. Graham informed her and explained she was wrong - nicely I might add, so proud of him - but she went on her way. Chaos ensued in the middle of the night and without disclosing too much, it ended with him pulling repeatedly on the bathroom help cord and screaming at the top of his lungs with no O2 because it was turned off.
Day 2: Some meds, but none that keep him alive...you know, like his anti-rejection meds. But the nurse did try and give him Singulair again...6 hours AFTER he had taken the previous one (it's a 24 hour med). Between the Respiratory Therapist and I, we decluttered and set up his room appropriately. All his equipment was clustered in front of his bed preventing him from going to the bathroom and the 4 things he needs hooked up to O2 were all sharing 1 O2 spout. Rick - the RT - is awesome. Later in the day, day nurse comes back in, all excited that he has anti-rejection meds!!! He proceeds to tell Graham what they are and the dosages. Graham questions one of the pills, it does not look right, but nurse assures him it is. Found out the next day that the nurse gave him twice the dosage that should have been given. More promises of meds but nothing comes through - now the admin are concerned and in walks 2nd in command of nursing. Mainly to start documenting and saving their jobs. He gets the full - dated stamped version...and he is in shock. All he can do is shake his head and apologize.
Night shift comes in and it begins to all unfold in front of him. They know nothing about Graham's meds. One nurse refuses to do a thing, the other ACTUALLY goes and researches and figures out he is supposed to have another IV Antibiotic - but uh oh, someone changed the orders and now it's a drug he's not supposed to be on anymore. But since they are the orders, Graham gets the med! Then when do nothing nurse goes to flush his port - she tries to flush it wrong again. Graham tries to stop her but she won't. I had stepped out into the hall with Manager - we came back in to Graham raising his voice at her. Graham tried to have her explain to "the man" what she had done, she refused. Man then gave her an order to lock it with Heperon. We explained to him that this port is gold...it needs to be treated like a new born baby...because it is his ONLY access and without it, he will die.
Man and I stepped outside the hall again and he asked why I'm not pissed, that he would be. I corrected him and let him know that I am pissed. "Then how are you keeping your composure?" I replied, "What is yelling going to do? Besides, my Momma would slap me if I did. Once I begin yelling, you know it has gone to places that you can't return." Sadly, I raised my voice 24 hours later at this Man.
As I was leaving, nurse still had not returned to lock his port. I went to the station and it was obvious that she was down right defying her superior's orders.
Day 3: I was told Man and Head Pharmacists would be here after church, so I made sure I was here. Graham struggled staying awake so 3 hours later, Jordy and I left. He always feels as if he needs to be awake with us. At 8:45pm, Barbara and I got a text "I need help up here ASAP. THEY ARE GOING TO KILL ME" I learned that I can get from my house to the hospital in 6 minutes. I also learned that unlike Dallas folks, people will pull over for you in Mansfield if your hazards are on :)
This whole experience has been a nightmare with lack of meds to no meds, improper dosages, switching meds, and incompetent employees. Admin is almost as angry as we are and remember the lady who knows us - she was on vacation and didn't enjoy it much because she was on the phone the whole time about us. All the stress and lack of needed meds from the weekend caught up to Graham on Monday. He fully believed he was about to die...and his stats showed it too. Looks like this place was going to kill him. It is one thing for it to be his time, that God is ready to take him...but it's a completely different thing for someone, from out right neglect, to kill him.
Between the meds they had and the meds I had with me of Graham's, we were able to stabilize him yesterday afternoon. I have now taken the rest of the year off, which trust me, is a true struggle. I LOVE my job and LOVE having all the end of the year fun with all the kiddos I have grown to love over the year...but I LOVE my husband and cherish our life more. And sadly, I do not trust leaving him alone with a hospital that is supposed to make us feel safe. Admin has promised a complete turn around and has told us one nurse will no longer be employed anymore. We'll see...
