For some time now, Graham has been suffering from horrible headaches (mainly in the morning) and the feeling of suffocation (more so than pre-Christmas). This is why he has had his last 2 hospital stays. They have been taking a very painful blood draw from him called a "blood gas." In the body, most of the CO2 is in the form of a substance called bicarbonate (HCO3-). Therefore, the CO2 blood test (blood gas) is really a measure of your blood bicarbonate level. With these tests, they have learned that his CO2 levels have become increasingly higher. CO2 is an asphyxiate, therefore not only is he short of breath from his rejection, he is constantly feeling as if he is suffocating. This is also what has been causing his horrible headaches.
Last Thursday, Graham went to Clinic on an emergency basis (much easier than ER where they do not know him and all they would do is call Clinic anyways) and his CO2 level was 64 mEq/L; the average person's level is anywhere between 23-29 mEq/L (milliequivalent units per liter of blood)....please don't ask, I DO NOT understand that unit of measurement :) This is bad, very bad. So they admitted him into the hospital on IV antibiotics since the fear of putting him on a vent was too high.
To get rid of the CO2, you exhale. Graham's breathing is so short and shallow, he is unable to excrete enough of it. The best way to clear out the excess poison is to intubate and have a machine exhale for you - not an option for Graham. Another way is to use a Bi-Pap machine. Fairly common, I'm sure you know plenty of people on either a C-Pap or Bi-Pap machine; both of our Dad's use one :) A hospital grade Bi-Pap machine should take 1 or 2 nights to rid the body of excess CO2, then you can move down to the nice little home machine. Graham's levels to become so high, it almost appears to be too late. He has now been on the machine for 5 nights and his levels have only dropped into the 50s. Though he had a good night last night, Jordy and he talked and colored tattoos - it's how we roll - he is again very short of breath today and not feeling so hot.
Wednesday, January 27, 2016
Friday, January 22, 2016
Unexpected Visit
Yesterday, Thursday, Graham went in for his regularly scheduled Photopheresis treatment. The night before, he uncharacteristically admitted that he was worried about it. He has been feeling weak and it has been hard for him to get up and move around. He continues to have horrible headaches in the mornings and if he can't get them under control quickly, they become debilitating.
His mom took him into treatment and he quickly noted that it was a "quiet" day and that he was struggling. Treatment began and he slept. Once it was all over and he was awake, he knew something was wrong and his mom took him up to Clinic to see the doctor. A couple of visits ago, as we were waiting in the waiting room, a woman we were sitting beside went back to the doctor and left on a stretcher with full medical attention by the EMTs. This was Graham's fear yesterday. He didn't know if he or the doctors could get him under control. They did X-Rays and a blood gas and masked him on 15L of O2. Rosenblatt forewarned him that if they could not get it under control, they would need to vent him, and he was worried he would never come off the vent. This lit a fire under Graham's ass and he was soon down to 6L and moved into a room.
Now, this last bit of information was not relayed to me until I was all tucked into my crappy hospital chair bed in my jammies with the bite guard on - nice image, huh? This did prevent A LOT of hyperventilating at school with massive amount of ugly crying. I'm glad he tried to protect me, but what if...I would be back to August afraid I'd never speak to him again!
He was moved to floor 8...mainly a CF pre-transplant (non tele - heart monitor) floor. This is where he was 6 years ago and it felt WEIRD! We knew nobody, there are several doors to awkwardly go through to get to his room, and the room is smaller with an airplane type bathroom sink. Add a dancing, Punky Bruster dressed and "I'm about to rap so hard" Jordy and we felt we were at a crappy Motel 6 and J was on vacation. We were waiting a room to be ready on floor 10 and were settled in, sleeping for the night - excited that floor 8 has a fridge - Graham wearing descent looking jammies, me wearing something that came out of the 80s (and don't forget the bite guard) when were woken up at 1:30am with several nurses to be moved to floor 10. We added another person for transport and were greeted by the majority of nurses and techs on floor 10. So glad I'm the type that doesn't give a darn - I looked in the mirror, I knew what they saw, and 2 nurses decided to even comment on my loveliness. I just danced for them - why not.
Midnight snack of Girl Scout Cookies and we were happily asleep in our home away from home (without a fridge).
