I finally managed to see my primary care doctor yesterday about the stomach/back/belly pain I've been experiencing. Since I saw her partner for a sick appointment the last time, I had to bring her up to speed on the whole scenario of what happened and what tests I've had so far. Every test has been normal, yet the pains persist.
Of course she asked me what my level of stress has been. I said, "Heh," and briefly outlined what's been going on my personal life for the last three years. She gasped here and there, and stated that it sounded like a traumatizing level of stuff. In addition to giving me a referral to a gastroenterologist, she suggested I should take antidepressants and possibly seek more counseling, since I haven't gone to any therapy since right before Little A's birth.
I expected she'd refer me to a GI doc, but the antidepressant discussion totally threw me. I get that GI problems are often linked to anxiety and stress. I'm absolutely sure some part of my stomach problems are stress, given that they began around the time of Little A's lung CT scan. And I appreciate being asked how I'm coping.
BUT ... the thing is, my doctor didn't actually ask how I was doing. She just listened and said, "You look really sad and tired. And when you were just talking, your body was really tense. You just don't look well. I think you should seek psychological counseling and possibly medication to help your mental state."
"Um ... I am tired," I stammered. "I've been up since five a.m. with my sick toddler. And I'm in pain. For three months."
"Wabi," she said. "I worry that you're a boiling frog."
I wasn't aware of the analogy, so I asked her to explain it.
"If you put a frog in a pot of boiling water, he'll try to jump out immediately. But if you put him in a pot of cold water and warm it up gradually, you can boil that frog alive and he'll just lay there and let you."
My mouth dropped open. There was so much I wanted to say, but it was all jammed up behind a huge WHAT THE FUCK that had to come out first. So I just took the referral and left, mulling and simmering for the rest of the day.
Seriously though, WHAT THE FUCK?
1) Is she saying that I'm a retarded frog just happily paddling around the boiling water, completely oblivious to the roil? Because I kind of recall telling her that I was well aware I was under lots of stress.
2) Doesn't the frog die in either scenario of the analogy?
I bet I did look stressed telling about my life. But frankly, it would have been a little bit less awkward and, well, stressful if my doctor seemed to have any memory of our last exchange about these subjects. Because we've talked about my medical history before. Then I must have done a better job at keeping my voice from cracking, because the other time her reaction was, "SQUEEEEE! Weird medical mishaps -- tell me all the details!"
Which was also disconcerting. For different reasons.
I'm the first to admit that the last couple months I haven't been twirling on a mountaintop singing with Julie Andrews. Aside from a fabulous summer, 2008 sucked. And lord knows, I've got my scars and mental tics. But I also don't drink heavily, snort coke, or smoke anything. I don't beat the kids or daydream about driving my car into the ocean. I'm basically ok. Functionally disfunctional, and cracking jokes along the way. Enjoying the kids and trying my best.
I thought I was some sort of a success at this. Moving on and getting over. And then she went and decreed I wasn't. It made me wonder if I was completely dellusional -- am I just telling myself I'm ok, when I'm really hanging by a thread?
So ... What is your idea of "good mental health" after a trauma and a tragedy? Do you have to be able to talk about it 100 percent of the time without feeling it? Do you have to stop thinking about it, or just stop minding that you think about it?
Showing posts with label house of plague. Show all posts
Showing posts with label house of plague. Show all posts
Thursday, January 22, 2009
Friday, December 5, 2008
The House Whose People Sit in Darkness
The report for Little A's CT scan came back today. The problematic area of her right lung is not a tumor or congenital anomaly. The most likely big bad we dreaded -- bronchiectasis -- got ruled out as well.
So, we're left assuming that this weird patch of lung is scar tissue that developed during Little A's back-t0-back bouts of pneumonia last winter. Scar tissue is great news, as it can reverse in small children. So we'll continue to carefully manage her asthma and try to limit the amount of colds she gets (ha, ha, ha on this last one ... hoo, so funny).
After I talked to the pulminologist I hung up and skipped around the house and high fived Little A 50 times. There is nothing like a toddler to happily indulge a giddy adult in the high fives. Then I put Little A down for her nap and in the silence of the house, found myself crying.
Three years ago today I sat at the desk where I now type this post. The phone rang, and as I stared out the window into the backyard, a perinatologist I'd never met before told me that the baby in my belly had a 1 in 5 shot at having either Trisomy 18 or Trisomy 13. And so it began. The waiting, the hoping, the crushed hopes, the termination, the complications, the marital strain, the depression, the subsequent pregnancy, the pain, the worry, the uterine rupture, the joy of Little A, the medical problems of Little A. Had that call not come in December 2005, what would my life look like now? To be honest, I don't even know how to imagine that scenario anymore. It's all too strange too contemplate.
They say it's not uncommon for people to associate sounds or smells with the moment they receive terrible news. For me, the thing that always pops into my mind when I think of this day in 2005 is The Epic of Gilgamesh. For some reason -- probably because it is shorter than most other Penguin Classics on my shelf -- I happened to be rereading Gilgamesh around the time of that phone conversation. And now the call and the poem remain linked. Especially the passage about Gilgamesh's best bud Enkidu, who dreams of his own death, of going to the palace of the Queen of Darkness, which is described as the house from which no one who enters ever returns, down the road from which there is no coming back:
So, we're left assuming that this weird patch of lung is scar tissue that developed during Little A's back-t0-back bouts of pneumonia last winter. Scar tissue is great news, as it can reverse in small children. So we'll continue to carefully manage her asthma and try to limit the amount of colds she gets (ha, ha, ha on this last one ... hoo, so funny).
After I talked to the pulminologist I hung up and skipped around the house and high fived Little A 50 times. There is nothing like a toddler to happily indulge a giddy adult in the high fives. Then I put Little A down for her nap and in the silence of the house, found myself crying.
Three years ago today I sat at the desk where I now type this post. The phone rang, and as I stared out the window into the backyard, a perinatologist I'd never met before told me that the baby in my belly had a 1 in 5 shot at having either Trisomy 18 or Trisomy 13. And so it began. The waiting, the hoping, the crushed hopes, the termination, the complications, the marital strain, the depression, the subsequent pregnancy, the pain, the worry, the uterine rupture, the joy of Little A, the medical problems of Little A. Had that call not come in December 2005, what would my life look like now? To be honest, I don't even know how to imagine that scenario anymore. It's all too strange too contemplate.
They say it's not uncommon for people to associate sounds or smells with the moment they receive terrible news. For me, the thing that always pops into my mind when I think of this day in 2005 is The Epic of Gilgamesh. For some reason -- probably because it is shorter than most other Penguin Classics on my shelf -- I happened to be rereading Gilgamesh around the time of that phone conversation. And now the call and the poem remain linked. Especially the passage about Gilgamesh's best bud Enkidu, who dreams of his own death, of going to the palace of the Queen of Darkness, which is described as the house from which no one who enters ever returns, down the road from which there is no coming back:
There is the house whose people sit in darkness; dust is their food and clay is their meat. They are clothed like birds with wings for covering, they see no light, they sit in darkness.
It sounded so familiar to me, that Palace of Darkness. I lived next door in the House of Grief for a really long time. Food's just as sucky as it is at the Palace, and the lights are out, too.
But at least the road from the House of Grief runs in two directions. And sometimes you get to walk back out of there and into a real home. You get to turn up the thermostat, flick on the holiday lights, and enjoy a nice cup of tea while you bake cookies. And if the wind is blowing ominously outside, maybe this time you can just ... shut the damn blinds and ignore it, and not have the weather serve up a tornado while you're not looking.
Sometimes you can do this. And today, I am so thankful for that.
Tuesday, November 18, 2008
Hand Me Down
It took about 12 days for me to begin to eat and walk around like a normal person again, but thankfully I'm there now. Maybe the some-random-stomach-virus theory is going pan out after all! But even though I feel functional now (despite having caught Big A's chest cold last week), I still have some sporadic abdominal and pelvic pain. So, I'm going ahead with pursuing the might-be-endometriosis theory with my gynecologist. Endo frightens me because of the cyclical nature of it -- the idea that I might regularly be in as much pain as I was two weeks ago makes me shake and cross myself. On the other hand, if I have another attack that starts just as period begins, at least the mystery will be solved, and we could finally make a real stab at treatment.
