The last week has been a blur. Last Tuesday we still didn't have a definite diagnosis but Aaron was improving. We were also waiting on the latest EEG results from the hospital regarding Bill. Steven and I switched shifts at the hospital so that I could get packed up, take Zofia to her 2-yr checkup, pick up my sister at the airport and get to Dover on Wednesday. That night in my own bed was peaceful beyond belief! No beeping, no nurses.
Zofia went to her 2-yr checkup and Teresa was very happy with her development: 36" tall and 30 lbs! Frank came over later that afternoon so that I could get packed up to go to Dover. Just after lunch, Steven called to tell me the test result came back positive for Botulism! I was relieved and sweetly justified.
I picked my sister up at Dulles and we worked our way to Dover during rush hour in the rain - ugh - in order to be with our family as my mother faced a difficult decision.
Steven called Thursday morning to let me know that Aaron was getting discharged and could continue his recuperation at home - yeah!!!!
We are home now - home, sweet home
Tuesday, April 21, 2009
Tuesday, April 14, 2009
Minor changes
I snapped a couple photos of Aaron to document his progress.
This one was taken Sunday
This one was taken Monday
This one was taken Sunday
This one was taken Monday
Monday, April 13, 2009
wax and wane
Every hour brings something new. Wax and wane. Net: 0
They FINALLY got a stool sample from Aaron but they worked all night and into the morning and they basically irrigated his colon to get it (and people pay money for that?). More blood draws to get to the lab. Despite this, Aaron looked pretty good this morning (it's all relative) compared to yesterday and I thought for sure he was on the upswing. He looked so good that Dr Bergman took him off the IV fluids - wax. The physical therapist came in shortly afterwards and agreed with the neurologist's assessment that it was mild - wax. The speech therapist came by at 10:30 and observed a feeding to check his swallowing and airways in order to evaluate the need for a tube - wax. As the afternoon progressed, however, he looked more listless and droopy. He didn't nurse well or take a bottle well - wane. The neurologist came in and did an evaluation. The first question she asked me was whether there was any construction in my neighborhood...
well, yes, actually there is. Now Aaron is still only breastfed and not eating solids yet so we know he didn't get it from food so the only other reasonable explanation is outside. So the construction question made sense. We are getting a new storm water retention pond in the neighborhood and they've been digging for a couple weeks. The neurologist said in that digging they stir up the dirt and the spores. The spores are then released in the air. Makes perfect sense...
Anyway, the neurologist continues and says that even if the test comes back positive for botulism they probably won't give the anti-toxin since it's been over a week now (besides the fact that they have to ship it from CA and it costs $45,000). She says she'll be back tomorrow.
Lunchtime rolls around and Aaron is napping. I head out to get lunch and aspirin. I have a migraine that won't quit. I go to the cafeteria without really wanting to eat anything. Pizza? not again. Burger? ugh. Salad? maaaybe. I settle on chicken parm, broccoli, and a roll. I pay and decide to take the time to eat away from the room and call Tommy to check on Bill's status and confirm what my sister said over the phone about brain activity. He doesn't know much about the results and I call my mom. They finished the test and she hands the phone over to Jim Jackson. Bad news. No response. Wane.
I try feeding Aaron again and he's not interested - wane. Another doctor arrives to perform the nerve conduction test but he tells me that it's very uncomfortable and Aaron should be sedated. ummmm. He confers with the doctors. I call Steven and tell him what the doctor said and to try to get here quicker. The resident comes in after consulting with Dr Bergman and we all agree that it's not necessary to do the test right now and we'll wait until the lab tests come back. I try feeding Aaron a bottle this time - wane. I ask the Resident to restart Aaron's IV as a precaution. I don't want him backsliding. Steven arrives, yeah!, and we catch up. He feeds Aaron and this time Aaron takes the whole bottle - wax. I hit the road worried about rush hour traffic to get home and do dinner, bath, and bedtime with Zofia. Thank God for everyone who is helping us right now. Brigitte made us dinner and Mary Lane offered to hang out in the house until Steven gets home tonight.