His mom took him into treatment and he quickly noted that it was a "quiet" day and that he was struggling. Treatment began and he slept. Once it was all over and he was awake, he knew something was wrong and his mom took him up to Clinic to see the doctor. A couple of visits ago, as we were waiting in the waiting room, a woman we were sitting beside went back to the doctor and left on a stretcher with full medical attention by the EMTs. This was Graham's fear yesterday. He didn't know if he or the doctors could get him under control. They did X-Rays and a blood gas and masked him on 15L of O2. Rosenblatt forewarned him that if they could not get it under control, they would need to vent him, and he was worried he would never come off the vent. This lit a fire under Graham's ass and he was soon down to 6L and moved into a room.
Now, this last bit of information was not relayed to me until I was all tucked into my crappy hospital chair bed in my jammies with the bite guard on - nice image, huh? This did prevent A LOT of hyperventilating at school with massive amount of ugly crying. I'm glad he tried to protect me, but what if...I would be back to August afraid I'd never speak to him again!
He was moved to floor 8...mainly a CF pre-transplant (non tele - heart monitor) floor. This is where he was 6 years ago and it felt WEIRD! We knew nobody, there are several doors to awkwardly go through to get to his room, and the room is smaller with an airplane type bathroom sink. Add a dancing, Punky Bruster dressed and "I'm about to rap so hard" Jordy and we felt we were at a crappy Motel 6 and J was on vacation. We were waiting a room to be ready on floor 10 and were settled in, sleeping for the night - excited that floor 8 has a fridge - Graham wearing descent looking jammies, me wearing something that came out of the 80s (and don't forget the bite guard) when were woken up at 1:30am with several nurses to be moved to floor 10. We added another person for transport and were greeted by the majority of nurses and techs on floor 10. So glad I'm the type that doesn't give a darn - I looked in the mirror, I knew what they saw, and 2 nurses decided to even comment on my loveliness. I just danced for them - why not.
Midnight snack of Girl Scout Cookies and we were happily asleep in our home away from home (without a fridge).
Wednesday, January 20, 2016
Hospice
By reading the title, if you had any negative feeling attached to it, multiply it times 1,000,000 and you might get the feeling we had last week. I do not care what they are actually there for; what they are known for is to make you comfortable in your dying days. The feeling as if everyone has given up on Graham weighs so heavy on our hearts and minds that on the day it was brought to us...neither of us ate or spoke for over 24 hours.
We cried. No anger, no panicking...just tears. Once we were dried up and before we restored the fluid in our eyes to cry again, we silently and robotically played on our phones. Then we'd cry again.
This possibility of someone coming into our home was only brought up with the whole hearted goodness of their heart - we have no doubt about it. It just stung. I always imagined something less mentally abrasive, like home health care.
Clinic did not bring any good news either. Only a slight glimmer of added calories. Did you know there is a clear, tasteless, liquid product out there that will add 300 calories to any warm food? Now, most people run away from this; in Graham's case, he desperately needs it. Now to just get him to eat...anything would be great. Might even put it in a shot glass and let him pretend he's back in collage :)
Graham has been denied a transplant from 2 hospitals; a 3rd Rosenblatt refuses to have them work on Graham. When asked how he believes Graham's health is, Rosenblatt believes it is very poor. When asked the difference of "killing" Graham by transplant or "killing" him by ignoring and not helping him, we got all the political answers you can think of. Rosenblatt asked how Graham was, Graham looked at him and told him, "I'm afraid that NO ONE is going to help me and nothing will be done."
Rosenblatt left. We got our answers. I got the feeling that it's over. Graham now has 1 job - eat. Pound down as many calories that he can. But he won't. We will be looking into a hospice or home health care type nurse to help out at home. After a few days to let it all process, it doesn't seem like a bad idea anymore. They are there to help and it is not a death wish. Maybe they can make him eat.
We cried. No anger, no panicking...just tears. Once we were dried up and before we restored the fluid in our eyes to cry again, we silently and robotically played on our phones. Then we'd cry again.
This possibility of someone coming into our home was only brought up with the whole hearted goodness of their heart - we have no doubt about it. It just stung. I always imagined something less mentally abrasive, like home health care.
