We've become sadly accustomed to bad news about Babygirl's health. Each time we get hit with something new, there is a process of absorption. I think, for myself at least, that I no longer run through all of the five stages of grief every single time anymore. It's not that we don't need to grieve. We do. We just don't have the energy.
At this point, my imagination sees Babygirl's health as a big dirty pond. We are riding a leaky raft and trying to stay afloat and drain the pond at the same time. We clean up one area, drain it out; then it rains, it refills, and we carry on. Floods come and go. The raft leaks, we bail, mend and move on. And we periodically re-accept the reality of the situation - there is no real way out. As God said to Noah (via Bill Cosby), "How long can YOU tread water?"
The best we can do with any new piece of bad news is to let it settle to the bottom of the pond with all the other muck and keep paddling.
DeeDee
Tuesday, February 12, 2013
Saturday, February 9, 2013
The Conversation......
Heart attack. Pneumonia. Parkinson's disease. COPD.
It's not a good line up. They are transferring my dad to the big city tomorrow for cardiac catheterization. He had six bypasses 13 years ago, and has a pacemaker/defibrillator in place. He's tired. He's discouraged. And he knows that the Parkinson's is going to continue to limit his mobility and his independence.
"How do I go about getting a DNR order?"
Sigh. It's not that he's giving up entirely. He wants to have the cath done, although he's not sure what he'll decide to do if they need to do surgery instead of, say, angioplasty or stents. He's taking his meds, but he's ready to make the tough choices.
It turns out he doesn't have a health care proxy. He's never thought about things like ventilators, feeding tubes, hydration, vegetative states. And he wasn't up to discussing all of it, but he's thinking about it.
So now I have yet another health care proxy form in my collection. And there's a DNR order on his chart.
Sigh.
DeeDee
It's not a good line up. They are transferring my dad to the big city tomorrow for cardiac catheterization. He had six bypasses 13 years ago, and has a pacemaker/defibrillator in place. He's tired. He's discouraged. And he knows that the Parkinson's is going to continue to limit his mobility and his independence.
"How do I go about getting a DNR order?"
Sigh. It's not that he's giving up entirely. He wants to have the cath done, although he's not sure what he'll decide to do if they need to do surgery instead of, say, angioplasty or stents. He's taking his meds, but he's ready to make the tough choices.
It turns out he doesn't have a health care proxy. He's never thought about things like ventilators, feeding tubes, hydration, vegetative states. And he wasn't up to discussing all of it, but he's thinking about it.
So now I have yet another health care proxy form in my collection. And there's a DNR order on his chart.
Sigh.
DeeDee
Friday, February 8, 2013
Week Ninety-three - A Bolt From the Blue.....
Did you know that lightening can strike on a blue-sky sunny day? It isn't common, but when it happens it is called a "bolt from the blue." It's name has become synonymous with uexpected events, but most people fail to remember that it still means "I've been struck by lightening." Struck by a Bolt on a bright, sunny, safe day.
Phone calls can bring such strikes.
Dr B. called me right before lunchtime. I had already received Babygirl's Monday lab results from the team, and although no one was happy with her creatinine, the plan was to observe and repeat in two weeks. So an unexpected call from the transplant lead physician sent my heart straight up into my throat.
"You know that we periodically check for antibodies that would indicate that Babygirl's immune system is reacting to the kidney transplant." Yup, I know. And last I knew there weren't any. Apparently I was under-informed. The first couple of times they tested there were no antibodies. Last time, there were a few. This time, the number has risen. This is not good. Babygirl's immune system knows that the kidney is there and is preparing to destroy it.
The call was informational only. Nothing will be done at this time, and the kidney will be observed for additional signs of stress (protein in the urine, increasing creatinine). In time (when, he couldn't say) she will need another biopsy. Based on results, they will institute more aggressive therapy. The plan is to remove the antibodies from her bloodstream using plasmapheresis, the same basic technique that the Red Cross uses to harvest platelets from donors. Then they will inject her with anti-antibody antibodies (follow that?) to remove more of them. Then there is another medication they can use, but they'd rather not.....
Bottom line: Rejection is inevitable.
This, of course, was true from the moment the kidney was placed. The time frame was unknown, but all transplanted kidneys eventually die. Now it seems unlikely that we'll be the ones who keep a kidney for 15+ years. And no, this information did not come with a useful timeline. It's not Dr. B's style to be pessimistic or discouraging, but I know bad news when I hear it.