I have been feeling on edge and punk in the past month, but given the mystery illness, that wasn't terribly surprising. But it occurred to me that most of the anxiety focused around Little A. Since we are also sorting out her health issues at this time, I figured maybe that was also normal. Still, I didn't understand the intensity of my freakouts. Little A has been doing well on her new meds and there really isn't much reason to be anything other than optimistic about what lies in store for her. So why was my heart hurting so much whenever my little girl toddled by?
While folding laundry the other day I finally figured it out: This black mood had started the day I took the bin of 2T and 24-month clothes out of the garage and incorporated them into Little A's general wardrobe. It's those clothes. The ones Big A wore three years ago when I was pregnant with my angel baby.
I have a hand-me-down hangover.
Who knew that such strong anxiety and grief could imprint on little dresses and pants? There is one particular outfit that looks adorable on Little A (much as it did on her big sister) but every time she flits by wearing it, I'm hit with the knowledge that this was the play dress Big A wore on Christmas 2005, which was just two days after my pregnancy termination. It was all I could do to keep from hurling myself out the picture window that day, and most of the events of that time are thankfully lost to the fog of despair and vicoden. But oh, that dress -- that I remember all too well.
It pisses me off! Not only because Little A looks so adorable in it, but because now that I'm a SAHM, my budget doesn't allow for me going out and buying an equal-but-different dress for Little A. So I'm in a conundrum: do I suck it up and deal with the sadness over seeing the clothes again, or do I donate the old clothes, and hope that people give Little A outfits for Christmas?
Strange and arbitrary. That's what grief is three years after a loss.
I have been feeling on edge and punk in the past month, but given the mystery illness, that wasn't terribly surprising. But it occurred to me that most of the anxiety focused around Little A. Since we are also sorting out her health issues at this time, I figured maybe that was also normal. Still, I didn't understand the intensity of my freakouts. Little A has been doing well on her new meds and there really isn't much reason to be anything other than optimistic about what lies in store for her. So why was my heart hurting so much whenever my little girl toddled by?
While folding laundry the other day I finally figured it out: This black mood had started the day I took the bin of 2T and 24-month clothes out of the garage and incorporated them into Little A's general wardrobe. It's those clothes. The ones Big A wore three years ago when I was pregnant with my angel baby.
I have a hand-me-down hangover.
Who knew that such strong anxiety and grief could imprint on little dresses and pants? There is one particular outfit that looks adorable on Little A (much as it did on her big sister) but every time she flits by wearing it, I'm hit with the knowledge that this was the play dress Big A wore on Christmas 2005, which was just two days after my pregnancy termination. It was all I could do to keep from hurling myself out the picture window that day, and most of the events of that time are thankfully lost to the fog of despair and vicoden. But oh, that dress -- that I remember all too well.
It pisses me off! Not only because Little A looks so adorable in it, but because now that I'm a SAHM, my budget doesn't allow for me going out and buying an equal-but-different dress for Little A. So I'm in a conundrum: do I suck it up and deal with the sadness over seeing the clothes again, or do I donate the old clothes, and hope that people give Little A outfits for Christmas?
Strange and arbitrary. That's what grief is three years after a loss.
Monday, October 6, 2008
Searching for 'The Safe Side'
Little A had a regularly scheduled pulmonary appointment last week. I was almost looking forward to it. It's been over four months since we've had to break out the rescue inhaler to stop an asthma attack. Even two weeks ago, when we had that fast breathing episode with a cold, there was no wheezing present, and radiology declared it wasn't another pneumonia. Plus we made it through a whole vacation without going to the ER, which hasn't happened in over a year. To me, all that was progress. I arrived at the pulmonary clinic expecting to hear "Good job, guys! Those long-acting maintenance asthma meds are doing the trick. Keep dosing her, and see you back in six months."
Which is why I felt pretty smacked upside the head when the pulmonologist talked about how Little A's latest Xrays are oddly grainy in the same place they have been oddly grainy in previous illnesses. He launched into a discussion of right middle lobe syndrome . He also mentioned how he'd like to stick a scope down her lungs to see if there was any goop or other obstruction in there. Depending on what they found, they might culture the goop, biopsy a growth (gulp), or in the case of discovering something she accidentally inhaled into her lungs that got stuck there -- remove the problem.
Not quite the high-five fest I was expecting.
Hearing that a doctor thinks your child's lung is partially collapsed all the time does not make for a happy mommy. And a syndrome is extra difficult to contemplate. I'm not a medical professional, but it seems that the word "syndrome" is medical shorthand for "this grab bag of weirdness impacts the same body part, so let's call call it a single disease, even though it actually has fifty causes and can range from being a little bit annoying to requiring a surgeon to cut out part of your lung."
This would be nerve wracking enough if I had a good relationship with Little A's pulmonologist. But while he is gentle and good natured with children, his communication with me sucks. Each appointment the doctor (let's call him Newbie) spends one minute examining Little A, then buries his face in his laptop while firing off questions and typing answers while I hold Little A. I often wonder why we have to be there for the appointments after the nurse takes vitals. We might as well be at home on conference call, given the amount of times he makes eye contact with either of us.
Because Dr. Newbie is in his fellowship (aka still training for his subspecialty) he needs to check in with the attending pulmonologist at the end of our appointments. And many times, what the other pulmonologist says to me doesn't sound the same as what Dr. Newbie says. It's terribly confusing to get conflicting explanations in the same appointment. Especially now that we're dealing with tracking down a less-than-straightforward diagnosis.
I balked at Dr. Newbie's idea of immediately putting a scope down Little A's lungs to have a look around. When the attending physician arrived, I explained that I was concerned because I kept hearing the same phrase from everyone involved: To be on 'the safe side."
Off to email the pulmonologist some pointed questions. More on this soon ...
Because Dr. Newbie is in his fellowship (aka still training for his subspecialty) he needs to check in with the attending pulmonologist at the end of our appointments. And many times, what the other pulmonologist says to me doesn't sound the same as what Dr. Newbie says. It's terribly confusing to get conflicting explanations in the same appointment. Especially now that we're dealing with tracking down a less-than-straightforward diagnosis.
I balked at Dr. Newbie's idea of immediately putting a scope down Little A's lungs to have a look around. When the attending physician arrived, I explained that I was concerned because I kept hearing the same phrase from everyone involved: To be on 'the safe side."
- I had taken Little A to the pediatrician before vacation for an iffy cold that in retrospect, would certainly have cleared up without any intervention. I did it "just in case."
- Her pediatrician sent Little A to be Xrayed this last time despite the fact she didn't hear clear crackles or wheezing in her lungs. "Because of her history, let's be cautious," she said.
- And now the pulmonology dept. is saying this latest Xray is evidence that, just to be on the safe side, we should do more testing.
Off to email the pulmonologist some pointed questions. More on this soon ...
Tuesday, September 16, 2008
Summer Is Officially Over ...
... When Little A gets her first bad cold of the season and ends up at the doctor's office with what might be the beginning of yet another pneumonia. Or maybe not -- hard to tell what's happening in those lungs when Little A is screeching and batting away the pediatrician's stethoscope like it's a hot iron. (Why oh why do doctor appointments always end up right in the middle of naptime?)
On the doctor's recommendation, I took her home for a power nap after the appointment rather than going straight to the hospital radiology department. Hopefully the nap improves the odds that she'll stay calm during the chest Xray this afternoon, and we'll get a nice, nonblurry shot of her lungs. Right now we have no idea if the fast, shallow "belly breathing" I've watched her do in the last 24 hours is just a bad (but nonserious) cold, or something else that requires aggressive intervention.