I get a call from Tommy. The neurologist told my mom that they will perform another brain test tomorrow and if there is no response they will not do any further testing. He tells me that my mom has asked for his opinion on what she should do and, wisely, my brother reminds her of their living will. Wane.
I drive back to the hospital and Aaron is delighted at the new toys from home I brought - wax. He finally conks out and sleeps - wax.
and I am reminded of the wheel of life.
They FINALLY got a stool sample from Aaron but they worked all night and into the morning and they basically irrigated his colon to get it (and people pay money for that?). More blood draws to get to the lab. Despite this, Aaron looked pretty good this morning (it's all relative) compared to yesterday and I thought for sure he was on the upswing. He looked so good that Dr Bergman took him off the IV fluids - wax. The physical therapist came in shortly afterwards and agreed with the neurologist's assessment that it was mild - wax. The speech therapist came by at 10:30 and observed a feeding to check his swallowing and airways in order to evaluate the need for a tube - wax. As the afternoon progressed, however, he looked more listless and droopy. He didn't nurse well or take a bottle well - wane. The neurologist came in and did an evaluation. The first question she asked me was whether there was any construction in my neighborhood...
well, yes, actually there is. Now Aaron is still only breastfed and not eating solids yet so we know he didn't get it from food so the only other reasonable explanation is outside. So the construction question made sense. We are getting a new storm water retention pond in the neighborhood and they've been digging for a couple weeks. The neurologist said in that digging they stir up the dirt and the spores. The spores are then released in the air. Makes perfect sense...
Anyway, the neurologist continues and says that even if the test comes back positive for botulism they probably won't give the anti-toxin since it's been over a week now (besides the fact that they have to ship it from CA and it costs $45,000). She says she'll be back tomorrow.
Lunchtime rolls around and Aaron is napping. I head out to get lunch and aspirin. I have a migraine that won't quit. I go to the cafeteria without really wanting to eat anything. Pizza? not again. Burger? ugh. Salad? maaaybe. I settle on chicken parm, broccoli, and a roll. I pay and decide to take the time to eat away from the room and call Tommy to check on Bill's status and confirm what my sister said over the phone about brain activity. He doesn't know much about the results and I call my mom. They finished the test and she hands the phone over to Jim Jackson. Bad news. No response. Wane.
I try feeding Aaron again and he's not interested - wane. Another doctor arrives to perform the nerve conduction test but he tells me that it's very uncomfortable and Aaron should be sedated. ummmm. He confers with the doctors. I call Steven and tell him what the doctor said and to try to get here quicker. The resident comes in after consulting with Dr Bergman and we all agree that it's not necessary to do the test right now and we'll wait until the lab tests come back. I try feeding Aaron a bottle this time - wane. I ask the Resident to restart Aaron's IV as a precaution. I don't want him backsliding. Steven arrives, yeah!, and we catch up. He feeds Aaron and this time Aaron takes the whole bottle - wax. I hit the road worried about rush hour traffic to get home and do dinner, bath, and bedtime with Zofia. Thank God for everyone who is helping us right now. Brigitte made us dinner and Mary Lane offered to hang out in the house until Steven gets home tonight.
I get a call from Tommy. The neurologist told my mom that they will perform another brain test tomorrow and if there is no response they will not do any further testing. He tells me that my mom has asked for his opinion on what she should do and, wisely, my brother reminds her of their living will. Wane.
I drive back to the hospital and Aaron is delighted at the new toys from home I brought - wax. He finally conks out and sleeps - wax.
and I am reminded of the wheel of life.
Are you there God? It's me, Anne
Things happen for a reason. So they say and I have little doubt about that. You have to have faith and take that leap. Let go and take that step and in that letting go, answers appear for good or bad. 12 years ago I took that step, walked away from my life to begin again and here I am.
This time the answers aren't as clear. On the way back home from the hospital, I call my brother to find out more about Bill. He fell getting out of the shower and hit his head on the toilet. Knocked unconscious and not breathing. My brother and responding officer performed CPR until paramedics arrived to take over. They continued until they got to the hospital where he was finally resuscitated. He's on a ventilator, not breathing on his own and still unconscious.