I'm guessing that the real purpose of this call was to give me lead time. Any time a doctor gives a patient bad news, every bit of information that follows resembles a lecture by Charlie Brown's teacher: Wah Wha, wahwha wah wah wha. I'll be able to hear better and follow instructions more accurately if I get that reaction out of the way BEFORE our next visit. I'll be easier to deal with if I get hysterical on my own time and get it over with. Or something like that.
This is not easy news to digest. especially since it was my second Bolt in less than one day: My dad had a heart attack yesterday and is in the hospital, also fighting pneumonia. We're in the midst of Winter Storm Nemo - who knows if I'll be able to make the four-hour run into the snow belt tomorrow.
DeeDee
Phone calls can bring such strikes.
Dr B. called me right before lunchtime. I had already received Babygirl's Monday lab results from the team, and although no one was happy with her creatinine, the plan was to observe and repeat in two weeks. So an unexpected call from the transplant lead physician sent my heart straight up into my throat.
"You know that we periodically check for antibodies that would indicate that Babygirl's immune system is reacting to the kidney transplant." Yup, I know. And last I knew there weren't any. Apparently I was under-informed. The first couple of times they tested there were no antibodies. Last time, there were a few. This time, the number has risen. This is not good. Babygirl's immune system knows that the kidney is there and is preparing to destroy it.
The call was informational only. Nothing will be done at this time, and the kidney will be observed for additional signs of stress (protein in the urine, increasing creatinine). In time (when, he couldn't say) she will need another biopsy. Based on results, they will institute more aggressive therapy. The plan is to remove the antibodies from her bloodstream using plasmapheresis, the same basic technique that the Red Cross uses to harvest platelets from donors. Then they will inject her with anti-antibody antibodies (follow that?) to remove more of them. Then there is another medication they can use, but they'd rather not.....
Bottom line: Rejection is inevitable.
This, of course, was true from the moment the kidney was placed. The time frame was unknown, but all transplanted kidneys eventually die. Now it seems unlikely that we'll be the ones who keep a kidney for 15+ years. And no, this information did not come with a useful timeline. It's not Dr. B's style to be pessimistic or discouraging, but I know bad news when I hear it.
I'm guessing that the real purpose of this call was to give me lead time. Any time a doctor gives a patient bad news, every bit of information that follows resembles a lecture by Charlie Brown's teacher: Wah Wha, wahwha wah wah wha. I'll be able to hear better and follow instructions more accurately if I get that reaction out of the way BEFORE our next visit. I'll be easier to deal with if I get hysterical on my own time and get it over with. Or something like that.
This is not easy news to digest. especially since it was my second Bolt in less than one day: My dad had a heart attack yesterday and is in the hospital, also fighting pneumonia. We're in the midst of Winter Storm Nemo - who knows if I'll be able to make the four-hour run into the snow belt tomorrow.
DeeDee
Wednesday, February 6, 2013
Frequency.....
Those of us who regularly ask people to rank their pain severity understand the limitations of the 1 - 10 pain scale. A lot of people just don't get it. I hear daily, "It's more than a ten." "It's a one hundred." Clearly, if ten represents "the worst pain imaginable," there cannot be a higher number. Three or less is pain you can live with without difficulty. Four to seven interfere with daily activities in a significant way. Eight to ten puts you down. There's no functioning with a ten.
I looked throught Babygirl's headache diary calendar this morning, full of the big black "X" marks that signify headaches greater than five on the one-to-ten pain scale. We started keeping track in November.
In November, she had five days that did not have X's. In December, six. January was better, with eleven days without five-plus headaches. That's headaches 82% of the time for two months, and "only" 66% in the "good" month. Of course, if she had 11 days headache-free in November and December, and 11 in January alone, one could argue that this represents a 100% improvement. Or not.
Please keep in mind that on the vast majority of the unmarked days, she rated her headache at four or less. Literally translated, that means that almost NONE of the days were truly headache-free. She had more than one stretch of five-plus headaches that ran for twelve days in a row. Twelve. Days. And remember, she's got a REAL pain scale. She truly 'gets' what the numbers mean in terms of both intensity and function. Most of her headaches are in the 6 - 8 range.
February is looking about 50/50 so far. School Monday, home yesterday and today. It's not good, but it's better.
It still doesn't seem like it should be this hard.
DeeDee
I looked throught Babygirl's headache diary calendar this morning, full of the big black "X" marks that signify headaches greater than five on the one-to-ten pain scale. We started keeping track in November.