It feels like eerie deja vu from the first time Little A got seriously ill last December. That time her illness began when we were about to go to Lake Tahoe for New Year's weekend and stay at a house we rented with friends. So in addition to being frantic about Little A's wheezing and coughing, I was worried and conflicted about whether to cancel the trip, and how that might impact Big A. We decided to postpone leaving by a day, then traveled after the pediatrician gave us the ok. But despite all our precautions, Little A ended up in the hospital for a week anyway, after a terrifying experience that cut the trip short.
This time instead of a Tahoe house rental, the illness coincides with an impromptu trip to Southern California that is supposed to begin this weekend. Sitting on my desk is an envelope containing nonrefundable Disneyland tickets that I only purchased a couple days before Little A got sick. We also have nonrefundable hotel reservations for inside the park and nonrefundable hotel reservations in San Diego for a few days after Disneyland -- a real splurge for us. Big A is apoplectic with excitement over this trip, and frankly so am I. We haven't gone on a real vacation that lasted more than a couple nights away from home in years. The idea we might have to cancel this due to a medical emergency so similar to the one that ended the last big getaway we tried for is something I'm trying not to think about. But of course, that just means the possibility of canceling the trip is the second-most frequent thought on my mind today, right behind "what's up with my girl's lungs this time?"
So. Off to radiology now -- wish us luck!
On the doctor's recommendation, I took her home for a power nap after the appointment rather than going straight to the hospital radiology department. Hopefully the nap improves the odds that she'll stay calm during the chest Xray this afternoon, and we'll get a nice, nonblurry shot of her lungs. Right now we have no idea if the fast, shallow "belly breathing" I've watched her do in the last 24 hours is just a bad (but nonserious) cold, or something else that requires aggressive intervention.
It feels like eerie deja vu from the first time Little A got seriously ill last December. That time her illness began when we were about to go to Lake Tahoe for New Year's weekend and stay at a house we rented with friends. So in addition to being frantic about Little A's wheezing and coughing, I was worried and conflicted about whether to cancel the trip, and how that might impact Big A. We decided to postpone leaving by a day, then traveled after the pediatrician gave us the ok. But despite all our precautions, Little A ended up in the hospital for a week anyway, after a terrifying experience that cut the trip short.
This time instead of a Tahoe house rental, the illness coincides with an impromptu trip to Southern California that is supposed to begin this weekend. Sitting on my desk is an envelope containing nonrefundable Disneyland tickets that I only purchased a couple days before Little A got sick. We also have nonrefundable hotel reservations for inside the park and nonrefundable hotel reservations in San Diego for a few days after Disneyland -- a real splurge for us. Big A is apoplectic with excitement over this trip, and frankly so am I. We haven't gone on a real vacation that lasted more than a couple nights away from home in years. The idea we might have to cancel this due to a medical emergency so similar to the one that ended the last big getaway we tried for is something I'm trying not to think about. But of course, that just means the possibility of canceling the trip is the second-most frequent thought on my mind today, right behind "what's up with my girl's lungs this time?"
So. Off to radiology now -- wish us luck!
Monday, February 4, 2008
And Then There Were Two ...
Hip, hip, horray! Little A's stomach flu played nice and didn't wake us up in the middle of the night and concluded without much fanfare today. However, Big A just sat up in bed and started spewing an hour ago. I suspect I may not get off mop free tonight.
I'm feeling a little off in the stomach dept. myself. But I can't tell if that's because cleaning up someone else's vomit (in the bedroom, in the hallway, and in the bathroom) is stomach churning, or because I am hatching the bug myself. But I have a feeling I'll know for sure before too much longer.
Meantime, I'm madly trying to get some work done before I either get too tired to read anything else or start throwing up.
Bets, anyone?
I'm feeling a little off in the stomach dept. myself. But I can't tell if that's because cleaning up someone else's vomit (in the bedroom, in the hallway, and in the bathroom) is stomach churning, or because I am hatching the bug myself. But I have a feeling I'll know for sure before too much longer.
Meantime, I'm madly trying to get some work done before I either get too tired to read anything else or start throwing up.
Bets, anyone?
Tuesday, January 29, 2008
Hey, This Hospital Has Wi-Fi!
That's pretty cool. Now maybe they could work on covering the basics, like a cafeteria that is open for three meals a day rather than just between the hours of 11 a.m.-2 p.m.? Because the eat-one-meal-a-day thing doesn't work out for parents staying at the hospital 24/7 with their kids. The only store within walking distance is Walgreens. I guess I could buy a dinner of little bottles of alcohol* and Cheetos there if I get desperate. Yummy!
Little A is next to me in her crib/cage as I write this, butt high in the air and face down, nose plowed into her fuzzy blankie. She continued her pattern of going on oxygen earlier each day. Today she desaturated and went on it at 3 p.m., whereas yesterday it was 7 p.m., and the after being off since 7 or 8 a.m. If she were not on oxygen now I'd be turning her over on her back for the 312th time and carefully respositioning her so she could breathe better while staring at the monitor, hoping to prevent her from going back on the supplemental Os. But since she's already on them now, I'll just let her snooze the way she wants for now as I write.
I wish I could say we are going home tomorrow, but it's looking like Thursday or Friday are the more likely scenarios. I wish it were earlier, but it is what it is. I really think that sleep deprivation may be the culprit for her desats at this point: She has bags under her eyes from lack of sleep! When she finally does take a nap, her body just can't keep up with her needs like it might have if she hadn't been exhausted on top of being sick. Annoying, but I'm not sure I can do much about it. I'll talk to the nurse about possibly delaying vital checks if she's sleeping, though. (Don't know if they'll do it, but I can always ask ...)
*For nonCalifornians it might sound weird that I could buy booze at a drugstore. But out here grocery and drug stores often have whole aisles filled with alcohol.
Little A is next to me in her crib/cage as I write this, butt high in the air and face down, nose plowed into her fuzzy blankie. She continued her pattern of going on oxygen earlier each day. Today she desaturated and went on it at 3 p.m., whereas yesterday it was 7 p.m., and the after being off since 7 or 8 a.m. If she were not on oxygen now I'd be turning her over on her back for the 312th time and carefully respositioning her so she could breathe better while staring at the monitor, hoping to prevent her from going back on the supplemental Os. But since she's already on them now, I'll just let her snooze the way she wants for now as I write.
I wish I could say we are going home tomorrow, but it's looking like Thursday or Friday are the more likely scenarios. I wish it were earlier, but it is what it is. I really think that sleep deprivation may be the culprit for her desats at this point: She has bags under her eyes from lack of sleep! When she finally does take a nap, her body just can't keep up with her needs like it might have if she hadn't been exhausted on top of being sick. Annoying, but I'm not sure I can do much about it. I'll talk to the nurse about possibly delaying vital checks if she's sleeping, though. (Don't know if they'll do it, but I can always ask ...)
*For nonCalifornians it might sound weird that I could buy booze at a drugstore. But out here grocery and drug stores often have whole aisles filled with alcohol.
Monday, January 28, 2008
Used that Prepacked Overnight Bag ...
Paul Moore: It must be nice to always believe you know better, to always think you're the smartest person in the room.
Jane Craig: No. It's awful.
I've been thinking about this, my favorite quote from the movie Broadcast News, a lot over the past few days. Not that I believe I'm anywhere close to being the smartest person in the rooms I frequent. But I've been right about a key issue a lot recently, and how that is working out feels awful.
Saturday played out like a water-down version of three weeks ago Sunday, when Little A's original cold went from something normal to something scary. It's all less insanely frightening than before, but still no fun. First DH and I had differing opinions on how to proceed with Little A's developing illness. He was concerned but more of the "let's wait and see, it's work out ok by itself" school, while I was of the "my mommy instinct is tingling madly, something is WRONG and we must attend to it NOW" school. We exchanged words about our differences in a not-very-nice way this time, much the way we did before Little A's hospitalization last time. We sort of made up afterwards, but the stress of what was said remains. And then after a few phone calls back and forth with the pediatrician, I ended up bringing Little A to the ER by myself while DH stayed home with Big A.
