Last week, Alex was running high all week long. In truth, she’s been a lot higher over the past month or so, leading me to believe that the honeymoon is about over. Anyway, she was even higher still last week, and woke up a couple of mornings pointing to her neck and telling me it hurts. She’s been sniffling and snorting and coughing, too. So, I’m figuring she’s got a cold coming and it’s affecting her blood sugar.
On Thursday morning, the school calls me that Alex’s sugar at snack time, 9:15, is high, and it is (13.4 or 241 in American numbers; she’s supposed to be between 4 and 8 or 70 and 140 American) but I gave her her insulin at 6:00 am, so she’ll probably start to come down right around then. I tell them not to worry. Twenty minutes after that, another call from the school; Alex doesn’t feel good and wants to be picked up. Okay, off I go to get her.
When we get home at 10:30, I run her number again, and she’s 13.8 (248), a bit higher than earlier, so I know now I’ll have to keep a watch on her. She’s high all day and even the insulin correction isn’t helping bring her numbers within range.
Thursday afternoon I email Alex’s doctor and ask her review Alex’s numbers and tell me what to do. I’m really clueless, because this is Alex’s first sickness since diagnosis. The response comes back that I’m to give her lots of liquids and soluble insulin – easy enough, it’s what I’ve been doing – and to check her for ketones using something called Multistix or any ketone strips if they’re not available. That, as it turns out, is easier said than done.
Now, here’s where I get a little bit peeved. At Alex’s last doctor’s appointment in September, I specifically asked the doctor if we needed ketone strips. I’d been reading on the forums how it’s an indication that the insulin is insufficient. The doctor’s response then was a simple no. I was told that as long as I give her soluble insulin every 6 hours, she should be fine.
So, why now do I have to go scurrying around to buy these things? Urgghh!! At 9:30 our taxi driver, Ekow, comes to get us to drive us to the local hospital, cause I’m thinking that’s probably where I’ll find these.
First stop, the out-patient pharmacy. They’re not sure what I’m talking about but suggest I go to the in-patient pharmacy. Okay, where the hell is that? Public hospitals in Ghana are unlike anything in the U.S., and this one is no exception – large and sprawling and with no signage whatsoever. Fortunately, an information desk is out front and a very nice lady offers to take us where we need to go. Good thing, because I forgot my bag of bread crumbs. Five minutes later, she directs us inside the Men’s Surgical Ward. I would never have even considered looking in there!
The clerks at the in-patient pharmacy also don’t know what I’m talking about. So, they call a doctor over. A white lady in a smock comes in and they point us out to her. From her accent, I’m guessing she’s from Russia or the Ukraine, or one of those countries that end in “stan.” She wants to know what I want, and when I explain, wants to know why I want them. Really, what difference does it make why I want them, I just want them! But I go ahead and explain that Alex here has Type 1 Diabetes and she’s been having high numbers, etc., etc. She looks at Alex and says to me, “How can it be? Someone so young with diabetes?” I’m thinking, is she clueless or what? But, I give her the benefit of the doubt; maybe she doesn’t know that Type 1 is the new name for Juvenile diabetes. (Scary thought, either way, for a doctor to make that comment, in my opinion.)
She walks us to the lab where she thinks we might be able to find them. The lab doesn’t have any, but they offer to run a urine test for Alex right then and there. You don’t have any, but you can do a urine test? Makes no sense to me. In any event, I don’t think so. The place is filthy and there are about 100 people in the waiting room. Not only that, but I’d have to check Alex’s urine every 4 hours and I’m not coming back here to do it.
Off to our waiting chariot and we have our driver take us to a big pharmacy in town. By big, I mean it’s bigger than breadbox, but not much bigger. CVS has nothing to worry about.
We get there and wait our turn at the pharmacist window, but we’re told that they don’t have ketone strips. At least he knew what they are. I’m encouraged. "Have them now, or ever?" I ask. The pharmacist’s response is, "Well, we only have a couple." "Oh, so you do have some." "No, we don't have any more." I'm ready to slap the guy. "Do you have any suggestions where I can find these things?" I ask. He sends us to another neighborhood. Only good thing about going here is I found that they carry some of her insulin, so I pick up a bottle of Humulin R, which costs about $8 more than my regular pharmacy who was out. Oh, that and a box of Tic Tacs for Alex – that girl can’t resist.