A full 24 hours after we were told we were coming, Graham entered the doors of the hospital. And this is where all happy optimistic thoughts faded away. I will not stress you out, or bore you, with the numbered, dated and timed list I have going on for documentation; but I will share an overview - because I am so flabbergasted at how poorly someone can do their job...especially since their job is saving and keeping lives.
To begin with, this facility (which I will not name in this blog...yet) was not prepared and did not have ANY of his meds. Not even a vitamin. We were promised them by nightfall so all I went to retrieve were Creon Enzymes (important to know it HAS to be this brand) so that he could eat. By 11pm when I left, still no meds and the atmosphere changed drastically. There were ABSOLUTELY no smiles and kindness and bedside manners appeared to have been thrown out the window eons ago. This is when the bigger problems began. To appease Graham, they scrounged around for some meds...mainly vitamins and his singulair. After giving one an IV Antibiotic (yea, they found one), the nurse proceeded to flush his port incorrectly...Saline, Heperon, Saline. Graham informed her and explained she was wrong - nicely I might add, so proud of him - but she went on her way. Chaos ensued in the middle of the night and without disclosing too much, it ended with him pulling repeatedly on the bathroom help cord and screaming at the top of his lungs with no O2 because it was turned off.
Day 2: Some meds, but none that keep him alive...you know, like his anti-rejection meds. But the nurse did try and give him Singulair again...6 hours AFTER he had taken the previous one (it's a 24 hour med). Between the Respiratory Therapist and I, we decluttered and set up his room appropriately. All his equipment was clustered in front of his bed preventing him from going to the bathroom and the 4 things he needs hooked up to O2 were all sharing 1 O2 spout. Rick - the RT - is awesome. Later in the day, day nurse comes back in, all excited that he has anti-rejection meds!!! He proceeds to tell Graham what they are and the dosages. Graham questions one of the pills, it does not look right, but nurse assures him it is. Found out the next day that the nurse gave him twice the dosage that should have been given. More promises of meds but nothing comes through - now the admin are concerned and in walks 2nd in command of nursing. Mainly to start documenting and saving their jobs. He gets the full - dated stamped version...and he is in shock. All he can do is shake his head and apologize.
Night shift comes in and it begins to all unfold in front of him. They know nothing about Graham's meds. One nurse refuses to do a thing, the other ACTUALLY goes and researches and figures out he is supposed to have another IV Antibiotic - but uh oh, someone changed the orders and now it's a drug he's not supposed to be on anymore. But since they are the orders, Graham gets the med! Then when do nothing nurse goes to flush his port - she tries to flush it wrong again. Graham tries to stop her but she won't. I had stepped out into the hall with Manager - we came back in to Graham raising his voice at her. Graham tried to have her explain to "the man" what she had done, she refused. Man then gave her an order to lock it with Heperon. We explained to him that this port is gold...it needs to be treated like a new born baby...because it is his ONLY access and without it, he will die.
Man and I stepped outside the hall again and he asked why I'm not pissed, that he would be. I corrected him and let him know that I am pissed. "Then how are you keeping your composure?" I replied, "What is yelling going to do? Besides, my Momma would slap me if I did. Once I begin yelling, you know it has gone to places that you can't return." Sadly, I raised my voice 24 hours later at this Man.
As I was leaving, nurse still had not returned to lock his port. I went to the station and it was obvious that she was down right defying her superior's orders.
Day 3: I was told Man and Head Pharmacists would be here after church, so I made sure I was here. Graham struggled staying awake so 3 hours later, Jordy and I left. He always feels as if he needs to be awake with us. At 8:45pm, Barbara and I got a text "I need help up here ASAP. THEY ARE GOING TO KILL ME" I learned that I can get from my house to the hospital in 6 minutes. I also learned that unlike Dallas folks, people will pull over for you in Mansfield if your hazards are on :)
This whole experience has been a nightmare with lack of meds to no meds, improper dosages, switching meds, and incompetent employees. Admin is almost as angry as we are and remember the lady who knows us - she was on vacation and didn't enjoy it much because she was on the phone the whole time about us. All the stress and lack of needed meds from the weekend caught up to Graham on Monday. He fully believed he was about to die...and his stats showed it too. Looks like this place was going to kill him. It is one thing for it to be his time, that God is ready to take him...but it's a completely different thing for someone, from out right neglect, to kill him.