In November, she had five days that did not have X's. In December, six. January was better, with eleven days without five-plus headaches. That's headaches 82% of the time for two months, and "only" 66% in the "good" month. Of course, if she had 11 days headache-free in November and December, and 11 in January alone, one could argue that this represents a 100% improvement. Or not.
Please keep in mind that on the vast majority of the unmarked days, she rated her headache at four or less. Literally translated, that means that almost NONE of the days were truly headache-free. She had more than one stretch of five-plus headaches that ran for twelve days in a row. Twelve. Days. And remember, she's got a REAL pain scale. She truly 'gets' what the numbers mean in terms of both intensity and function. Most of her headaches are in the 6 - 8 range.
February is looking about 50/50 so far. School Monday, home yesterday and today. It's not good, but it's better.
It still doesn't seem like it should be this hard.
DeeDee
Tuesday, February 5, 2013
Creatinine Update....
Babygirl had blood work done on Monday. Her creatinine is 1.3. While that IS an improvement (barely) from last weeks' 1.4, it still stinks.
But the transplant team deserves some credit here. They asked how the headaches were doing. They respected the fact that SHE'S doing better even if the kidney isn't. They told us to keep an eye on her and to come in as scheduled in two weeks with no additional interim blood testing.
They believe that a functioning child is at least as important as a functioning kidney. They're willing to wait it out for a bit, thank God.
I called to schedule her next neurology appointment to try to match it up to nephrology. They wanted her to come on Wednesday, two days later. Ummmm.....no. And then they said never mind, come in two months. But I can't schedule THAT until two weeks ahead.....
Seriously? And that call took just over 18 minutes.
In other news, I stumbled over this blog today: http://oknak.wordpress.com/tag/scott-parker/. It's a rather interesting view of pediatric transplantation in England. Their journey makes ours look like a well-coordinated cake walk.
You don't have to look far to find people who are suffering at least as much as you are, if not more so.
DeeDee
But the transplant team deserves some credit here. They asked how the headaches were doing. They respected the fact that SHE'S doing better even if the kidney isn't. They told us to keep an eye on her and to come in as scheduled in two weeks with no additional interim blood testing.
They believe that a functioning child is at least as important as a functioning kidney. They're willing to wait it out for a bit, thank God.
I called to schedule her next neurology appointment to try to match it up to nephrology. They wanted her to come on Wednesday, two days later. Ummmm.....no. And then they said never mind, come in two months. But I can't schedule THAT until two weeks ahead.....
Seriously? And that call took just over 18 minutes.
In other news, I stumbled over this blog today: http://oknak.wordpress.com/tag/scott-parker/. It's a rather interesting view of pediatric transplantation in England. Their journey makes ours look like a well-coordinated cake walk.
You don't have to look far to find people who are suffering at least as much as you are, if not more so.
DeeDee
Monday, February 4, 2013
And a Year of Rejoicing.....
Happy New Kidney Day, Babygirl!
Last year we watched the Superbowl only moments after being discharged from the ICU. Babygirl had the astonishing four-gang IV pole and innumerable bags, drips, pumps, monitors all still doing their thing. We shared homemade lasagna and veggies with nurses and family and rejoiced despite our exhaustion.
While the year has had significant ups and downs, I remain optimistic and hopeful about Babygirl. While she hasn't been up for skiing yet this year, her headaches ARE calming down and she is resuming some more normal activities. She attended school two days last week, and would have managed three if there hadn't been a snow day.
Yesterday she went to the movies with friends. This morning she is headache-free.
Miracles aren't the big things, they are the ability to enjoy the small, everyday things. So many times in our lives we are deceived into believing that our happiness depends on some future event - going on vacation, getting a bigger and better house, keeping up with the Jones', winning the lottery.
If this past 93 weeks have taught me nothing except to appreciate and rejoice in what I have, then I am truly blessed. I have joked that the key to a great day is to lower your expectations, but I don't mean that exactly. The key to a great day is gratitude for all you have. Gratitude for family, food, fellowship and fun. Gratitude for the laughter that peeks in and out of your days. Gratitude for one more day.
We aren't football fans, really, but we like the Superbowl. This year it was just Hubby, Babygirl and I (apparently we simply forgot to plan a party LOL). We randomly decided to cheer for the 49ers and were rewarded with something to scream about at the end. We laughed like loons at the commercials and ate KFC for dinner. Our team lost and we simply didn't care. We sympathized heavily with the coaches' parents. No one had a tougher day than they did!