We try five more pharmacies. No luck.
Thinking well, now I'll take her to the local (well-run, clean) laboratory and at least have them check her for ketones. Good news! They can do it. Bad news! They send the urine to the lab in Accra and the results won't be available until Monday. Fat lot of good that would do us.
So, home we go. Ketone strip-less. I’ll just have to do my best with what I have. I give Alex insulin corrections that are doing very little to bring her numbers down; she doesn’t have a “normal” number until Saturday around dinner time.
In the meantime, I’ll continue to be on the lookout for ketone strips for a future emergency; I’m sure I’ll find them when I don’t need them. And I don’t care what anyone says, ignorance is not bliss. It’s scary.
Friday, November 28, 2008
Tuesday, November 25, 2008
June 25th: A celebratory union.
June 25th is a date of tremendous significance in my life, as two distinctly different unions happened on that date. One helped make me, the other is going to try to break me.
Nearly a half century ago, on June 25, my parents, Robert and Martha, were joined in holy matrimony. On that day, they joined hands and looked eagerly to a future full of hope and promise. Of course, I wasn't there to witness their union, but I heard it was nice. Until my father died in 1997, my parents shared a lot of joy, laughter and love.
On June 25, 2008, there was another union of a sorts, but this time, I had a front row seat. On that day, my 7 year old daughter, Alexandra, was diagnosed with Type 1 diabetes -- an unholy, undesirable union if ever there was one. On that day, though, I made a solemn (silent) vow that my daughter would have a future at least as full of hope and promise, if it was within my power.
We're now into month 5 of life with D, as we call it. It's been a challenge, as any parent of a child with diabetes will tell you. But it's been a dual challenge because we make our home in a "third world country."
Without recreating the wheel, I'm following this post up with a reprint of posts from my other website, Obroni Observations, to learn what our first couple of days were like in a local hospital.
Oh, and my title, about June 25th being a union to celebrate. It is still a reason to celebrate. My daughter is still alive, and with my help, and by God's grace, she will be for a very long time. An unholy union? Maybe. Undesirable? Absolutely, yes. But, we're in it now for better or for worse... well, you know how that goes.
Nearly a half century ago, on June 25, my parents, Robert and Martha, were joined in holy matrimony. On that day, they joined hands and looked eagerly to a future full of hope and promise. Of course, I wasn't there to witness their union, but I heard it was nice. Until my father died in 1997, my parents shared a lot of joy, laughter and love.
On June 25, 2008, there was another union of a sorts, but this time, I had a front row seat. On that day, my 7 year old daughter, Alexandra, was diagnosed with Type 1 diabetes -- an unholy, undesirable union if ever there was one. On that day, though, I made a solemn (silent) vow that my daughter would have a future at least as full of hope and promise, if it was within my power.
We're now into month 5 of life with D, as we call it. It's been a challenge, as any parent of a child with diabetes will tell you. But it's been a dual challenge because we make our home in a "third world country."
Without recreating the wheel, I'm following this post up with a reprint of posts from my other website, Obroni Observations, to learn what our first couple of days were like in a local hospital.
Oh, and my title, about June 25th being a union to celebrate. It is still a reason to celebrate. My daughter is still alive, and with my help, and by God's grace, she will be for a very long time. An unholy union? Maybe. Undesirable? Absolutely, yes. But, we're in it now for better or for worse... well, you know how that goes.
5 Nights in Korle Bu Children’s Ward
Diagnosis: Type 1 Diabetes
It’s been a long while, I know, I know. Things have been busy and work has been steady and I could hardly find the time to do anything writing unless it was for money. Until now. I am now on a self-prescribed work slowdown. I have no choice.
About three weeks ago, we took Alexandra to the doctor for a check-up. She’d been listless, losing weight, waking up several times overnight to go to the bathroom, then sipping water before she even slipped back into bed. Now, at first I attributed the night time excursions to the toilet to the fact that she had wet the bed one night (sorry Alex, she begged me not to tattle, but it’s part of the story), and she knew I wasn’t happy about that. I figured she was trying to prevent a repeat performance by getting up 4 and 5 times. But the frequency to the bathroom, her thirst, her utter exhaustion, and finally, seeing the knobbiness at the top of her spine… I knew something was really wrong. I just knew.