Clinic did not bring any good news either. Only a slight glimmer of added calories. Did you know there is a clear, tasteless, liquid product out there that will add 300 calories to any warm food? Now, most people run away from this; in Graham's case, he desperately needs it. Now to just get him to eat...anything would be great. Might even put it in a shot glass and let him pretend he's back in collage :)
Graham has been denied a transplant from 2 hospitals; a 3rd Rosenblatt refuses to have them work on Graham. When asked how he believes Graham's health is, Rosenblatt believes it is very poor. When asked the difference of "killing" Graham by transplant or "killing" him by ignoring and not helping him, we got all the political answers you can think of. Rosenblatt asked how Graham was, Graham looked at him and told him, "I'm afraid that NO ONE is going to help me and nothing will be done."
Rosenblatt left. We got our answers. I got the feeling that it's over. Graham now has 1 job - eat. Pound down as many calories that he can. But he won't. We will be looking into a hospice or home health care type nurse to help out at home. After a few days to let it all process, it doesn't seem like a bad idea anymore. They are there to help and it is not a death wish. Maybe they can make him eat.
Saturday, January 16, 2016
Glimpses
Graham is spending most of his days in bed miserable. Talking and activity gives him horrendous headaches, so he sleeps, watches court TV, and plays Yatzee or Trivia Crack. The funny and inappropriate Graham is just not there anymore. So I live for the moments that he is able to muster up humor and fun.
As we left Clinic last Wednesday, I made him eat something. All he wanted was a cheeseburger happy meal. Once he finished his meal, he got his toy out and jokingly played with it and smiled. Something we don't see much anymore. I will always cherish this stupid toy.
As we left Clinic last Wednesday, I made him eat something. All he wanted was a cheeseburger happy meal. Once he finished his meal, he got his toy out and jokingly played with it and smiled. Something we don't see much anymore. I will always cherish this stupid toy.
Friday, January 8, 2016
Our Angel
This child of ours goes through and sees more things than a 7 year old should ever have too. Our hearts constantly break for her and we wonder at all time what goes on in her little brain. But she sees all this and lives all this with more style and grace than I will never have. She is always willing to help. She is always there for a hug. She is never negative about helping out with the things I cannot do by myself.
Yes, Jordy breaks down...she wonders why her Daddy? She is scared to death the worst will happen.
She asked me the other day if we could move back into our old house off Fern, because Daddy was not sick there. But I told her God showed us this new house because he knew we would need all the love and support from our neighbors (we just happened to move into the BEST neighborhood ever).
I pray for our angel every moment I can. She is too big of a gift not too.
Yes, Jordy breaks down...she wonders why her Daddy? She is scared to death the worst will happen.
She asked me the other day if we could move back into our old house off Fern, because Daddy was not sick there. But I told her God showed us this new house because he knew we would need all the love and support from our neighbors (we just happened to move into the BEST neighborhood ever).
I pray for our angel every moment I can. She is too big of a gift not too.
 |
| Carrying with pride - backpack FULL of Meds and O2 tank |
Numb...but not comfortably
With this latest ordeal, it is obvious to us that Graham needs a transplant. It is no longer: live a shitty ass life but watch your daughter grow up VS take a chance on a transplant and get a physically happy life back. Without transplant, Graham will be no longer.
So Graham put pressure on Dr. Rosenblatt for an answer from UT Southwestern. Graham has been denied from a 2nd institution for a double lung transplant.
Graham is numb...yes, VERY upset, but he can't yell, he can't awkwardly laugh, he can't get upset...but he can get on a mission. He is hell bent on finding an institution that will give him a chance to live. And (verbally) Rosenblatt too.
I, on the other hand, am pissed. How can someone say, "I am afraid to kill him" when they are killing him by not giving him this chance? I wonder if they think they might 'waste an organ' when I know personally they transplant 70+ year old patients. Now, before you start thinking I am heartless - I AM SO GRATEFUL that they have given the chance and opportunity to transplant patients. I believe there are so many people, no matter what age, that deserve it. But if you are telling me that these lungs may be wasted because of his chances, but you will give these lungs to an older person whose body is ailing and not as strong - I don't understand. Now, no one has given me this answer. But I have been told that I infer, or read between the lines, really well.
I do not know what our future holds at this point, or what our next step will be. I do know Graham has a clinic appointment with Dr. Rosenblatt on Wednesday and that he will be getting more than he expected when we arrive. Fight for Graham is NOT a statement - it is our life right now.