Between the meds they had and the meds I had with me of Graham's, we were able to stabilize him yesterday afternoon. I have now taken the rest of the year off, which trust me, is a true struggle. I LOVE my job and LOVE having all the end of the year fun with all the kiddos I have grown to love over the year...but I LOVE my husband and cherish our life more. And sadly, I do not trust leaving him alone with a hospital that is supposed to make us feel safe. Admin has promised a complete turn around and has told us one nurse will no longer be employed anymore. We'll see...
Saturday, May 21, 2016
Depression Sucks
I have seen the work of depression in so many great minds and personalities. I witnessed my Momo suffer and most likely die of it. I have always understood it and hated it and now I get to feel it too. Not only personally, but within my family. And it WILL control you. I don't care how happy you are, how much you have going for you, what great things you may have coming up in your life...you will be taken over by a numb sadness that you can't explain...even at a birthday party with cake and a margarita machine!
I have learned a lot about it in the past year. There are many types of depression but they can be put into 2 different categories - chemical imbalance in your brain (physical) or situational (emotional). The first and foremost can be numbed but not fixed, if and only if you find the right medication and your metabolism never changes. But the 2nd is more challenging. The 2nd happens when shit hits the fan and after you try and clean it the fan is still covered and more shit hits it...no one knows what to do...not your brain or your doctor. This is what we are going though. I am lucky of the unlucky 2 of us - most of mine is chemical, the drugs work most of the time. Graham however, not lucky anymore. Before all this - he never understood the sadness that would come over me when our life was perfect. Neither could I - but it's how the cookie crumbled. All he knew to do was hug me, and he has nice warm hugs. Now he is in the same boat, but worse - he's in this "situational" depression and will never leave it because this "situation" will never end. He is on 3 different anti-depressants, but low doses because they are for chemical imbalances, and still struggling. We all know why he's depressed, it's not a mystery but it is not fixable. On his high days, glimpses of the Real Graham shine through and you can better believe that you will be the butt of some stupid joke. On his down days, his strong mind that is keeping him alive is no longer working right and he's not well, at all. This past low, low, low day we had to go over his DNR requests because the Drs didn't think there was much more time.
Just witness it yourself...
What I will be lobbying for on the steps in Austin keeps growing - let's just add Mental Health to the list. On Monday, in a deep low, he ate nothing and could barely breathe, DNR confirmed by Drs. Tuesday, on a mental high, he ate 5 meals and wanted his nails done.
I have learned a lot about it in the past year. There are many types of depression but they can be put into 2 different categories - chemical imbalance in your brain (physical) or situational (emotional). The first and foremost can be numbed but not fixed, if and only if you find the right medication and your metabolism never changes. But the 2nd is more challenging. The 2nd happens when shit hits the fan and after you try and clean it the fan is still covered and more shit hits it...no one knows what to do...not your brain or your doctor. This is what we are going though. I am lucky of the unlucky 2 of us - most of mine is chemical, the drugs work most of the time. Graham however, not lucky anymore. Before all this - he never understood the sadness that would come over me when our life was perfect. Neither could I - but it's how the cookie crumbled. All he knew to do was hug me, and he has nice warm hugs. Now he is in the same boat, but worse - he's in this "situational" depression and will never leave it because this "situation" will never end. He is on 3 different anti-depressants, but low doses because they are for chemical imbalances, and still struggling. We all know why he's depressed, it's not a mystery but it is not fixable. On his high days, glimpses of the Real Graham shine through and you can better believe that you will be the butt of some stupid joke. On his down days, his strong mind that is keeping him alive is no longer working right and he's not well, at all. This past low, low, low day we had to go over his DNR requests because the Drs didn't think there was much more time.