This time she was in respiratory distress (as opposed to respiratory failure last time) when we arrived at the ER. The staff tried several one-hour albuterol treatments and did a chest Xray before deciding to admit her. They informed us that this time instead of staying at Children's hospital, she was being transferred to another hospital across the city. They said the transfer to the other unit (I'll call it Hilltop Hospital) was because Little A wasn't sick enough to rate a room at Children's Hospital, which is reserved for the most severe illnesses. To which I said, "Yay?" Then Little A and I took our second ambulance ride of the month together.
Hilltop hospital is the shabby, country cousin of Children's Hospital. The nurses we met at Children's were all stellar whereas Hilltop nurses seem to be more of a mixed bag. The facilities are far less posh. Some of the policies seem arbitrary and very family unfriendly, whereas everything at Children's was progressively geared toward making a child's hospital stay as easy on the child and family as possible.
But, the one thing Hilltop has that Children's doesn't is private rooms. Thank God we have one. We have a quiet space all to ourselves this time, rather than a curtained ward room shared by six patients.
And the view? Pretty darn nice. (Though I can think of better ways of seeing it than from a hospital):
That's Oakland in the foreground, with both (stylistically incongruent) sections of the Bay Bridge in view. Those with eagle eyes can also spy the Golden Gate Bridge in the background.
And here's a shot of the view at sunset, with San Francisco's skyline showing off its pretty silhouette:
We now live in limbo. Because while Little A is definitely not as sick as before, she is still nonetheless not in good enough condition to come home. At first we hoped she'd be discharged Sunday morning, but at 5 a.m. Sunday she needed to be put on supplemental oxygen, which killed our chances of discharge that day. They removed the oxygen supplement a few hours later and she went until 2 a.m. Monday without it, but then desaturated and needed oxygen once more. Today they took her off the oxygen at seven a.m., but she was back on it by seven p.m.
To me, the pattern isn't one of getting better or even of holding ground. It worries me. Each day they put her on the oxygen earlier than the day before, and she stays on it longer. At the same time, the doctors and nurses seem to be focusing on the fact that her admitting Xrays this weekend looked better than her discharge Xrays did earlier in the month. They also point out that so far, they are not putting her on ever-higher levels of oxygen, either. 0.50 liters per minute is fine to keep her saturation in the nineties while she sleeps deeply. When awake she can maintain a safe oxygen level without supplementing, which is something it took many days to accomplish during the first hospital stay.
Part of me focuses on those good things too and feels relieved. But another part of me is so frustrated, because any need for oxygen prevents us from bringing Little A home. From a practical standpoint, the amount of oxygen doesn't really matter, the end result -- more hospital time -- is the same regardless.
I feel like I'm failing at everything. Failing Little A by not working harder to prevent her from getting sick again when she was ill so recently, failing at my job because so much of this month has been spent taking care of ill children. Failing Big A by obliterating her much-needed life routines when one of her parents is always at the hospital rather than at home.
I also suspect DH feels I'm failing him. I think he's like Paul More in Broadcast News, believing that like Jane Craig, I revel in making the right calls about going to the hospital with Little A. He just seems to take whatever I say about the girls' health as a braying I-told-you-so on the subject now. But the reality? I just feel scared and bewildered about all of this. There is no comfort in being right when it means your child wins a hospital stay.
And is it wrong for me to so acutely notice that DH has never even acknowledged that I was right to insist on going to the hospital in both these recent situations? How do I keep ending up the bad person in all our disagreements about Little A's health and treatments?
Like I said -- awful.
Saturday, January 26, 2008
One More Thing
Last night Little A got a fever and a strong wheeze back in her lungs again.
So, back we went to her pediatrician's office today during their weekend drop-in clinic. That makes three visits in four days between the two As. So far it's not pneumonia again (yet). But, it's not good. We'll be back in the pediatrician's office first thing Monday if things go as planned.
Because I'm in a really black mood, I have already packed a hospital overnight bag. That way if we have to suddenly go to the ER and have her admitted for treatment before Monday, at least we won't be without some basic needs: a stash of toddler-appropriate snacks, a warm blanket for Little A to snuggle, toiletries for me, etc.
Children don't get serious lung infections multiple times per month unless they have an underlying autoimmune disease. So, in addition to the problem of the moment, I'm trying to wrap my head around the idea that Little A has asthma. This is the most likely culprit, and with the other possible options being things like cystic fibrosis, we'll take asthma. (Well, obviously nobody is letting us choose what she has ... but if we had a choice in this scenario, asthma seems like the best of the crappy things we could pick. )
We'll be giving a lot of nebulizer treatments multiple times per day for the time being and hoping it doesn't turn into pneumonia again. We'll sort out the rest of the ramifications of the asthma when things calm down more.
I know I am whining and probably come across as particularly ungrateful right now. Apologies for that. Chalk it up to the continued sleeplessness and a myriad of worries.
So, back we went to her pediatrician's office today during their weekend drop-in clinic. That makes three visits in four days between the two As. So far it's not pneumonia again (yet). But, it's not good. We'll be back in the pediatrician's office first thing Monday if things go as planned.
Because I'm in a really black mood, I have already packed a hospital overnight bag. That way if we have to suddenly go to the ER and have her admitted for treatment before Monday, at least we won't be without some basic needs: a stash of toddler-appropriate snacks, a warm blanket for Little A to snuggle, toiletries for me, etc.
Children don't get serious lung infections multiple times per month unless they have an underlying autoimmune disease. So, in addition to the problem of the moment, I'm trying to wrap my head around the idea that Little A has asthma. This is the most likely culprit, and with the other possible options being things like cystic fibrosis, we'll take asthma. (Well, obviously nobody is letting us choose what she has ... but if we had a choice in this scenario, asthma seems like the best of the crappy things we could pick. )
We'll be giving a lot of nebulizer treatments multiple times per day for the time being and hoping it doesn't turn into pneumonia again. We'll sort out the rest of the ramifications of the asthma when things calm down more.
I know I am whining and probably come across as particularly ungrateful right now. Apologies for that. Chalk it up to the continued sleeplessness and a myriad of worries.
Thursday, January 24, 2008
Enough Already
January has been post-lite for me. It's all related to residing in the house o' plague. Little A's illness alone ate three weeks of our lives: a week when we thought it was just a bad cold and tried to manage it with doctor's visits, then the week when it was officially double pneumonia and she was hospitalized, and another week after that where she was at home, but I was giving her nebulizer treatments (five times a day), antibiotics (three times a day), and steroids (twice a day). There really wasn't time between medical treatments for anyone to do much of anything else.
So then Little A was ok again. Yay! Except I was sick with something I caught in the hospital by then and my doctor was afraid it was a super bug, so she gave me what she referred to as the "big-gun, super-serious antibiotics." Which did help clear up my ragged lungs, but only after making me nauseous and dizzy for days.
Meanwhile Big A was seriously acting out because Little A's hospital stay had frightened her. She began throwing fits like an overgrown toddler. I tried to be patient and give her lots of extra attention. I tried ignoring all but the most rude or obnoxious behavior. And if her antics were confined to daylight hours I probably could have gutted it through with more grace and kindness than I have. But oh, those nights. Her nocturnal shit fits have been driving DH and I insane. Multiple wake ups per night where no cuddle, kind word, or glass of water mollifies. After waking her sister and parents up she eventually quiets down enough to be put in the parental bed, but then she can only sleep with one hand jammed into my ribs and one foot shoved up DH's bum. Repositioning either appendage results in her waking and howling again.
Big A was finally getting back to normal when we she started complaining about an ear ache. We treated with tylenol for a few days but it wasn't going away on its own. So back to the doctor's office we went.
"Her ears look fine," World's Best Pediatrician said. "But I'm a little worried about this rattle I'm hearing on the left side of her chest." A treatment of albuterol in the office didn't change the rattle. So off across town for an Xray, which confirmed that Big A now has pneumonia in one lung.
The good news is we caught it early and Big A is doing well on antibiotics. It doesn't look like we are hospital-bound again. But if one more freaking thing happens this month, I swear that my head will explode. ENOUGH, already!