So. Why? I am trying not to wallow in the circumstances. It's so easy to ask "Why me?" but I'm keeping my attitude in check and think it cannot be about me. I tell Steven the situation when I return. I tell him I feel awful because my mom needs me and I need her right now but neither of us can help each other. Steven understands and says maybe it's the way it's supposed to be in the fact that I cannot be there. Yes, he's right. It's not about testing me. It's about my brother and my mom - Tommy taking a larger role in the family now. It's about my mom and me - and how we communicate. It's not about being present physically. Does my mere presence help? No. There is nothing that either of us can do to improve either situation. No, a new type of support is called for. I cannot "do" for my mom this time - no home repairs to make life easier, no company sitting on the sofa, no Korean soap operas, no cooking, cleaning or eating. No, I will need to find a new way to support her and my brother.
I need crutches.
This time the answers aren't as clear. On the way back home from the hospital, I call my brother to find out more about Bill. He fell getting out of the shower and hit his head on the toilet. Knocked unconscious and not breathing. My brother and responding officer performed CPR until paramedics arrived to take over. They continued until they got to the hospital where he was finally resuscitated. He's on a ventilator, not breathing on his own and still unconscious.
So. Why? I am trying not to wallow in the circumstances. It's so easy to ask "Why me?" but I'm keeping my attitude in check and think it cannot be about me. I tell Steven the situation when I return. I tell him I feel awful because my mom needs me and I need her right now but neither of us can help each other. Steven understands and says maybe it's the way it's supposed to be in the fact that I cannot be there. Yes, he's right. It's not about testing me. It's about my brother and my mom - Tommy taking a larger role in the family now. It's about my mom and me - and how we communicate. It's not about being present physically. Does my mere presence help? No. There is nothing that either of us can do to improve either situation. No, a new type of support is called for. I cannot "do" for my mom this time - no home repairs to make life easier, no company sitting on the sofa, no Korean soap operas, no cooking, cleaning or eating. No, I will need to find a new way to support her and my brother.
I need crutches.
Sunday, April 12, 2009
beep beep, beep beep
This is the sound of the monitor when Aaron's respiration drops. beep-beep, beep-beep. In my previous post I discussed Aaron's lackluster physicalness. As the week progressed, I noticed a tiny improvement in his latch and was hopeful that whatever was bothering him was on it's way out.
But I was wrong.
Saturday we spent the day hanging around the house and getting chores done. Not a lot to do since the morning was very rainy. I baked some blueberry muffins and delivered some to church since I couldn't stay to help out with spring cleaning or Easter egg stuffing/hiding. During one of Aaron's last feedings of the day, I noticed something strange with his mouth. It was hanging open and the tip of his tongue was sticking out. beep-beep, beep-beep. Odd. So with the list of physical symptoms as they were and not improving (listlessness, weak, no muscle tone, pretty much a floppy baby) and now this new thing, I hit the web.
What could it be? MS? CP? Downs? What else looks like this? Then a hit.
Constipation? check - he hasn't pooped in 8 days
Flat facial expression? check - hardly smiling and droopy lids
Poor feeding (weak sucking)? check - this is one of the reasons we went to the doctor earlier in the week
Weak cry? check - is this what was bothering him?
Decreased movement? check check check
Trouble swallowing with excessive drooling? not so much
Muscle weakness? triple check again!
Breathing problems? hard to say
Infant Botulism
Eureka! Dammit! I consulted with Steven and we both decided it was best to call the on-call pediatrician. After 40 mins or so he called back and I explained what was going on and what my research had brought to light. beep-beep, beep-beep. He told us to go to the Fairfax Emergency room and get it checked out. Quick call to Frank, gobble dinner at 9:30pm, and off we go.
hmm. hmm. Apparently we've puzzled the ER Pediatric doctor. I again explained my assumption and he said it's rare and he's seen it once in the last year. We don't get to go home, we have to admit, get tests (poor guy), and consult with a neurologist in the morning. Hang out until we get a bed assignment beep-beep.
