Babygirl's been sick for more than a year now. I've been worried, saddened, angered and disappointed. I've had a million emotions, but until this week I think I really did not have Fear.
I've felt it before. There was the day, in the midst of CityGirl's non-eating phase, when I saw her jump up to catch a ball during a game. She missed, and went down like a bag of bones. There was the day, when CurlyGirl was 9, when nothing I did seemed to make her breathe better, and the moment came where I could see in her eyes that SHE, my most courageous child, was terrified that she might not be able to get her next breath.
But both of those times the fear was motivating. It made me alert to the risks, and more able to take action. It wasn't like this. This is paralysing.
I've always thought that it's tougher to be a parent when you know what can go wrong. Kids with eating disorders and asthma die, for sure. But with those kids, the diseases came under control eventually, and it felt like I could fight it all and win somehow.
In this situation I have to face up to the fact that it is the very decisions we are making in her best medical interest that are risking her life and health. This illness, this hospitalization, were caused by medications given ostensibly to save her life. Medications which, when used entirely according to directions, can in and of themselves be life-threatening. And right now, despite stopping those medications, her numbers look worse today than yesterday. If things pick up we may go home tomorrow. Or not. And there is now way she's going to school for at least a week, maybe two.
I have never seen the fight so taken out of a child. I never expected my Babygirl to look so beaten. I have never, in all the time she's been ill, heard her say, "I really just want to go home to my own bed," especially not with that desperate catch in her voice. Until this time.
I make these kinds of decisions for and with patients all the time. ALL the time. I'm not sure how I'll be able to organize my mind to continue doing so.
DeeDee
Showing posts with label infections. Show all posts
Showing posts with label infections. Show all posts
Saturday, April 28, 2012
Friday, April 27, 2012
It's Like Having AIDS......
People have been in touch, but the computer here is so slow that I can barely load FaceBook, let alone view the comments! Text messages are going out in groups, and coming back in droves. But some of the questions are fairly universal:
Have they figured out what is wrong yet? Nope. This is really a two part question - first, what is causing the fever? Meds? Virus? Bacteria? Fungus? Parasite? and second, what is causing the drop in her white count? Meds? If so, which one(s)? Virus? Again, if so, which one? Whatever is causing the fever is resolving, but since we don't know WHAT caused it, we don't know if it's going away because of what we are doing or 'just because.'
How is she doing? Better. The good news is she ordered chocolate chip pancakes for breakfast. The bad new is that she could only eat one bite and has been doing only clear liquids since. The best news is that there has been no more vomiting, so the Boulevard prayer shawl is still in business!
Is this a sign that she is rejecting the kidney? No. The kidney is managing pretty well and appears not to be involved in the fever in any way.
How serious is this? Very. At this point in time her immune system is functioning just as poorly as someone with full-blown AIDS. Staff entering the room have to wear masks to decrease her exposure to their germs, and she has to wear a mask if she leaves the room for any reason.
What's the plan? They are starting her on Neupogen, which like its cousin Epogen, encourages the bone marrow, only this one pushes out Neutrophils. They have stopped one medication, decreased another, are stopping a third (and possibly a fourth) tomorrow. We stay until her immune system starts to pick back up.
How long do you think you'll be there?
As long as it takes.
DeeDee
Have they figured out what is wrong yet? Nope. This is really a two part question - first, what is causing the fever? Meds? Virus? Bacteria? Fungus? Parasite? and second, what is causing the drop in her white count? Meds? If so, which one(s)? Virus? Again, if so, which one? Whatever is causing the fever is resolving, but since we don't know WHAT caused it, we don't know if it's going away because of what we are doing or 'just because.'
How is she doing? Better. The good news is she ordered chocolate chip pancakes for breakfast. The bad new is that she could only eat one bite and has been doing only clear liquids since. The best news is that there has been no more vomiting, so the Boulevard prayer shawl is still in business!
Is this a sign that she is rejecting the kidney? No. The kidney is managing pretty well and appears not to be involved in the fever in any way.
How serious is this? Very. At this point in time her immune system is functioning just as poorly as someone with full-blown AIDS. Staff entering the room have to wear masks to decrease her exposure to their germs, and she has to wear a mask if she leaves the room for any reason.
What's the plan? They are starting her on Neupogen, which like its cousin Epogen, encourages the bone marrow, only this one pushes out Neutrophils. They have stopped one medication, decreased another, are stopping a third (and possibly a fourth) tomorrow. We stay until her immune system starts to pick back up.
How long do you think you'll be there?
As long as it takes.
DeeDee
Thursday, April 26, 2012
You Need Your Neutrophils....
Babygirl woke up this morning crying. Her head hurt, her legs hurt, her whole body hurt and she was FREEZING.