So then Little A was ok again. Yay! Except I was sick with something I caught in the hospital by then and my doctor was afraid it was a super bug, so she gave me what she referred to as the "big-gun, super-serious antibiotics." Which did help clear up my ragged lungs, but only after making me nauseous and dizzy for days.
Meanwhile Big A was seriously acting out because Little A's hospital stay had frightened her. She began throwing fits like an overgrown toddler. I tried to be patient and give her lots of extra attention. I tried ignoring all but the most rude or obnoxious behavior. And if her antics were confined to daylight hours I probably could have gutted it through with more grace and kindness than I have. But oh, those nights. Her nocturnal shit fits have been driving DH and I insane. Multiple wake ups per night where no cuddle, kind word, or glass of water mollifies. After waking her sister and parents up she eventually quiets down enough to be put in the parental bed, but then she can only sleep with one hand jammed into my ribs and one foot shoved up DH's bum. Repositioning either appendage results in her waking and howling again.
Big A was finally getting back to normal when we she started complaining about an ear ache. We treated with tylenol for a few days but it wasn't going away on its own. So back to the doctor's office we went.
"Her ears look fine," World's Best Pediatrician said. "But I'm a little worried about this rattle I'm hearing on the left side of her chest." A treatment of albuterol in the office didn't change the rattle. So off across town for an Xray, which confirmed that Big A now has pneumonia in one lung.
The good news is we caught it early and Big A is doing well on antibiotics. It doesn't look like we are hospital-bound again. But if one more freaking thing happens this month, I swear that my head will explode. ENOUGH, already!
Monday, January 7, 2008
Adventures in the Children's Hospital, Part 2
At Children's Hospital, the universal word of need is "Mama." Babies and small children cry it out constantly when uncomfortable. They yell it in anger when they feel cooped up or hungry or tired. They whine it in fear when anyone in scrubs approaches their bedside. At first it is jarring to hear the word howled so often, but after the first day I get used to it and start to screen out all the plaintive "Mama" calls around me.
Little A's room contains six beds and sits directly across from the nurses' station. Due to constant chatter of doctors, nurses, and parents at the desk outside our door, and the monitor alarms and beeps, plus sounds generated from six children and at least one parent per child at all times, our room remains cacophonous at least twenty hours a day. It is so loud that even with earplugs in, I can make out television dialog and distinct conversations in the room around me when I try to sleep. And poor Little A doesn't have earplugs, and is a naturally light sleeper, so the situation is even worse for her. She never sleeps before 11:30 or so each night, even though she is ready to drop by 8 p.m. Rather than getting her usual 14-15 hours of sleep each day, Little A is getting something closer to 8 hours. The combination of drugs, forced insomnia, and illness gets her so amped up that sometimes she bashes her head repeatedly against the metal bars of her crib.
The children crying and monitor noises I don't resent. But I grow more and more annoyed with the parents around us. At least half of them seem to be confused about where they are. This isn't a hotel, I keep muttering under my breath. This isn't about you and your entertainment. The annoying parents blare Nightline or telenovelas past midnight on their children's bedside TVs. Since the oldest child in the room is all of four, it seems to me that the TVs ought to all be turned off by nine or ten p.m. Unfortunately no nurse seems willing to tell the noisy parents this. Even when the TVs go off, some parents have loud, joking conversations with each other or on their telephones at 2 a.m.
The worst noise offenders also seem to be the people with the least-sick children, which only fuels my anger. The child with RSV a few beds down has coughing jags so severe that his mother keeps hitting the call button for nurse assistance as his choking sounds fill the room. Through my curtain I hear the doctors say that his lungs are getting worse. His fever is not going away, either. When that boy's mother speaks on the phone, it is practically in whispers. But the beds around that child and mine are a revolving door of not-nearly-as-sick children. It is the parents whose children only stay a night or two in the hospital who have the energy to shout into the phone about their recent travails, or to complain repeatedly about not having their hair dryer after they take a shower.
To be released home, Little A has to be fever-free and be able to breathe room air without her oxygen saturation falling below 90 percent for twenty-four hours in a row. Her fever breaks the first night, but it takes four days before we can get her off the supplemental oxygen for good. The nurses keep turning it down to try to wean her off, but after an hour or two of doing well, her saturation falls into the eighties, and then we have to turn the oxygen up again and start over. Each time this happens we reset our time table in the hospital by at least another 24 hours, which is frustrating. At the same time, the idea of taking her home before she is ready to go without oxygen scares the hell out of me. I want to be able to sleep at home, not sit in a chair by her bed watching her breathing out of fear. So until she is obviously more healed, it really is best for her to be in the hospital.
Finally by Thursday Little A's oxygen saturation stabilizes. She still needs to get through a night without any problems, but we are optimistic she'll go home the next day. I am ecstatic, but also have my hands full with Big A now. She has returned from her aunt's home in Sonoma after four days and is acting out. DH spends the first night home with her, but has such a difficult time that we decide I should go home for what will hopefully be Little A's last night in the hospital. DH stays with Little A while I try to reassure Big A that she hasn't been abandoned by us, and that her sister really is getting better and will be home soon. I give her a toy from the hospital gift shop, tell her she's a brave girl, and let her sleep in my bed. Normally she'd be in heaven, but she is pretty freaked out.
Big A is always the type of child who needs structure and routine, and the past few weeks have turned her world upside down: first Christmas recess from preschool mucked with things in a nice but chaotic way, and now this. And let's face it -- she's four, but she's not stupid. Big A may not understand the intricacies of calling 911 or being in the hospital, but she is not entirely buying the upbeat explanations she receives from DH and me about what's happening. She is scared and needs reassurance.
The next morning we awake to a howling rainstorm. It is the perfect sort of day to sleep in, but I have to hurry us out of the house early. Big A doesn't want to leave me, and is upset that I'm going back to the hospital and leaving her at preschool. She melts down over getting dressed, over breakfast, over not being able watch her favorite cartoon. I promise that today I will pick her up myself at 4 p.m. just like usual. Then I call DH at the hospital to verify that Little A did fine without oxygen for the night, which means she'll be discharged today. Hurray!
Unfortunately the power goes out at home during the rainstorm, and I worry how we'll be able to give the required breathing treatments every four hours if I can't plug in Little A's nebulizer. But just as I'm freaking out over that, the lights come back. It takes nearly 40 minutes to get to the hospital instead of the usual ten because the highway conditions are so poor in the storm. But it all fades away when I walk into the hospital and see Big A bouncing around in her crib, thrilled to see me. This time, I let the "Mama, mama, mama!" in, and bask in it.
So now we've been home for four days, and so far, so good. The funny thing is that because of her age, the whole experience seems to have been less traumatic for Little A than it was for the family! The rest of us definitely need a vacation from Christmas Vacation at this point.
Little A's room contains six beds and sits directly across from the nurses' station. Due to constant chatter of doctors, nurses, and parents at the desk outside our door, and the monitor alarms and beeps, plus sounds generated from six children and at least one parent per child at all times, our room remains cacophonous at least twenty hours a day. It is so loud that even with earplugs in, I can make out television dialog and distinct conversations in the room around me when I try to sleep. And poor Little A doesn't have earplugs, and is a naturally light sleeper, so the situation is even worse for her. She never sleeps before 11:30 or so each night, even though she is ready to drop by 8 p.m. Rather than getting her usual 14-15 hours of sleep each day, Little A is getting something closer to 8 hours. The combination of drugs, forced insomnia, and illness gets her so amped up that sometimes she bashes her head repeatedly against the metal bars of her crib.
The children crying and monitor noises I don't resent. But I grow more and more annoyed with the parents around us. At least half of them seem to be confused about where they are. This isn't a hotel, I keep muttering under my breath. This isn't about you and your entertainment. The annoying parents blare Nightline or telenovelas past midnight on their children's bedside TVs. Since the oldest child in the room is all of four, it seems to me that the TVs ought to all be turned off by nine or ten p.m. Unfortunately no nurse seems willing to tell the noisy parents this. Even when the TVs go off, some parents have loud, joking conversations with each other or on their telephones at 2 a.m.