Sunday. Dr Atiyeh, the on-call pediatrician stops by. I again review the symptoms and he says it sounds like infant botulism but we'll do more tests and see the neurologist. beep-beep. Dr McClintock comes in later in the morning. I review the symptoms and he listens. He evaluates Aaron and is pretty certain it's infant botulism - as rare as it is, in his 20 year experience I can only have faith that everyone (including my initial assumption is correct - damn the internet). I want them to rule out everything on the planet before we commit to an initial diagnosis. He reassures me and says we'll do a nerve conduction test tomorrow, run some more blood tests to rule out other neuro-muscular problems, and we'll need to get a stool in order to get it tested for botulism. beep-beep.
What is it about baby poop anyway? Mothers and doctors obsess over baby poop. How often, what color, what consistency, good grief. Aaron got an abdominal x-ray to be sure there was no intestinal blockage causing his constipation. Later that morning the nurse gives him a suppository, obviously no blockage. beep-beep. 2 hours later, nothing. Another suppository. 1 hour later nothing. OK, are you going to just keep giving him suppositories? Steven, Frank and Susan and Kyrksen took Zofia to church and the Easter Egg Hunt in the morning. He really needed to do that with her and she had a blast (she's such a trooper). Pastor Kim stops by to see how we are doing. We talk about what's been going on. beep-beep. OH! YAHOO! POOP! The nurse collects it and it's not enough - you're kidding, right? I doubt the lab actually NEEDS that much. beep-beep.
Time is a blur. What day is it? When did we check-in? What day is it? Steven and I coordinate and he comes over at dinner-time. I give him a quick update and head home to see Zofia, feed her dinner and do the bedtime routine. I'm fried. My eyeballs hurt. I call my mom and get some bad news about Bill (more on that later). I get home and am glad to see Z and it's mutual. She "tells" me about her day. I fix dinner for her and Frank and then go take a shower. I want to stay in the water forever. It's always amazing the power of water. I feel refreshed and catch up on emails, coordinate childcare for the morning because Steven has to go to work, and pack up to go back to the hospital. I call Kathy from church and ask her to hang out so Frank can go home and get some sleep.
Back at the hospital, Steven and I catch up and I send him home. beep-beep. I start writing this post and can't stay awake to finish.... good night. beep-beep
But I was wrong.
Saturday we spent the day hanging around the house and getting chores done. Not a lot to do since the morning was very rainy. I baked some blueberry muffins and delivered some to church since I couldn't stay to help out with spring cleaning or Easter egg stuffing/hiding. During one of Aaron's last feedings of the day, I noticed something strange with his mouth. It was hanging open and the tip of his tongue was sticking out. beep-beep, beep-beep. Odd. So with the list of physical symptoms as they were and not improving (listlessness, weak, no muscle tone, pretty much a floppy baby) and now this new thing, I hit the web.
What could it be? MS? CP? Downs? What else looks like this? Then a hit.
Constipation? check - he hasn't pooped in 8 days
Flat facial expression? check - hardly smiling and droopy lids
Poor feeding (weak sucking)? check - this is one of the reasons we went to the doctor earlier in the week
Weak cry? check - is this what was bothering him?
Decreased movement? check check check
Trouble swallowing with excessive drooling? not so much
Muscle weakness? triple check again!
Breathing problems? hard to say
Infant Botulism
Eureka! Dammit! I consulted with Steven and we both decided it was best to call the on-call pediatrician. After 40 mins or so he called back and I explained what was going on and what my research had brought to light. beep-beep, beep-beep. He told us to go to the Fairfax Emergency room and get it checked out. Quick call to Frank, gobble dinner at 9:30pm, and off we go.
hmm. hmm. Apparently we've puzzled the ER Pediatric doctor. I again explained my assumption and he said it's rare and he's seen it once in the last year. We don't get to go home, we have to admit, get tests (poor guy), and consult with a neurologist in the morning. Hang out until we get a bed assignment
Sunday. Dr Atiyeh, the on-call pediatrician stops by. I again review the symptoms and he says it sounds like infant botulism but we'll do more tests and see the neurologist. beep-beep. Dr McClintock comes in later in the morning. I review the symptoms and he listens. He evaluates Aaron and is pretty certain it's infant botulism - as rare as it is, in his 20 year experience I can only have faith that everyone (including my initial assumption is correct - damn the internet). I want them to rule out everything on the planet before we commit to an initial diagnosis. He reassures me and says we'll do a nerve conduction test tomorrow, run some more blood tests to rule out other neuro-muscular problems, and we'll need to get a stool in order to get it tested for botulism. beep-beep.