I am not a doctor, by any stretch of the imagination, but I am “aware” of the symptoms of diabetes, and was worried sick because Alex exhibited all of them. I didn’t tell my husband what I suspected, this is his little princess, and he needed to hear the grim news from a professional, not his wife.
Unfortunately, after the GP ran a quick urinalysis and blood sugar test, he confirmed my worst fears. He sent us off to the lab for a battery of more blood tests. We were told to report to Korle Bu Children’s Unit to see the pediatrician in charge.
Dr. Renner is a very busy woman who took the time out of her hectic schedule to see us. She looked Alexandra over, read the referral note from the GP and the urine and blood test results, and then had an aide take Alex up to the ward for a weight check (19 kilos or 41.8 lbs – she weighed the same a year earlier!). While they went to do that, she told me to grab my bag and come with her, and she’d show us where we’d be staying. GULP! I don’t know what I expected to hear, but an overnight stay wasn’t it.
We went up to the ward, and I was introduced to the matron, Auntie Mary. The doctor told her that Alexandra and I should be given a bed in the “amenity” ward, which is separate from the regular “charity” ward. We were lucky enough to get our pick of the beds, since there were 2 doubles, a single and a crib, all separated by heavy blue damask curtains with the words “Donated by Angel Trust” embroidered in the middle of them. We opted for the double bed by the window so we could look out of our cell, um room, window.
We were also lucky enough to have our own locked toilet, at the other end of the ward, though. Unfortunately, that area of the building didn’t have running water, so you had to fill a bucket from the shower, and then dump it to flush. The first day, Alexandra and I must have visited that toilet at least two dozen times. I am sure that the other patients and their mommys were very surprised to see an obroni on the floor (one who wasn’t a visiting doctor), but someone just like them – a mommy taking care of her very sick child.
And that is exactly what I was, a mommy helping to take care of her very sick child. Alexandra was put on a saline drip to try to flush out the sugar that had built up in her body – her ketones were very high, and this was the only way to that. The doctor didn’t come right out and say it (that’s their way, unfortunately, and I’m forced to dig and press for answers), but I’ve since discovered that Alex had ketoacidosis, hence the drip in her hand for 36 hours. She was not happy about having this “thing” stuck in her hand, but we didn’t have any option. On the other hand, she thought it was “fun” that she could now take a leak in a bedpan. I, however, did not find that “fun” since her aim is awful, and it was my responsibility to mop up her mess, fortunately there was a sink and a mop in the room for that very purpose. The “amenity” part, I guess.
So, once Alex and I were settled into our room, and she hooked up to the drip, it was total boredom from there, at least for us. I did have my laptop with me, and the Wizard of Oz is on my hard drive, so Alex watched that to pass the time.
In the interim, poor Sly was running around like a chicken without a head. Hospitals (at least, this one in particular), do not have the luxury of a dispensary, and any drugs needed for treatment must be purchased, in advance, by the patient’s representative. So, off Sly went to the 24-hour pharmacy for the first of many many trips – insulin, saline drip, a glucose meter and strips were the first run.
As soon as he brought them, Sly had to rush home to get the things we needed for our sleepover – he still had to pick up the kids from school, so it was urgent to get home, pack, get back to the hospital and get back to Tema by 4:00 pm to get the boys (who were going to be very upset to hear that we were in the hospital). Pillows, pajamas, undies, clothes, slippers, laptop adapters, phone chargers, tooth brush/paste, soap, shampoo, towels… you name it, we needed it. This is not a luxury hotel.
While he was gone, the nurse came in and gave Alex the first of what will likely be more than 50,000 insulin shots over the course of her life time. I hope that Alex gets to live a good long life, and hope that in her lifetime there will be a cure for this horrible disease. It took all of my willpower not to break down and cry in front of Alexandra, but my heart was breaking.