Public Service Announcement: The more organ donors we have (do you really need them anymore after you are gone???) means more organs are available to those who need them and less pickiness the doctors have to give them. Maybe, just maybe, if they see they have enough they will see an opportunity to take a chance on someone and learn - see it as a scientific experiment that might just give someone a 2nd (or 3rd in Graham's case) chance at a life they might have never known. Did you know 22 people die everyday waiting on an organ?
If you are able, please visit http://organdonor.gov/becomingdonor/index.html it not only saves a life, it gives a life to those not transplanted. Without it, Jordy would NEVER have been able to remember a life with her amazing father.
So Graham put pressure on Dr. Rosenblatt for an answer from UT Southwestern. Graham has been denied from a 2nd institution for a double lung transplant.
Graham is numb...yes, VERY upset, but he can't yell, he can't awkwardly laugh, he can't get upset...but he can get on a mission. He is hell bent on finding an institution that will give him a chance to live. And (verbally) Rosenblatt too.
I, on the other hand, am pissed. How can someone say, "I am afraid to kill him" when they are killing him by not giving him this chance? I wonder if they think they might 'waste an organ' when I know personally they transplant 70+ year old patients. Now, before you start thinking I am heartless - I AM SO GRATEFUL that they have given the chance and opportunity to transplant patients. I believe there are so many people, no matter what age, that deserve it. But if you are telling me that these lungs may be wasted because of his chances, but you will give these lungs to an older person whose body is ailing and not as strong - I don't understand. Now, no one has given me this answer. But I have been told that I infer, or read between the lines, really well.
I do not know what our future holds at this point, or what our next step will be. I do know Graham has a clinic appointment with Dr. Rosenblatt on Wednesday and that he will be getting more than he expected when we arrive. Fight for Graham is NOT a statement - it is our life right now.
Public Service Announcement: The more organ donors we have (do you really need them anymore after you are gone???) means more organs are available to those who need them and less pickiness the doctors have to give them. Maybe, just maybe, if they see they have enough they will see an opportunity to take a chance on someone and learn - see it as a scientific experiment that might just give someone a 2nd (or 3rd in Graham's case) chance at a life they might have never known. Did you know 22 people die everyday waiting on an organ?
If you are able, please visit http://organdonor.gov/becomingdonor/index.html it not only saves a life, it gives a life to those not transplanted. Without it, Jordy would NEVER have been able to remember a life with her amazing father.
The Murtaugh
If we were to only have one good day over the winter break - at least it was the day that mattered...Christmas. The rest were crap. By the Sunday after Christmas, Graham had reached a new low and I had to call 911. Within 5 minutes (Go GPFD!!!!) our master bath was filled with 5 rather large manly men. I tried to keep it together, and I feel as if I succeeded for the most part, while I answered all their questions. All 5 of these men were kind, understanding, nonjudgmental, supporting, and efficient. They were able to stabilize Graham and did not have to fly down the highway with sirens blaring. Jordy was already across the street playing and was able to stay there until her Grandparents could collect her. Our neighbor ran and gave me a hug, and this hug gave me so much comfort that I was finally able to breathe and cry a little.
I rode in the front of the Ambulance and they assured me Graham was fine in the back. I am an ADHD shiny button obsessed person - I see it, I press it. So the fact that I don't even remember the mass amount of fun buttons in the cab only reminds me of how frozen I was. I did not believe his number was up, but I had a feeling he would never be home again. The driver was awesome. He kept me calm and kept it light. He is about the same age as me and from Burleson, back when we were in High School, it too was a small town like Cleburne and we began reminiscing about those days. It turns out his nephew died of CF at a really young age and this ride to Dallas hit close to home for him. And since I get to drive to Baylor Dallas so often, I got to take him my way!
In the ER (oddly enough, we got the same room as the last visit), Graham's stats and tests were not looking great and the Drs initial thought was to put him in ICU - ummmmmm, that did not please Graham and he was hell bent on fixing that. If he could move from a mask on 15L of O2 to a nasal cannula on 5L of O2, they would admit him onto the regular floor. Positive: his lungs looked great! Better than the last visit. Negative: his white blood count was up and it was most likely stemming from whatever was going on in his mouth; and his CO2 levels were high too. He was able to move down on the oxygen and he was moved to 10Roberts - our home away from home.