What is it about baby poop anyway? Mothers and doctors obsess over baby poop. How often, what color, what consistency, good grief. Aaron got an abdominal x-ray to be sure there was no intestinal blockage causing his constipation. Later that morning the nurse gives him a suppository, obviously no blockage. beep-beep. 2 hours later, nothing. Another suppository. 1 hour later nothing. OK, are you going to just keep giving him suppositories? Steven, Frank and Susan and Kyrksen took Zofia to church and the Easter Egg Hunt in the morning. He really needed to do that with her and she had a blast (she's such a trooper). Pastor Kim stops by to see how we are doing. We talk about what's been going on. beep-beep. OH! YAHOO! POOP! The nurse collects it and it's not enough - you're kidding, right? I doubt the lab actually NEEDS that much. beep-beep.
Time is a blur. What day is it? When did we check-in? What day is it? Steven and I coordinate and he comes over at dinner-time. I give him a quick update and head home to see Zofia, feed her dinner and do the bedtime routine. I'm fried. My eyeballs hurt. I call my mom and get some bad news about Bill (more on that later). I get home and am glad to see Z and it's mutual. She "tells" me about her day. I fix dinner for her and Frank and then go take a shower. I want to stay in the water forever. It's always amazing the power of water. I feel refreshed and catch up on emails, coordinate childcare for the morning because Steven has to go to work, and pack up to go back to the hospital. I call Kathy from church and ask her to hang out so Frank can go home and get some sleep.
Back at the hospital, Steven and I catch up and I send him home. beep-beep. I start writing this post and can't stay awake to finish.... good night. beep-beep
Wednesday, April 8, 2009
mon pauvre bebe
Baby Aaron is sick. Not like anything I've seen in him before or anything I've ever seen with Z. He's been listless for the last couple days (I would describe it as lethargic but the pediatrician promptly corrected me upon seeing Aaron since there are other implications for a "lethargic" baby). He's not nursing, sleeps all the time, and is a droopy guy... the sparkle is gone.
I'm worried sick over this. I went to the pediatrician yesterday and called again today. The pediatrician didn't see anything on physical exam and isn't concerned but I'm a complete mess. I keep going over in my head, on the computer, with Steven, with friends about what could possibly be wrong with my little guy - am I missing something? did you ever see this? what could it be? how long will it last? what if I'm missing something very serious? It's as if his lightbulb is dimmed and I'm sooooo saddened because I don't know what is wrong or what it'll take to bring him back to me - maybe he will nurse, maybe he will take a bottle of expressed milk, maybe he will take formula, maybe he will eat cereal? Will he eat anything?
So I wait. I wait for him to wake up, for him to eat, for the sparkle to reappear. And in all this waiting I'm brittle.
I'm worried sick over this. I went to the pediatrician yesterday and called again today. The pediatrician didn't see anything on physical exam and isn't concerned but I'm a complete mess. I keep going over in my head, on the computer, with Steven, with friends about what could possibly be wrong with my little guy - am I missing something? did you ever see this? what could it be? how long will it last? what if I'm missing something very serious? It's as if his lightbulb is dimmed and I'm sooooo saddened because I don't know what is wrong or what it'll take to bring him back to me - maybe he will nurse, maybe he will take a bottle of expressed milk, maybe he will take formula, maybe he will eat cereal? Will he eat anything?
So I wait. I wait for him to wake up, for him to eat, for the sparkle to reappear. And in all this waiting I'm brittle.
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