Sly finally got back about 3:00 pm with two Hefty sized bags worth of stuff. He needed our driver to help him carry the stuff up, and poor Ekow, our driver, was really upset to see Alex lying in bed attached to an IV. This is not the Alex he knows, who fights to sit in the front passenger seat, and bangs on his car intentionally every day as she departs, and calls him Brother Ekow. No, this was not that Alex.
Unfortunately, Sly had to leave almost as soon as he arrived to get back and pick up the boys, and we were left alone for our first night in the hospital.
Stay tuned!
--------------------------------------
Originally posted July 14, 2008 at Obroni Observations
About three weeks ago, we took Alexandra to the doctor for a check-up. She’d been listless, losing weight, waking up several times overnight to go to the bathroom, then sipping water before she even slipped back into bed. Now, at first I attributed the night time excursions to the toilet to the fact that she had wet the bed one night (sorry Alex, she begged me not to tattle, but it’s part of the story), and she knew I wasn’t happy about that. I figured she was trying to prevent a repeat performance by getting up 4 and 5 times. But the frequency to the bathroom, her thirst, her utter exhaustion, and finally, seeing the knobbiness at the top of her spine… I knew something was really wrong. I just knew.
I am not a doctor, by any stretch of the imagination, but I am “aware” of the symptoms of diabetes, and was worried sick because Alex exhibited all of them. I didn’t tell my husband what I suspected, this is his little princess, and he needed to hear the grim news from a professional, not his wife.
Unfortunately, after the GP ran a quick urinalysis and blood sugar test, he confirmed my worst fears. He sent us off to the lab for a battery of more blood tests. We were told to report to Korle Bu Children’s Unit to see the pediatrician in charge.
Dr. Renner is a very busy woman who took the time out of her hectic schedule to see us. She looked Alexandra over, read the referral note from the GP and the urine and blood test results, and then had an aide take Alex up to the ward for a weight check (19 kilos or 41.8 lbs – she weighed the same a year earlier!). While they went to do that, she told me to grab my bag and come with her, and she’d show us where we’d be staying. GULP! I don’t know what I expected to hear, but an overnight stay wasn’t it.
We went up to the ward, and I was introduced to the matron, Auntie Mary. The doctor told her that Alexandra and I should be given a bed in the “amenity” ward, which is separate from the regular “charity” ward. We were lucky enough to get our pick of the beds, since there were 2 doubles, a single and a crib, all separated by heavy blue damask curtains with the words “Donated by Angel Trust” embroidered in the middle of them. We opted for the double bed by the window so we could look out of our cell, um room, window.
We were also lucky enough to have our own locked toilet, at the other end of the ward, though. Unfortunately, that area of the building didn’t have running water, so you had to fill a bucket from the shower, and then dump it to flush. The first day, Alexandra and I must have visited that toilet at least two dozen times. I am sure that the other patients and their mommys were very surprised to see an obroni on the floor (one who wasn’t a visiting doctor), but someone just like them – a mommy taking care of her very sick child.
And that is exactly what I was, a mommy helping to take care of her very sick child. Alexandra was put on a saline drip to try to flush out the sugar that had built up in her body – her ketones were very high, and this was the only way to that. The doctor didn’t come right out and say it (that’s their way, unfortunately, and I’m forced to dig and press for answers), but I’ve since discovered that Alex had ketoacidosis, hence the drip in her hand for 36 hours. She was not happy about having this “thing” stuck in her hand, but we didn’t have any option. On the other hand, she thought it was “fun” that she could now take a leak in a bedpan. I, however, did not find that “fun” since her aim is awful, and it was my responsibility to mop up her mess, fortunately there was a sink and a mop in the room for that very purpose. The “amenity” part, I guess.
So, once Alex and I were settled into our room, and she hooked up to the drip, it was total boredom from there, at least for us. I did have my laptop with me, and the Wizard of Oz is on my hard drive, so Alex watched that to pass the time.
In the interim, poor Sly was running around like a chicken without a head. Hospitals (at least, this one in particular), do not have the luxury of a dispensary, and any drugs needed for treatment must be purchased, in advance, by the patient’s representative. So, off Sly went to the 24-hour pharmacy for the first of many many trips – insulin, saline drip, a glucose meter and strips were the first run.