Just witness it yourself...
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| He agreed to this pic because he "knew" it'd be his last (Monday, May 16, 2016) |
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| Then a COMPLETE 180 - (Tuesday, May 17, 2016) he wanted Manicures for his lil' girl |
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And BAM - guess who got painted! With a smile on his face.
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Sunday, May 8, 2016
Happy Mother's Day
Today I was blessed to celebrate my 8th year as a Mommy. It has been the most magical 8 years. There are so many amazing things that happen when you become a parent, your heart grows, you laugh more, you wonder what you ever did for free time, and you grow a tighter bond with your spouse. Or at least I did all these things.
I have always wanted children, a bus load to be exact but I would have settled for 3. Graham did not. He did not want any child of his to parent a child that would go through what he went and is going through. You see, because Graham has CF that makes Jordan is a carrier (Graham can only give her the CF gene and I am not, so I cannot give her the gene). If she meets and falls in love with another carrier, she has a very high chance of having a child with CF...and this is the thought that he could not bare. But to make me happy (and to be honest, there was a part of him who wanted a child too) he granted me the wish and gave me a child. Not just any child, but the most amazing little girl I have ever met.
Most people, before Jordy, knew Graham as a fun, out going, party animal who could talk to anyone. I knew him as this, but I also knew him as a soft, loving, and caring man. This child of ours has allowed outsiders to see this side of him. As she grew older, he no longer cared that he was letting his tough guard down, because she was worth it. Jordan has become his sole life line that he keeps fighting to live in this horrible nightmare that he is in.
And bonus...Jordan is a female replica of Graham. I know one horrible day soon, I will have to say goodbye to my best friend, but I will also get to relish in the fact that this ball of energy that looks and acts like him will be with me for many MANY more years. And I will not completely lose him.
I have always wanted children, a bus load to be exact but I would have settled for 3. Graham did not. He did not want any child of his to parent a child that would go through what he went and is going through. You see, because Graham has CF that makes Jordan is a carrier (Graham can only give her the CF gene and I am not, so I cannot give her the gene). If she meets and falls in love with another carrier, she has a very high chance of having a child with CF...and this is the thought that he could not bare. But to make me happy (and to be honest, there was a part of him who wanted a child too) he granted me the wish and gave me a child. Not just any child, but the most amazing little girl I have ever met.
Most people, before Jordy, knew Graham as a fun, out going, party animal who could talk to anyone. I knew him as this, but I also knew him as a soft, loving, and caring man. This child of ours has allowed outsiders to see this side of him. As she grew older, he no longer cared that he was letting his tough guard down, because she was worth it. Jordan has become his sole life line that he keeps fighting to live in this horrible nightmare that he is in.
And bonus...Jordan is a female replica of Graham. I know one horrible day soon, I will have to say goodbye to my best friend, but I will also get to relish in the fact that this ball of energy that looks and acts like him will be with me for many MANY more years. And I will not completely lose him.
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| Thank you Graham for helping me become a Mother - we are 2 DAMN good parents! |
Pre-Birthday Wish #1
In our family, we can't keep secrets. To be honest, we suck at it. We tend to buy presents close to when we give them, because if we don't, we are too giddy with dumb grins on our faces and we eventually give away the surprise. So Birthday Wishes are no different. That whole don't share or it won't come true thing doesn't scare us.
Jordan decided her Birthday Wish back in March - Daddy to make it to her 8th Birthday. That's all she wanted. And for the longest time, when you asked her what she wanted, that's all she said. Eventually the adolescence kicked in and the list of toys began to grow; but the #1 wish never changed.
This past weekend we celebrated Jordy's 8th birthday. It was bigger than we initially wanted. It was really hard saying no to a child that is having to watch her Daddy die. However, it was REALLY awesome to be surrounded by so many that not only love Jordan, but Graham and me too.