The worst noise offenders also seem to be the people with the least-sick children, which only fuels my anger. The child with RSV a few beds down has coughing jags so severe that his mother keeps hitting the call button for nurse assistance as his choking sounds fill the room. Through my curtain I hear the doctors say that his lungs are getting worse. His fever is not going away, either. When that boy's mother speaks on the phone, it is practically in whispers. But the beds around that child and mine are a revolving door of not-nearly-as-sick children. It is the parents whose children only stay a night or two in the hospital who have the energy to shout into the phone about their recent travails, or to complain repeatedly about not having their hair dryer after they take a shower.
To be released home, Little A has to be fever-free and be able to breathe room air without her oxygen saturation falling below 90 percent for twenty-four hours in a row. Her fever breaks the first night, but it takes four days before we can get her off the supplemental oxygen for good. The nurses keep turning it down to try to wean her off, but after an hour or two of doing well, her saturation falls into the eighties, and then we have to turn the oxygen up again and start over. Each time this happens we reset our time table in the hospital by at least another 24 hours, which is frustrating. At the same time, the idea of taking her home before she is ready to go without oxygen scares the hell out of me. I want to be able to sleep at home, not sit in a chair by her bed watching her breathing out of fear. So until she is obviously more healed, it really is best for her to be in the hospital.
Finally by Thursday Little A's oxygen saturation stabilizes. She still needs to get through a night without any problems, but we are optimistic she'll go home the next day. I am ecstatic, but also have my hands full with Big A now. She has returned from her aunt's home in Sonoma after four days and is acting out. DH spends the first night home with her, but has such a difficult time that we decide I should go home for what will hopefully be Little A's last night in the hospital. DH stays with Little A while I try to reassure Big A that she hasn't been abandoned by us, and that her sister really is getting better and will be home soon. I give her a toy from the hospital gift shop, tell her she's a brave girl, and let her sleep in my bed. Normally she'd be in heaven, but she is pretty freaked out.
Big A is always the type of child who needs structure and routine, and the past few weeks have turned her world upside down: first Christmas recess from preschool mucked with things in a nice but chaotic way, and now this. And let's face it -- she's four, but she's not stupid. Big A may not understand the intricacies of calling 911 or being in the hospital, but she is not entirely buying the upbeat explanations she receives from DH and me about what's happening. She is scared and needs reassurance.
The next morning we awake to a howling rainstorm. It is the perfect sort of day to sleep in, but I have to hurry us out of the house early. Big A doesn't want to leave me, and is upset that I'm going back to the hospital and leaving her at preschool. She melts down over getting dressed, over breakfast, over not being able watch her favorite cartoon. I promise that today I will pick her up myself at 4 p.m. just like usual. Then I call DH at the hospital to verify that Little A did fine without oxygen for the night, which means she'll be discharged today. Hurray!
Unfortunately the power goes out at home during the rainstorm, and I worry how we'll be able to give the required breathing treatments every four hours if I can't plug in Little A's nebulizer. But just as I'm freaking out over that, the lights come back. It takes nearly 40 minutes to get to the hospital instead of the usual ten because the highway conditions are so poor in the storm. But it all fades away when I walk into the hospital and see Big A bouncing around in her crib, thrilled to see me. This time, I let the "Mama, mama, mama!" in, and bask in it.
So now we've been home for four days, and so far, so good. The funny thing is that because of her age, the whole experience seems to have been less traumatic for Little A than it was for the family! The rest of us definitely need a vacation from Christmas Vacation at this point.
Sunday, January 6, 2008
Adventures in the Children's Hospital: Part 1
As soon as the ambulance carrying Little A arrived at the Big City Children's Hospital, people scoff at her IV. The tube attached to her scalp threads through a small plastic medicine cup with the bottom punched out. The cup supports and protects the line. A wad of tape attaches the line and cup to Little A's head. It looks like a fez created by McGyver. Little A is one tiny car short of a baby Shriner.
"Did we do that?" people ask multiple times in the emergency department. The tone of voice is always disdainful, whether the person asking is an X-ray tech, orderly, or a nurse. Obviously they do better work here than in the last hospital. I feel sheepish every time someone asks about the IV fez, because it reminds me that this is all my fault.
I'd considered leaving Tahoe in the early morning Sunday when Little A looked so lethargic, but instead DH persuaded me to wait a few more hours to see if she improved before we packed it in. She didn't have a fever, he pointed out. Nor was she wheezing like she had been a few days before when her cold got worse. The albuterol treatments and prednisone we'd started a few days before must be working. So I went sledding with Big A, while DH watched Little A nap. When I came back from sledding I was even more alarmed at what shape Little A was in. She appeared more semi-conscious than napping. She grunted when she breathed. Watching her, my stomach quivered like I was in free fall. I insisted we go home immediately. Not in a nice, rational manner, either -- I yelled at DH in front of our vacation housemates and then threw everything we owned into bags willy nilly before rushing away.
That uncomfortable scene at the rental house was made even uglier by how pointless it was. We hurried, but did so too late. We did not leave in time to prevent Little A from spiking a high fever while traveling through the mountain pass. I watched as her breathing became more shallow and labored. Finally she stopped responding to my voice and hardly moved when I pinched her. That's when we called 911 from the highway in search of the nearest emergency care center (which I'll call Podunk ER). Thankfully it was only a few miles away. She needed oxygen and fluids and a wide variety of drugs immediately. Only then, after many hours in the Podunk ER, was she in any condition to go by ambulance to the Bay Area Children's Hospital where she eventually spent five days for treatment of pnuemonia.
The scalp IV jokes also bother me because truly, that is my fault. I am the person who asked for it. Podunk hospital nurses blew three veins in Little A's extremities and meanwhile her heart rate, breathing, and oxygen saturation were looking poor, and still they just kept poking at invisible veins in the arms and legs without seeming to notice that forty minutes had passed without making any progress on the IV. Little A cried but had no tears. She was so dehydrated. I felt on the verge of having my own stroke as I watched everyone around the gurney. Given her hair-challanged state, Little A's scalp veins stuck out like big, juicy apples on an otherwise barren tree. I said, "Can you put a line in on her head, like they do in a NICU?"
Two of the nurses immediately said they don't usually do that. But another nurse steps forward and said, "This baby has waited long enough already. Let's do it."
Nurse Mike was the one person in the Podunk ER who seemed to be trying to make my baby better, as opposed to just monitoring her as she got sicker. He placed the scalp IV on the first try. He gave Little A fluids and drugs to help her breathing, administered ibuprofen and aceteminophen for the fever (rather than idly mention she could use some Tylenol without bothering to get the meds, like 3 other nurses did). So I felt even worse when the Big-City Children's Hospital staff maligned Nurse Mike's IV. Sure, the rest of the other ER experience had been mock-worthy, but not him.
The irony is that over the next few days I am the one (privately) scoffing at the Children's Hospital staff when it comes to IVs, because although her fez occludes after eight hours and needs replacement, damned if the hot shots at the big children-only facility can get another vein. Even the hospital expert on "tough sticks" can't do it. My child has ten unsuccessful needle sticks in her arms and legs over two days before they give up. Thanks to the scalp IV, Little A was stabilized enough to continue her recovery by receiving fluids and medication by mouth or injection. So to me, Nurse Mike is a real hero. His IV sure was ugly, but it did what it needed to do.
Thankfully, aside from IV drama, the nurses and doctors turn out to be great at Children's Hospital. While unpleasant or painful things transpire (blood tests, Xrays, antibiotic shots, breathing treatments, etc.) everyone is respectful and sympathetic about the wailing and flailing that occurrs on the patient's part. Considering we stay for five days and deal with dozens of nurses and doctors, the fact that I never run up against an obvious asshole is pretty amazing consistency of care.