Her temperature was over 103. A call to the kidney specialists told me what I already knew: "Take her to the nearest ER."
We gave her her meds, ate breakfast (well, not her - she wasn't hungry), got dressed (comfy is important) and got into the car. She threw up, saturating the prayer shawl we'd brought along for warmth (sorry, Lynn). I ran into the house for a Ziploc bag and a new blanket. By the time we hit the ER that one had to be put into a plastic bag to be laundered also (sorry, Main St crew!).
Blood work. CAT scan. Morphine and Tylenol. Anti-emetics. Repeat the vomitted meds. Poke, prod, poke. WBC count down to 0.7, beyond critically low.
At noon, none the wiser about the cause of the fever but increasingly concerned about her inability to fight off whatever was causing it, we were loaded into an ambulance for a ride back to CHOP. We had time to pack, and I rode shotgun while Hubby drove the chase car.
By 4:30 we had finished a quick eval in CHOP's ER and were admitted to the floor. Poke, prod, poke, repeat. Discuss options. Consider additional testing. Start dangerously potent antibiotics.
Right now Babygirl is sleeping, Hubby is at Sister-in-law's house, and we're all still in the dark about where the infection is and what's causing it. The good news is we are surrounded by prayer from all around the country.
But I have never seen her look so sick.
DeeDee
Her temperature was over 103. A call to the kidney specialists told me what I already knew: "Take her to the nearest ER."
We gave her her meds, ate breakfast (well, not her - she wasn't hungry), got dressed (comfy is important) and got into the car. She threw up, saturating the prayer shawl we'd brought along for warmth (sorry, Lynn). I ran into the house for a Ziploc bag and a new blanket. By the time we hit the ER that one had to be put into a plastic bag to be laundered also (sorry, Main St crew!).
Blood work. CAT scan. Morphine and Tylenol. Anti-emetics. Repeat the vomitted meds. Poke, prod, poke. WBC count down to 0.7, beyond critically low.
At noon, none the wiser about the cause of the fever but increasingly concerned about her inability to fight off whatever was causing it, we were loaded into an ambulance for a ride back to CHOP. We had time to pack, and I rode shotgun while Hubby drove the chase car.
By 4:30 we had finished a quick eval in CHOP's ER and were admitted to the floor. Poke, prod, poke, repeat. Discuss options. Consider additional testing. Start dangerously potent antibiotics.
Right now Babygirl is sleeping, Hubby is at Sister-in-law's house, and we're all still in the dark about where the infection is and what's causing it. The good news is we are surrounded by prayer from all around the country.
But I have never seen her look so sick.
DeeDee
Monday, February 13, 2012
Let's Suppress the Immune System!........
Every once in a while nearly everybody has one of those, "I really didn't think this through too well..." moments. Like when my brother, holding a bag of frozen peas at the top, used a letter opener to cut the bag. Completely across. We had to pick a new veggie for dinner, and I was finding peas in corners for weeks.
Some parts of kidney transplantation feel a bit like this. The good news is, we have a working kidney! The bad news is, we have to make her body not notice that it's new! While she was in ICU they gave her medication to a wipe out a large percentage of her infection-fighting white blood cells, and now we are suppressing the rest of her immune system with three really toxic drugs, all to make the new kidney "invisible."
For the kidney this is a great idea. If we fail to do this, her body will recognize that this is not her original kidney, and do it's darnedest to kill it quickly. For the kid, this is NOT a great idea. If her immune system can overlook two pounds of fresh kidney, it's also likely to overlook a few small viruses, some bacteria, and a fungus or two. If it does, she gets sick. Really, really sick. Maybe deathly sick.
For the time being we are avoiding exposure to new germs. We don't go shopping, won't go to the library, turned down an offer (difficult as you can imagine it was!) to tour the Three Stooges Museum. A trip to the local pharmacy for lip balm (after all, she can't share MINE anymore!) required extra layers for warmth and a face mask. We timed the trip for ten AM Sunday to avoid crowds, and succeeded. I am teaching Babygirl to spell all her meds, and to learn what each of the nine medications are for. Eventually she will learn the doses as well, but since the doctors are still adjusting doses, I'm waiting on that.
The hardest part of all of this is not teaching Babygirl to be careful. It's not teaching her about her medications. It's educating everybody around her! Her school wants to do her "home teaching" AT THE SCHOOL, or at the local library. Seriously? We have had several kind invitations to go out for dinner. Um, thanks, no can do. It's a bit difficult to wear a mask and eat at the same time.
This is one of those things that I am discovering is a lay person-versus-medical person thing. Like the "Are BOTH of her kidneys failing?" question (yes, of course, you only need one functioning kidney and she has neither), the "Can you take your immunosuppressed kid out to dinner?" question seems to have an obvious answer to ME that is clearly not obvious to everybody else.