CT Scans and X-rays were ordered on his face along with a visit from the ENT doc. Nothing was found. His doctors believe there was a sinus infection that the ENT doc could not see and that was what caused all this. Graham FINALLY is on the bandwagon that stress and anxiety causes him to crash like this and has promised to take his Xanax regularly. And then something happened I fully did not anticipate - he came home. After a week in the hospital, and really not much change in his health (Xanax really did help), he was released and came home to us. He is still on IV antibiotics, he has atrocious headaches, still feels like crap; but he's home...and that gives a much needed smile on our face.
I rode in the front of the Ambulance and they assured me Graham was fine in the back. I am an ADHD shiny button obsessed person - I see it, I press it. So the fact that I don't even remember the mass amount of fun buttons in the cab only reminds me of how frozen I was. I did not believe his number was up, but I had a feeling he would never be home again. The driver was awesome. He kept me calm and kept it light. He is about the same age as me and from Burleson, back when we were in High School, it too was a small town like Cleburne and we began reminiscing about those days. It turns out his nephew died of CF at a really young age and this ride to Dallas hit close to home for him. And since I get to drive to Baylor Dallas so often, I got to take him my way!
In the ER (oddly enough, we got the same room as the last visit), Graham's stats and tests were not looking great and the Drs initial thought was to put him in ICU - ummmmmm, that did not please Graham and he was hell bent on fixing that. If he could move from a mask on 15L of O2 to a nasal cannula on 5L of O2, they would admit him onto the regular floor. Positive: his lungs looked great! Better than the last visit. Negative: his white blood count was up and it was most likely stemming from whatever was going on in his mouth; and his CO2 levels were high too. He was able to move down on the oxygen and he was moved to 10Roberts - our home away from home.
CT Scans and X-rays were ordered on his face along with a visit from the ENT doc. Nothing was found. His doctors believe there was a sinus infection that the ENT doc could not see and that was what caused all this. Graham FINALLY is on the bandwagon that stress and anxiety causes him to crash like this and has promised to take his Xanax regularly. And then something happened I fully did not anticipate - he came home. After a week in the hospital, and really not much change in his health (Xanax really did help), he was released and came home to us. He is still on IV antibiotics, he has atrocious headaches, still feels like crap; but he's home...and that gives a much needed smile on our face.
Merry Christmas
If I were to choose a favorite holiday, Christmas would be one of the top ones. Technically, any holiday that I am surrounded by family, food and chaos - I love! Thanksgiving this year was small and quiet (AWESOME FOOD) without any hustle and bustle. As nice as it was, it didn't feel like a holiday to me. So BRING ON Christmas. Typically our house is filled with decorations that make it look as if Santa barfed all over it and outdoors is lit up as if Clark Griswald lives here (I'm in charge of indoors and Graham outdoors); but thanks to all the stress of our everyday life and the damn armadillo that ate through our outdoor electrical wires, we toned it down this year. No worries, we were still festive. Graham was even able to help a little - he shopped online on his phone while laying in bed :)
On Christmas Day we were definitely blessed with God, Jesus' birth, family, food and the chaos that I love (Graham, not so much). Both our parents were able to join us for the entire day, my brother Bryan and his family came fore dinner, and I was able to speak to my other brother Scott. Things were broken, people laughed and yelled, toys got lost in neighbors yards, food was gobbled up, wine was drank, kids played and played and played, gifts were given and received, our Lord was praised, our dog was tired, nerves were shot....it was a PERFECT and FABULOUS day and I would not have it ANY other way.
The best part of the day, Jordy secretly made each of us a gift. Each gift had so much thought and love in them. I could not be more proud of her and who she is becoming.
Merry Christmas and Happy New Year!
On Christmas Day we were definitely blessed with God, Jesus' birth, family, food and the chaos that I love (Graham, not so much). Both our parents were able to join us for the entire day, my brother Bryan and his family came fore dinner, and I was able to speak to my other brother Scott. Things were broken, people laughed and yelled, toys got lost in neighbors yards, food was gobbled up, wine was drank, kids played and played and played, gifts were given and received, our Lord was praised, our dog was tired, nerves were shot....it was a PERFECT and FABULOUS day and I would not have it ANY other way.
The best part of the day, Jordy secretly made each of us a gift. Each gift had so much thought and love in them. I could not be more proud of her and who she is becoming.
Merry Christmas and Happy New Year!
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