As soon as he brought them, Sly had to rush home to get the things we needed for our sleepover – he still had to pick up the kids from school, so it was urgent to get home, pack, get back to the hospital and get back to Tema by 4:00 pm to get the boys (who were going to be very upset to hear that we were in the hospital). Pillows, pajamas, undies, clothes, slippers, laptop adapters, phone chargers, tooth brush/paste, soap, shampoo, towels… you name it, we needed it. This is not a luxury hotel.
While he was gone, the nurse came in and gave Alex the first of what will likely be more than 50,000 insulin shots over the course of her life time. I hope that Alex gets to live a good long life, and hope that in her lifetime there will be a cure for this horrible disease. It took all of my willpower not to break down and cry in front of Alexandra, but my heart was breaking.
Sly finally got back about 3:00 pm with two Hefty sized bags worth of stuff. He needed our driver to help him carry the stuff up, and poor Ekow, our driver, was really upset to see Alex lying in bed attached to an IV. This is not the Alex he knows, who fights to sit in the front passenger seat, and bangs on his car intentionally every day as she departs, and calls him Brother Ekow. No, this was not that Alex.
Unfortunately, Sly had to leave almost as soon as he arrived to get back and pick up the boys, and we were left alone for our first night in the hospital.
Stay tuned!
--------------------------------------
Originally posted July 14, 2008 at Obroni Observations
Night 1 – Korle Bu Children’s Ward
At about 7:30 p.m. we got a phone call from Sly, and the boys were standing by to talk to us. Sean had a limited understanding of what Alex was going through, but was worried and solicitous on the phone to Alex (not normal, trust me). Then Mike got on, “wuz up?” I believe was his comment (very normal, trust me). He told me on the phone that he wanted to bring Alex something when he saw her. I told him that she couldn’t have anything with sugar in it, no soda, no juice, no cookies, no candy, no cake. He listens to that, pauses and then says, “Okay, so what you’re saying is I can give her water.” Smart ass. But, yeah, I guess it did sound like that. Know what he brought her? He made her a necklace out of some buttons and, get this, a plastic chocolate chip cookie that came with one of Alex’s cooking sets. Why not rub salt into the wound.
Believe it or not, with the exception of giving birth, I had only once been away from my boys overnight. It felt weird not to give them their good night hugs, which they both come in for every night, even waking me up if I’ve dozed off.
As exhausted, both physically and mentally as I am, the night just dragged and dragged and dragged. I couldn’t sleep. Of course, it doesn’t help that the nurses were in every 2 hours to check Alexandra’s blood sugar level, and then give her an insulin shot every 4 hours. They are extremely vigilant, as much as any nurse in any U.S. hospital. Just not as chatty.
Alexandra’s blood sugar numbers were so high that they don’t even record; our glucose meter, a OneTouch Ultra 2, only registers to 33.3 mmol/L (which is equivalent to 599 in the States), and so it could have been significantly higher than that. We’ll never know, it just says HI. In any event, whether it’s 33.3 or HI, it’s too high.
The doctor has said that Alex’s reading should be between 4 and 8. Jeez, and I kept wondering, is that even achievable? We’re working towards it. As I go through the meter readings, I see that the numbers didn’t even budge until she’d been on insulin and the IV drip for a full 12 hours, and then they dropped too far and she had to be given glucose to bring it back up. Up and down and down and up. At one point, she was 2.9 (52 in the U.S.) and within 2 hours she was at 31.1 (560). It was crazy.
What was also crazy is that we didn’t get any information on what Alex should or shouldn’t be eating. I was scrutinizing packages in the little store on the hospital grounds to see what was sugar-free, totally neglecting the fact (that I’ve since tattooed on my brain) that carbohydrates convert to sugar, too. So the sugar-free oatmeal cookies had enough carbs in it to make the sugar-free point totally moot.