Three of her new medications are for infection prevention. But there is no way that only three medications can prevent thousands of infectious diseases. Her vaccinations help. Her innate good health is certainly beneficial. But the single best thing we can do for her is to keep her away from any NEW germs. And for that, we mostly stay home.
So stop by, if you are healthy. Use the hand sanitizer by the door. Bring a meal? Thanks, but check with us about what's okay to eat THIS week, since it has totally changed since LAST week! And leave the little kids home. They are adorable germ incubators on feet.
DeeDee
Some parts of kidney transplantation feel a bit like this. The good news is, we have a working kidney! The bad news is, we have to make her body not notice that it's new! While she was in ICU they gave her medication to a wipe out a large percentage of her infection-fighting white blood cells, and now we are suppressing the rest of her immune system with three really toxic drugs, all to make the new kidney "invisible."
For the kidney this is a great idea. If we fail to do this, her body will recognize that this is not her original kidney, and do it's darnedest to kill it quickly. For the kid, this is NOT a great idea. If her immune system can overlook two pounds of fresh kidney, it's also likely to overlook a few small viruses, some bacteria, and a fungus or two. If it does, she gets sick. Really, really sick. Maybe deathly sick.
For the time being we are avoiding exposure to new germs. We don't go shopping, won't go to the library, turned down an offer (difficult as you can imagine it was!) to tour the Three Stooges Museum. A trip to the local pharmacy for lip balm (after all, she can't share MINE anymore!) required extra layers for warmth and a face mask. We timed the trip for ten AM Sunday to avoid crowds, and succeeded. I am teaching Babygirl to spell all her meds, and to learn what each of the nine medications are for. Eventually she will learn the doses as well, but since the doctors are still adjusting doses, I'm waiting on that.
The hardest part of all of this is not teaching Babygirl to be careful. It's not teaching her about her medications. It's educating everybody around her! Her school wants to do her "home teaching" AT THE SCHOOL, or at the local library. Seriously? We have had several kind invitations to go out for dinner. Um, thanks, no can do. It's a bit difficult to wear a mask and eat at the same time.
This is one of those things that I am discovering is a lay person-versus-medical person thing. Like the "Are BOTH of her kidneys failing?" question (yes, of course, you only need one functioning kidney and she has neither), the "Can you take your immunosuppressed kid out to dinner?" question seems to have an obvious answer to ME that is clearly not obvious to everybody else.
Three of her new medications are for infection prevention. But there is no way that only three medications can prevent thousands of infectious diseases. Her vaccinations help. Her innate good health is certainly beneficial. But the single best thing we can do for her is to keep her away from any NEW germs. And for that, we mostly stay home.
So stop by, if you are healthy. Use the hand sanitizer by the door. Bring a meal? Thanks, but check with us about what's okay to eat THIS week, since it has totally changed since LAST week! And leave the little kids home. They are adorable germ incubators on feet.
DeeDee
Saturday, January 21, 2012
Fighting the Enemy........
Generally speaking, I don't believe in germs. I mean, really? Okay, so I get a cold here and there, and the odd UTI. But on a day-to-day basis I really can't afford to believe in germs. After all, I'm a doctor, and if I believed in them I'd be exposed to about a bajillion of the little suckers EVERY DAY! And that would mean I'd be sick all the time!!
This philosophy is, sadly, reflected in my housekeeping. I really don't see dust (I know, usually a male trait, but hey). Moving the couch to hunt for dust bunnies? Why not just let 'em mature and scoot out on their own? And I truly believe in the "Ten Second Rule." My kids routinely chanted, "God made dirt and dirt don't hurt!" when we were out camping.
But now I am being forced to believe. Those dialysis Grinches keep hounding us on the subject, making me actually LOOK for germs every single evening when I hook Babygirl up to her machine. "Is the fluid clear???" And they make me check again in the morning. "What's her temperature?" Okay, so they aren't actually here, but we have to write this stuff down on a flow chart every day. And a part of me thinks, "If we look hard enough, we're gonna find those germs!"
So now, all of a sudden, at the age of fifty-three I have to become a good housekeeper. No, a great housekeeper. A germophobic housekeeper! To quote Babygirl, "O M G." I have to develop a system.
I should have been well trained for this. My Mom was the Queen of System. I have no idea how she did what she did - she raised us, worked (part time when we were little and full time later, and that was third shift), and kept a very tidy house. She really did have a schedule of some sort fixed in her head, and it included things that still mystify me. I mean really, wash the windows? Six times a YEAR?