By contrast, there is no such uniformity in anything related to the parents of the children that surround us in the hospital. On one side of our room is a three year old girl with a difficult-to-control lung infection. The father is soft-spoken, dotes on his child, and spends each night at her bedside. Each morning the mother arrives with perfectly styled long blonde hair, wearing expensive knits and stylish high-heel boots. She appears to be early in the second trimester of a pregnancy. She's gorgeous, but constantly loses her shit. She yells savagely at the anesthesiologist when an MRI gets rescheduled. She snits at the doctor for not having test results available immediately after the test. She complains to the food service people for bringing dinner trays to other patients in the room who are allowed to eat when her child is NPO. When in her presence, her daughter's mood reflect her mother's, so the child screams twice as much as she does when she is around her father. I theoretically sympathize with the woman and all her frustrations, because having your child in the hospital when you are pregnant has got to suck buckets. But she is so unpleasant and huffy that in reality, I mostly just think she's a spoiled bitch.
In the bed across from the daughter of the spoiled bitch is a three year old boy. His mother sits with him a few hours each day but heads out at night for work and taking care of the rest of the children. The boy's mother speaks good English, but her husband and child mostly speak Spanish. The boy has pneumonia. The father stays with him at night and most of the day, too. When they take out the child's IV the father seems oblivious to the fact that the boy must drink a lot of fluids. The boy goes seven hours without drinking a drop, and when the nurses realize this, there is a mad dash to cajole the child into drinking a lot of fluid immediately, lest they be required to reinsert the IV. Nor does the father bat an eyelash when his son lies on his belly on the hospital floor and plays with the garbage can reserved for soiled linens. The father also fails to notice when his son scoots out from under the curtain separating his "room" from Little A's. The boy grabs at a pile of dirty diapers waiting to be taken away by the nurses (for weighing, then disposal). DH attempts to get around the crib and grab the boy just as the child's mother arrives for a visit and screams "DON'T TOUCH THAT!"
I suspect the boy would recover faster if he were completely unsupervised, rather than watched over by his father.
"Did we do that?" people ask multiple times in the emergency department. The tone of voice is always disdainful, whether the person asking is an X-ray tech, orderly, or a nurse. Obviously they do better work here than in the last hospital. I feel sheepish every time someone asks about the IV fez, because it reminds me that this is all my fault.
I'd considered leaving Tahoe in the early morning Sunday when Little A looked so lethargic, but instead DH persuaded me to wait a few more hours to see if she improved before we packed it in. She didn't have a fever, he pointed out. Nor was she wheezing like she had been a few days before when her cold got worse. The albuterol treatments and prednisone we'd started a few days before must be working. So I went sledding with Big A, while DH watched Little A nap. When I came back from sledding I was even more alarmed at what shape Little A was in. She appeared more semi-conscious than napping. She grunted when she breathed. Watching her, my stomach quivered like I was in free fall. I insisted we go home immediately. Not in a nice, rational manner, either -- I yelled at DH in front of our vacation housemates and then threw everything we owned into bags willy nilly before rushing away.
That uncomfortable scene at the rental house was made even uglier by how pointless it was. We hurried, but did so too late. We did not leave in time to prevent Little A from spiking a high fever while traveling through the mountain pass. I watched as her breathing became more shallow and labored. Finally she stopped responding to my voice and hardly moved when I pinched her. That's when we called 911 from the highway in search of the nearest emergency care center (which I'll call Podunk ER). Thankfully it was only a few miles away. She needed oxygen and fluids and a wide variety of drugs immediately. Only then, after many hours in the Podunk ER, was she in any condition to go by ambulance to the Bay Area Children's Hospital where she eventually spent five days for treatment of pnuemonia.
The scalp IV jokes also bother me because truly, that is my fault. I am the person who asked for it. Podunk hospital nurses blew three veins in Little A's extremities and meanwhile her heart rate, breathing, and oxygen saturation were looking poor, and still they just kept poking at invisible veins in the arms and legs without seeming to notice that forty minutes had passed without making any progress on the IV. Little A cried but had no tears. She was so dehydrated. I felt on the verge of having my own stroke as I watched everyone around the gurney. Given her hair-challanged state, Little A's scalp veins stuck out like big, juicy apples on an otherwise barren tree. I said, "Can you put a line in on her head, like they do in a NICU?"
Two of the nurses immediately said they don't usually do that. But another nurse steps forward and said, "This baby has waited long enough already. Let's do it."
Nurse Mike was the one person in the Podunk ER who seemed to be trying to make my baby better, as opposed to just monitoring her as she got sicker. He placed the scalp IV on the first try. He gave Little A fluids and drugs to help her breathing, administered ibuprofen and aceteminophen for the fever (rather than idly mention she could use some Tylenol without bothering to get the meds, like 3 other nurses did). So I felt even worse when the Big-City Children's Hospital staff maligned Nurse Mike's IV. Sure, the rest of the other ER experience had been mock-worthy, but not him.
The irony is that over the next few days I am the one (privately) scoffing at the Children's Hospital staff when it comes to IVs, because although her fez occludes after eight hours and needs replacement, damned if the hot shots at the big children-only facility can get another vein. Even the hospital expert on "tough sticks" can't do it. My child has ten unsuccessful needle sticks in her arms and legs over two days before they give up. Thanks to the scalp IV, Little A was stabilized enough to continue her recovery by receiving fluids and medication by mouth or injection. So to me, Nurse Mike is a real hero. His IV sure was ugly, but it did what it needed to do.
Thankfully, aside from IV drama, the nurses and doctors turn out to be great at Children's Hospital. While unpleasant or painful things transpire (blood tests, Xrays, antibiotic shots, breathing treatments, etc.) everyone is respectful and sympathetic about the wailing and flailing that occurrs on the patient's part. Considering we stay for five days and deal with dozens of nurses and doctors, the fact that I never run up against an obvious asshole is pretty amazing consistency of care.
By contrast, there is no such uniformity in anything related to the parents of the children that surround us in the hospital. On one side of our room is a three year old girl with a difficult-to-control lung infection. The father is soft-spoken, dotes on his child, and spends each night at her bedside. Each morning the mother arrives with perfectly styled long blonde hair, wearing expensive knits and stylish high-heel boots. She appears to be early in the second trimester of a pregnancy. She's gorgeous, but constantly loses her shit. She yells savagely at the anesthesiologist when an MRI gets rescheduled. She snits at the doctor for not having test results available immediately after the test. She complains to the food service people for bringing dinner trays to other patients in the room who are allowed to eat when her child is NPO. When in her presence, her daughter's mood reflect her mother's, so the child screams twice as much as she does when she is around her father. I theoretically sympathize with the woman and all her frustrations, because having your child in the hospital when you are pregnant has got to suck buckets. But she is so unpleasant and huffy that in reality, I mostly just think she's a spoiled bitch.
In the bed across from the daughter of the spoiled bitch is a three year old boy. His mother sits with him a few hours each day but heads out at night for work and taking care of the rest of the children. The boy's mother speaks good English, but her husband and child mostly speak Spanish. The boy has pneumonia. The father stays with him at night and most of the day, too. When they take out the child's IV the father seems oblivious to the fact that the boy must drink a lot of fluids. The boy goes seven hours without drinking a drop, and when the nurses realize this, there is a mad dash to cajole the child into drinking a lot of fluid immediately, lest they be required to reinsert the IV. Nor does the father bat an eyelash when his son lies on his belly on the hospital floor and plays with the garbage can reserved for soiled linens. The father also fails to notice when his son scoots out from under the curtain separating his "room" from Little A's. The boy grabs at a pile of dirty diapers waiting to be taken away by the nurses (for weighing, then disposal). DH attempts to get around the crib and grab the boy just as the child's mother arrives for a visit and screams "DON'T TOUCH THAT!"
I suspect the boy would recover faster if he were completely unsupervised, rather than watched over by his father.
Friday, January 4, 2008
Home Again
Yay! After five days at Children's Hospital Little A can finally breathe on her own again. It felt so good to spring her from the hospital, I can't even express it! (And right now the house is so full of dirty laundry and crap that I don't have time to express it. More soon ...)
Monday, December 31, 2007
Things Have Not Gone as Planned
I am not sure what is worse -- having to call 911 while speeding along on the highway because it looks like your baby is about to stop breathing, or having called 911, discovering all circuits are busy. Then calling back again and getting a busy signal. Then calling back AGAIN and finally getting someone on the line after maybe six minutes of waiting.