So, anyway, our first night… up every 2 hours or so, shots every 4. Alex took it like the champ that she is. Naturally, I couldn’t sleep. I’d scarcely drift off and the nurse was back. If it wasn’t the nurse, then it was some loudmouth in the hall outside who didn’t realize (care?) that there was a sick kid in the room. Some time after the midnight check (12:34 a.m. 22.7 mmol/L), I gave up and pulled out the laptop. I had, fortunately, remembered to ask for my mini-modem, which has pre-paid units loaded onto it. MTN made a small fortune off me that night, the frigging rip-offs… it cost me about $7 for a lousy 20 minutes online. I needed to email my mom and tell her the news anyway, and ask her to pass the info on to my brothers and sisters. My mom puts CNN to shame, that news was out there so fast, and by the next morning, I had notes and e-cards galore for Alex to read.
Alex was funny when she opened the e-cards. She’d read the message, listen to the music, watch the video. And then she’d say, “Is that all?” She is so used to getting real paper cards (with money in them!!) from Grandma, that she couldn’t really be bothered with the cyber version. Boring. Oh well, I enjoyed them.
By 6:00 am we were both up, since Alex needed her insulin shot and had to eat a half hour after that. Her breakfast was tea with milk and a fake sugar tablet, cornflakes and milk, and a banana. Then we watched the Wizard of Oz. Again.
Today, the plan was to learn to do the glucose blood readings. Doesn’t that sound like fun?
Later!
-----------------------------------
Originally published July 15, 2008 at Obroni Observations
Believe it or not, with the exception of giving birth, I had only once been away from my boys overnight. It felt weird not to give them their good night hugs, which they both come in for every night, even waking me up if I’ve dozed off.
As exhausted, both physically and mentally as I am, the night just dragged and dragged and dragged. I couldn’t sleep. Of course, it doesn’t help that the nurses were in every 2 hours to check Alexandra’s blood sugar level, and then give her an insulin shot every 4 hours. They are extremely vigilant, as much as any nurse in any U.S. hospital. Just not as chatty.
Alexandra’s blood sugar numbers were so high that they don’t even record; our glucose meter, a OneTouch Ultra 2, only registers to 33.3 mmol/L (which is equivalent to 599 in the States), and so it could have been significantly higher than that. We’ll never know, it just says HI. In any event, whether it’s 33.3 or HI, it’s too high.
The doctor has said that Alex’s reading should be between 4 and 8. Jeez, and I kept wondering, is that even achievable? We’re working towards it. As I go through the meter readings, I see that the numbers didn’t even budge until she’d been on insulin and the IV drip for a full 12 hours, and then they dropped too far and she had to be given glucose to bring it back up. Up and down and down and up. At one point, she was 2.9 (52 in the U.S.) and within 2 hours she was at 31.1 (560). It was crazy.
What was also crazy is that we didn’t get any information on what Alex should or shouldn’t be eating. I was scrutinizing packages in the little store on the hospital grounds to see what was sugar-free, totally neglecting the fact (that I’ve since tattooed on my brain) that carbohydrates convert to sugar, too. So the sugar-free oatmeal cookies had enough carbs in it to make the sugar-free point totally moot.
So, anyway, our first night… up every 2 hours or so, shots every 4. Alex took it like the champ that she is. Naturally, I couldn’t sleep. I’d scarcely drift off and the nurse was back. If it wasn’t the nurse, then it was some loudmouth in the hall outside who didn’t realize (care?) that there was a sick kid in the room. Some time after the midnight check (12:34 a.m. 22.7 mmol/L), I gave up and pulled out the laptop. I had, fortunately, remembered to ask for my mini-modem, which has pre-paid units loaded onto it. MTN made a small fortune off me that night, the frigging rip-offs… it cost me about $7 for a lousy 20 minutes online. I needed to email my mom and tell her the news anyway, and ask her to pass the info on to my brothers and sisters. My mom puts CNN to shame, that news was out there so fast, and by the next morning, I had notes and e-cards galore for Alex to read.
Alex was funny when she opened the e-cards. She’d read the message, listen to the music, watch the video. And then she’d say, “Is that all?” She is so used to getting real paper cards (with money in them!!) from Grandma, that she couldn’t really be bothered with the cyber version. Boring. Oh well, I enjoyed them.
By 6:00 am we were both up, since Alex needed her insulin shot and had to eat a half hour after that. Her breakfast was tea with milk and a fake sugar tablet, cornflakes and milk, and a banana. Then we watched the Wizard of Oz. Again.
Today, the plan was to learn to do the glucose blood readings. Doesn’t that sound like fun?