I am trying to visualize all of that. Trying to figure out why I didn't inherit The System. I mean, I know my Mom was a much younger mom than I am, but come on! How hard can it be?
Sigh. Hard. Really hard. I am at the office nine hours Monday, Tuesday, Thursday and Friday. Wednesdays I have been spending managing doctor's appointments for me, Babygirl, and my Mom. I also dedicate time to managing our finances, and negotiating with insurance companies, and grocery shopping. I do two loads of laundry daily (and we have a double loader, so make it four). Hubby and I both prep and cook depending on the day.
Saturday has become cleaning day. I used to do things like go skiing, read books, catch up on Facebook...... Now? I am working on a system. Each and every room was truly in desperate need of a deep cleaning, the kind where you empty the closet and scrub the shelves. This has been done. Now it's upkeep. And I keep noticing things I didn't see before, fingerprints on door frames, the thick trail of grime on the stairway wall. I think I was happier when I didn't SEE this stuff. So each time I clean, it actually takes a little LONGER, because I am being more thorough.
I am experimenting with cleaning products, figuring out which things are easiest to use, most cost effective, and best at killing our invisible enemy. And I am seeing, truly seeing, why this is so important. I expected her to have some trouble AFTER the transplant. After all, then they will be deliberately suppressing her immune system, and the germs will definitely have the home court advantage. What I never expected was how susceptible she'd be NOW, just because her kidneys aren't working.
Babygirl had four years of perfect attendance in elementary school. Rarely had a sniffle, caught the occasional strep throat and recovered in a day. But here in her first year of middle school she has missed six days of school due to illness. And she has a cold again now, her third so far this year. No one else in the house has been sick at all.
This enemy is ugly. Relentless. Deadly.
I guess I'm a believer now.
DeeDee
This philosophy is, sadly, reflected in my housekeeping. I really don't see dust (I know, usually a male trait, but hey). Moving the couch to hunt for dust bunnies? Why not just let 'em mature and scoot out on their own? And I truly believe in the "Ten Second Rule." My kids routinely chanted, "God made dirt and dirt don't hurt!" when we were out camping.
But now I am being forced to believe. Those dialysis Grinches keep hounding us on the subject, making me actually LOOK for germs every single evening when I hook Babygirl up to her machine. "Is the fluid clear???" And they make me check again in the morning. "What's her temperature?" Okay, so they aren't actually here, but we have to write this stuff down on a flow chart every day. And a part of me thinks, "If we look hard enough, we're gonna find those germs!"
So now, all of a sudden, at the age of fifty-three I have to become a good housekeeper. No, a great housekeeper. A germophobic housekeeper! To quote Babygirl, "O M G." I have to develop a system.
I should have been well trained for this. My Mom was the Queen of System. I have no idea how she did what she did - she raised us, worked (part time when we were little and full time later, and that was third shift), and kept a very tidy house. She really did have a schedule of some sort fixed in her head, and it included things that still mystify me. I mean really, wash the windows? Six times a YEAR?
I am trying to visualize all of that. Trying to figure out why I didn't inherit The System. I mean, I know my Mom was a much younger mom than I am, but come on! How hard can it be?
Sigh. Hard. Really hard. I am at the office nine hours Monday, Tuesday, Thursday and Friday. Wednesdays I have been spending managing doctor's appointments for me, Babygirl, and my Mom. I also dedicate time to managing our finances, and negotiating with insurance companies, and grocery shopping. I do two loads of laundry daily (and we have a double loader, so make it four). Hubby and I both prep and cook depending on the day.
Saturday has become cleaning day. I used to do things like go skiing, read books, catch up on Facebook...... Now? I am working on a system. Each and every room was truly in desperate need of a deep cleaning, the kind where you empty the closet and scrub the shelves. This has been done. Now it's upkeep. And I keep noticing things I didn't see before, fingerprints on door frames, the thick trail of grime on the stairway wall. I think I was happier when I didn't SEE this stuff. So each time I clean, it actually takes a little LONGER, because I am being more thorough.
I am experimenting with cleaning products, figuring out which things are easiest to use, most cost effective, and best at killing our invisible enemy. And I am seeing, truly seeing, why this is so important. I expected her to have some trouble AFTER the transplant. After all, then they will be deliberately suppressing her immune system, and the germs will definitely have the home court advantage. What I never expected was how susceptible she'd be NOW, just because her kidneys aren't working.
Babygirl had four years of perfect attendance in elementary school. Rarely had a sniffle, caught the occasional strep throat and recovered in a day. But here in her first year of middle school she has missed six days of school due to illness. And she has a cold again now, her third so far this year. No one else in the house has been sick at all.
This enemy is ugly. Relentless. Deadly.
I guess I'm a believer now.
DeeDee
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