Graham was unable to move and remained hooked up to his Trilogy the entire time, but he made it almost to the end before taking a Xanax and putting in ear plugs. He had to be alert for his babies day. It killed him not being the center of attention. He hated not being able to be Mr. Personality and talking with friend and family while messing with the kiddos. And he is devastated that though he was physically there, he wasn't there, and still is not here.
J has decided that her wish was not good enough. Wish #2 - Daddy to make it to Christmas. My Birthday Wish - Graham to make it to Summer.
Jordan decided her Birthday Wish back in March - Daddy to make it to her 8th Birthday. That's all she wanted. And for the longest time, when you asked her what she wanted, that's all she said. Eventually the adolescence kicked in and the list of toys began to grow; but the #1 wish never changed.
This past weekend we celebrated Jordy's 8th birthday. It was bigger than we initially wanted. It was really hard saying no to a child that is having to watch her Daddy die. However, it was REALLY awesome to be surrounded by so many that not only love Jordan, but Graham and me too.
Graham was unable to move and remained hooked up to his Trilogy the entire time, but he made it almost to the end before taking a Xanax and putting in ear plugs. He had to be alert for his babies day. It killed him not being the center of attention. He hated not being able to be Mr. Personality and talking with friend and family while messing with the kiddos. And he is devastated that though he was physically there, he wasn't there, and still is not here.
J has decided that her wish was not good enough. Wish #2 - Daddy to make it to Christmas. My Birthday Wish - Graham to make it to Summer.
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| HAPPY BIRTHDAY SWEET GIRL! |
Monday, May 2, 2016
Faker...
Another steroid pack...that's what the doctor ordered. And it seemed to be working for Graham. He woke up Sunday morning ready to eat - and he did...Oatmeal, Roadhouse, candy...it was kind of good to see. I would ask for reports, "How are you doing today?" and he'd tell me it was a good day. I'd come home by 5 and he was spent - I just thought, well, his prime is noon - 5pm, sucks that I'm missing it, but at least he's good. We've been counting down the days until summer - when I get to spend everyday with him. Tuesday, he went to the Dermatologist and finally had his antennae removed (that sucker was the size of a red jelly bean!!!). Came home and still said he had a good day, even getting the mail one day. Photo came on Thursday and Friday but I didn't feel the need to hold my breath. I knew he'd be tired, but believed he'd come out of it. And again, he reported that he was doing good.
I have since learned that he is still tired, that he just can't muster the strength anymore. Just saying answers that he thinks I want to hear, and that other's want to hear. He gets the same type question 20 times a day, "How are you man?" "How is it going today?" "How you feelin?" And he has found it easier to just say - good. Then he doesn't have to talk anymore. This PISSES me off...I'm not a friend, I'm not co-worker, I'm a wife...I'm the other half. I'm the one who knows him best and he can be the "real Graham" around. Tell other's the answer you think they want to hear, but tell me what is really going on in your mind. I want to support him and his decision, but I need to know the truth.
I don't think either of us are in a good place right now. No place in Graham's life is going well, and there are not too many shiny places in mine. Jordan - that's about it. I only wish Graham could experience her fully right now, she really is a bright spot in my life.
I have since learned that he is still tired, that he just can't muster the strength anymore. Just saying answers that he thinks I want to hear, and that other's want to hear. He gets the same type question 20 times a day, "How are you man?" "How is it going today?" "How you feelin?" And he has found it easier to just say - good. Then he doesn't have to talk anymore. This PISSES me off...I'm not a friend, I'm not co-worker, I'm a wife...I'm the other half. I'm the one who knows him best and he can be the "real Graham" around. Tell other's the answer you think they want to hear, but tell me what is really going on in your mind. I want to support him and his decision, but I need to know the truth.
I don't think either of us are in a good place right now. No place in Graham's life is going well, and there are not too many shiny places in mine. Jordan - that's about it. I only wish Graham could experience her fully right now, she really is a bright spot in my life.
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