Later!
-----------------------------------
Originally published July 15, 2008 at Obroni Observations
Korle Bu: Day 2/Night 2
This morning, I beg the nurses to take the IV drip out of Alex’s hand for a little while, so that she can have a shower. Now, I’ve already been down the hall (at about 4:30 am since I couldn’t sleep) and had my morning shower. The water is cold, in case you hadn’t guessed, there’s no hot water heater here. But it’s a refreshing cold, you know, so it didn’t bother me. Yeah, and tofu tastes like chicken. But I can’t subject that to Alex, so I heat up water in a kettle and pour it into our shower bucket, so she can at least have a bucket shower in warm water. I realize that it will be a bit tricky for her to have a shower but not get water on the bandage, so we wrap her hand up in a plastic bag and I wash her down. She’s mostly clean. Good enough.
______________________________
The blood sugar meter we’re using is a OneTouch Ultra 2, and I assume it must be fairly new on the market, because the nurses have never seen this one before. No one knows how to work it. So, they ask me. They’re asking me? How the hell do I know how it works? I take the instruction booklet, and try to figure it out myself. Settings, time, readings… okay, I think I’ve got it. For the first 24 hours, the nurses come in and get the meter from me, then do the test on Alex. I’m forewarned, though; today I’m going to start learning how to do this myself. Guess I’ve got no choice, unless I take a nurse home to live with us.
The nurses come in the early afternoon to teach me how to take Alex’s blood sugar readings and how to give her an injection. This ought to be good. A group of about 4 of them stand over me to watch, it must be a pretty funny sight, or else it’s a slow day on the ward. Alex is biting her lip. I know she’s nervous, and I’m nervous, but this has got to be done.
Okay, wipe off the finger tip, put the strip into the meter… no the other way, check the code. Wait, where’s my glasses? I can’t see without my glasses (it sucks getting old). Check the code, what code? Oh, okay, that code. Got it, match. Now prick her finger. Damn, I wish I didn’t have to do this. Jab. Blood. Good, that’s what I was hoping to get. Enough for the reading? Counting down: 5-4-3-2-1. Success!! She’s HI. So what else is new?
Now the insulin shot. I’m an old pro at shots, or so I think. I used to be an IVF patient, and sometimes had to do this kind of stuff to myself. I’ve got to first draw air into the syringe up to the 4 unit mark (God, the markings on this thing are so tiny!), then inject the air into the vial while it’s upside down. Then, I’ve got to draw the 4 units into the syringe. Remove the syringe, wipe down Alex’s arm and inject. No problem. I can do that. Like riding a bicycle. It all comes back to you, right? Except, I do it wrong.
Back in the old IVF days (15+ years ago, mind you), you kind of made a dart throwing motion to get the needle past the thick skin of your butt. I did this to Alex’s skinny little upper arm. She yelped and the nurse oh, oh, ohed, and I knew I screwed up. Gently, gently. Pinch the skin and insert the needle a bit shallowly. Shit. I hurt my daughter. She’s rubbing her arm and shooting daggers out of her eyes. Is this going to get easier?
The nurses depart (with a story to laugh about for at least a week or so), and Alex is apparently already over the needle fiasco, asking me what’s for lunch. God, isn’t it great how kids bounce back? Well, not sure what lunch is going to be, since Sly hasn’t gotten here yet. The fridge is stocked with fruit, milk, yogurt and cheese, and we’ve got corn flakes and cream crackers on standby. After the prerequisite 30 minute after injection wait, I make Alex up a plate of everything. She eats ravenously, and it’s really nice to see, since she had no appetite over the past few weeks.
Sly finally arrives back at noon, but he can’t stay that long. We have to send him on another errand for more insulin, and he has to go to two labs for the test vials for more of Alex’s blood work. Normally, the patient would go to the lab, make the payment and then they’d take the sample and run the test. With Alex hooked up to the IV, Sly had to do the preliminaries, then we had to get a doctor on the ward to draw the blood, then Sly had to deliver the samples back to their respective labs. Poor Sly. But I am so thankful he’s here, otherwise I’d have to do it. By the time he comes back from running all around the hospital grounds, its 2:30 pm. His cell phone rings. Problem. Its our taxi driver who calls to say that because it’s Friday the boys got out of school early. Crap. We totally forgot. We tell Ekow to take the boys to a local café and let them have something to drink and Sly will be home as soon as he can. Oh, well. They’ll live.