Short story: Went to Tahoe Saturday, by Sunday came back home due to Little A's worsening illness. It's a four-hour drive. Halfway home we decided we needed to go to our local children's hospital rather than home. One hour from home we realized Little A was rapidly deteriorating and we couldn't wait to go to the hospital we wanted. So we called 911, and were directed to the nearest ER. Since then she's been transported to the local children's hospital, since it's one of the best pediatric care units around. Little A has a bad case of pneumonia. That means Big A is spending New Year's Eve with her cousins in Sonoma while her father and I spend it with her little sister at the hospital.
Little A is tired and bewildered at all the poking and prodding. Especially the poking: that child has had TEN IV sticks so far because her veins are so teeny that the IVs keep blowing out. And while supplemental oxygen is her best friend right now, she keeps trying to rip off the masks and cannulas. After last night, shows of fiestiness make us feel great. I never thought I'd squeal with delight when my kid lobbed a bottle over my shoulder at frustration with being forced to wear a mask. Life is surprising that way.
At any rate, she is holding her own now, and after last night that's saying something. We are hopeful she'll be home again in just a couple more days.
More soon. I'm off to quickly shower and defoul myself before heading back to the hospital.
Short story: Went to Tahoe Saturday, by Sunday came back home due to Little A's worsening illness. It's a four-hour drive. Halfway home we decided we needed to go to our local children's hospital rather than home. One hour from home we realized Little A was rapidly deteriorating and we couldn't wait to go to the hospital we wanted. So we called 911, and were directed to the nearest ER. Since then she's been transported to the local children's hospital, since it's one of the best pediatric care units around. Little A has a bad case of pneumonia. That means Big A is spending New Year's Eve with her cousins in Sonoma while her father and I spend it with her little sister at the hospital.
Little A is tired and bewildered at all the poking and prodding. Especially the poking: that child has had TEN IV sticks so far because her veins are so teeny that the IVs keep blowing out. And while supplemental oxygen is her best friend right now, she keeps trying to rip off the masks and cannulas. After last night, shows of fiestiness make us feel great. I never thought I'd squeal with delight when my kid lobbed a bottle over my shoulder at frustration with being forced to wear a mask. Life is surprising that way.
At any rate, she is holding her own now, and after last night that's saying something. We are hopeful she'll be home again in just a couple more days.
More soon. I'm off to quickly shower and defoul myself before heading back to the hospital.
Friday, December 28, 2007
Have Yourself a Wheezy Little Christmas
At this moment I should be in a mountain cabin, drinking wine and resting after a day of playing in the snow with the kids. Alas, Little A came down with a cold that got progressively worse all week long. By Wednesday it was bad enough for DH to call the pediatrician's office and get blown off by the on-call physician, who felt we should just give her some Tylenol and wait it out. By Thursday morning Little A refused to play or eat and whimpered every time DH or I put her down. I called the pediatrician's office again and apparently sounded agitated/paranoid enough to score an appointment this time.
Little A was lethargic when I got her in the car to go to the pediatrician's office, but she sounded raspy and terrible by the time we arrived. As I undressed her for the exam, I noticed her arms and feet were the color of raw steak. We couldn't get a pulse ox reading due to equipment issues at first and abandoned that task in favor of giving her an albuterol treatment with the nebulizer right away.
My kids have both had occasional wheezing episodes with certain illnesses that required albuterol. Little children hate having a nebulizer mask over their face, but to me albuterol is an old friend. After just ten minutes a child who sounds like an rattly old air conditioner suddenly sounds clear. Magic nebulizer machine, magic drug!
Except not this time. After a full treatment, Little A still wheezed badly. The nurse set up another albuterol vial. Little A was so sick she wasn't even fighting the mask. The machine hissed, and my heart palpitated. Everyone was very professional in the office, but I caught the look between the nurse and the doctor, and I knew that if she didn't improve from this second treatment, Little A was probably going to the hospital right after this.
Thankfully as the second vial finished, Little A sounded better and had more normal skin color. Her pulse ox reading after two treatments alternated between 92 and 93. Not great (normal range is 96-100) but not in the holy-shit-dangerous range, either. Lord knows how low it was before the two treatments, but I suspect that had we got that first reading, she might be in the hospital right now based solely on that.
As it was, they monitored Little A at the pediatrician's office for another forty minutes and then sent us home with orders to give albuterol every two hours for the rest of the day. Little A is now also on oral prednisone and another inhaled steroid. If she wheezed again on all the new drugs, we were told to take her directly to the hospital. DH and I are exhausted from getting up in the middle of night to administer drugs on the proper schedule. But by this morning at the pediatrician's office, her oxygen saturation level was up to 96, which is a good sign that she is on the mend.
Unfortunately, a 96 percent oxygen saturation level isn't quite high enough for her doctor (or us) to feel comfortable going up to the very thin mountain air of our rental cabin several hundred miles from home. So today we stayed home instead of traveling. Poor Big A doesn't grasp how sick her sister was, and so was incredibly upset that she didn't get to see the snow as previously promised. We're hoping that we might get up to the cabin sometime tomorrow, if Little A improves further overnight. That would still give us a couple days in the snow. But either way, I'm just really thankful that if she had to get so sick, it could happen at the doctor's office, and not in a cabin (or car) in the middle of nowhere.
So if all goes well, I'll be in the snow tomorrow, not to return to the Bay Area until the holiday is over.
Happy New Year, everyone. Here's hoping that good things lie in store for all in 2008.
Little A was lethargic when I got her in the car to go to the pediatrician's office, but she sounded raspy and terrible by the time we arrived. As I undressed her for the exam, I noticed her arms and feet were the color of raw steak. We couldn't get a pulse ox reading due to equipment issues at first and abandoned that task in favor of giving her an albuterol treatment with the nebulizer right away.
My kids have both had occasional wheezing episodes with certain illnesses that required albuterol. Little children hate having a nebulizer mask over their face, but to me albuterol is an old friend. After just ten minutes a child who sounds like an rattly old air conditioner suddenly sounds clear. Magic nebulizer machine, magic drug!
Except not this time. After a full treatment, Little A still wheezed badly. The nurse set up another albuterol vial. Little A was so sick she wasn't even fighting the mask. The machine hissed, and my heart palpitated. Everyone was very professional in the office, but I caught the look between the nurse and the doctor, and I knew that if she didn't improve from this second treatment, Little A was probably going to the hospital right after this.
Thankfully as the second vial finished, Little A sounded better and had more normal skin color. Her pulse ox reading after two treatments alternated between 92 and 93. Not great (normal range is 96-100) but not in the holy-shit-dangerous range, either. Lord knows how low it was before the two treatments, but I suspect that had we got that first reading, she might be in the hospital right now based solely on that.
As it was, they monitored Little A at the pediatrician's office for another forty minutes and then sent us home with orders to give albuterol every two hours for the rest of the day. Little A is now also on oral prednisone and another inhaled steroid. If she wheezed again on all the new drugs, we were told to take her directly to the hospital. DH and I are exhausted from getting up in the middle of night to administer drugs on the proper schedule. But by this morning at the pediatrician's office, her oxygen saturation level was up to 96, which is a good sign that she is on the mend.
Unfortunately, a 96 percent oxygen saturation level isn't quite high enough for her doctor (or us) to feel comfortable going up to the very thin mountain air of our rental cabin several hundred miles from home. So today we stayed home instead of traveling. Poor Big A doesn't grasp how sick her sister was, and so was incredibly upset that she didn't get to see the snow as previously promised. We're hoping that we might get up to the cabin sometime tomorrow, if Little A improves further overnight. That would still give us a couple days in the snow. But either way, I'm just really thankful that if she had to get so sick, it could happen at the doctor's office, and not in a cabin (or car) in the middle of nowhere.
So if all goes well, I'll be in the snow tomorrow, not to return to the Bay Area until the holiday is over.
Happy New Year, everyone. Here's hoping that good things lie in store for all in 2008.
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