My goal for our second transplant year is to try to find something to cheer about every day. It's not hard to find such things, it's just sometimes harder to NOTICE them.
Movies with friends - YAY!!!!!! Headache-free - YAY!!!!!
New kidney survived to the critical one-year mark - YAY!!!!!!!!!
DeeDee
Last year we watched the Superbowl only moments after being discharged from the ICU. Babygirl had the astonishing four-gang IV pole and innumerable bags, drips, pumps, monitors all still doing their thing. We shared homemade lasagna and veggies with nurses and family and rejoiced despite our exhaustion.
While the year has had significant ups and downs, I remain optimistic and hopeful about Babygirl. While she hasn't been up for skiing yet this year, her headaches ARE calming down and she is resuming some more normal activities. She attended school two days last week, and would have managed three if there hadn't been a snow day.
Yesterday she went to the movies with friends. This morning she is headache-free.
Miracles aren't the big things, they are the ability to enjoy the small, everyday things. So many times in our lives we are deceived into believing that our happiness depends on some future event - going on vacation, getting a bigger and better house, keeping up with the Jones', winning the lottery.
If this past 93 weeks have taught me nothing except to appreciate and rejoice in what I have, then I am truly blessed. I have joked that the key to a great day is to lower your expectations, but I don't mean that exactly. The key to a great day is gratitude for all you have. Gratitude for family, food, fellowship and fun. Gratitude for the laughter that peeks in and out of your days. Gratitude for one more day.
We aren't football fans, really, but we like the Superbowl. This year it was just Hubby, Babygirl and I (apparently we simply forgot to plan a party LOL). We randomly decided to cheer for the 49ers and were rewarded with something to scream about at the end. We laughed like loons at the commercials and ate KFC for dinner. Our team lost and we simply didn't care. We sympathized heavily with the coaches' parents. No one had a tougher day than they did!
My goal for our second transplant year is to try to find something to cheer about every day. It's not hard to find such things, it's just sometimes harder to NOTICE them.
Movies with friends - YAY!!!!!! Headache-free - YAY!!!!!
New kidney survived to the critical one-year mark - YAY!!!!!!!!!
DeeDee
Sunday, February 3, 2013
Week Ninety-two - A Year of Grief....
One year ago today Jorge's family was saying a long, difficult good-bye. One year ago this morning we received our "Drop everything and DRIVE" phone call. At least five other families got the same call. Lord willing, all six of our families are celebrating the amazing milestone of one-year transplant survival today and tomorrow (for us, it is technically tomorrow, since Babygirl's surgery ran overnight and she actually received her transplant on the 4th).
But for Jorge's family this cannot be a day of celebration. My heart absolutely aches for them. A good friend of mine just passed the one-year date of the death of her baby boy. As amazingly strong as she is, it was a week of intense suffering layered onto a year of agony. Watching her grief mix with her unmistakable determination to honor the life of her little boy has given me a clear window into the heart of grief - the kind of grief every parent dreads. The kind we have been blessed to keep at bay now for the ninety-two weeks since Babygirl's diagnosis. The kind of grief we know can lie ahead without warning for any parent, and especially for those of us who raise children with fragile health.
Jorge's family has been heavily in my thoughts and prayers all week. I thank God for them, for the difficult choices they made when they realized his death was inevitable. Pray God I am strong enough (if, God forbid, I must ever make such choices) that I would do the same.
Bless them, Lord. Hold them tight in the palm of Your hand. Grant them peace and rest, as we know you already given to Jorge.
DeeDee
But for Jorge's family this cannot be a day of celebration. My heart absolutely aches for them. A good friend of mine just passed the one-year date of the death of her baby boy. As amazingly strong as she is, it was a week of intense suffering layered onto a year of agony. Watching her grief mix with her unmistakable determination to honor the life of her little boy has given me a clear window into the heart of grief - the kind of grief every parent dreads. The kind we have been blessed to keep at bay now for the ninety-two weeks since Babygirl's diagnosis. The kind of grief we know can lie ahead without warning for any parent, and especially for those of us who raise children with fragile health.
Jorge's family has been heavily in my thoughts and prayers all week. I thank God for them, for the difficult choices they made when they realized his death was inevitable. Pray God I am strong enough (if, God forbid, I must ever make such choices) that I would do the same.
Bless them, Lord. Hold them tight in the palm of Your hand. Grant them peace and rest, as we know you already given to Jorge.
DeeDee
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