Before he leaves, Sly goes off to get us some food, fried fish, kenkey and white rice. That’s dinner for both of us, plus her fruit, milk, cheese, etc. She’s turning into a little pig, but it’s good.
Alex’s blood sugar levels keep saying HI, and the nurses think that maybe the meter is broken, but when she’s tested on another meter, they both read the same. I guess we’ll just have to wait for the drip to flush her out more.
Another long night is ahead of us, but at least this time we know what to expect. Or so I think. About 2:00 am, Alex wakes up and says she has to use the toilet. Not the bedpan, but the toilet, she’s got to go. Now, she’d been constipated for a couple of days, and nothing seemed to loosen her up at all. I’m thinking maybe all this drip is softening the system up, you know. So, off we trot down the hall to the bathroom, and we stop at the nurses’ desk to get unhooked from the drip.
She goes in and sits and sits and sits. Nothing. I’m waiting outside, poking my head in every few minutes. Nothing. Ten or fifteen minutes of nothing. I suggest she forget about it and try later. No such luck. She absolutely refuses. She says, “It’s right there and it’s got to come out and I’m not leaving until it does.” She’s almost in tears. Thirty minutes later, and she’s still sitting there. Finally, I hear noises, and its not just grunting and heavy breathing. Persistence pays off. I retrieve the water to flush, and she gets reattached to her drip, then we’re back in the room washing our hands and sanitizing and she goes back to sleep with a peaceful look on her face. Cue the James Brown, “I Feel Good” music.
Good night.
---------------------------------------------
Originally published July 16, 2008 at Obroni Observations
______________________________
The blood sugar meter we’re using is a OneTouch Ultra 2, and I assume it must be fairly new on the market, because the nurses have never seen this one before. No one knows how to work it. So, they ask me. They’re asking me? How the hell do I know how it works? I take the instruction booklet, and try to figure it out myself. Settings, time, readings… okay, I think I’ve got it. For the first 24 hours, the nurses come in and get the meter from me, then do the test on Alex. I’m forewarned, though; today I’m going to start learning how to do this myself. Guess I’ve got no choice, unless I take a nurse home to live with us.
The nurses come in the early afternoon to teach me how to take Alex’s blood sugar readings and how to give her an injection. This ought to be good. A group of about 4 of them stand over me to watch, it must be a pretty funny sight, or else it’s a slow day on the ward. Alex is biting her lip. I know she’s nervous, and I’m nervous, but this has got to be done.
Okay, wipe off the finger tip, put the strip into the meter… no the other way, check the code. Wait, where’s my glasses? I can’t see without my glasses (it sucks getting old). Check the code, what code? Oh, okay, that code. Got it, match. Now prick her finger. Damn, I wish I didn’t have to do this. Jab. Blood. Good, that’s what I was hoping to get. Enough for the reading? Counting down: 5-4-3-2-1. Success!! She’s HI. So what else is new?
Now the insulin shot. I’m an old pro at shots, or so I think. I used to be an IVF patient, and sometimes had to do this kind of stuff to myself. I’ve got to first draw air into the syringe up to the 4 unit mark (God, the markings on this thing are so tiny!), then inject the air into the vial while it’s upside down. Then, I’ve got to draw the 4 units into the syringe. Remove the syringe, wipe down Alex’s arm and inject. No problem. I can do that. Like riding a bicycle. It all comes back to you, right? Except, I do it wrong.
Back in the old IVF days (15+ years ago, mind you), you kind of made a dart throwing motion to get the needle past the thick skin of your butt. I did this to Alex’s skinny little upper arm. She yelped and the nurse oh, oh, ohed, and I knew I screwed up. Gently, gently. Pinch the skin and insert the needle a bit shallowly. Shit. I hurt my daughter. She’s rubbing her arm and shooting daggers out of her eyes. Is this going to get easier?
The nurses depart (with a story to laugh about for at least a week or so), and Alex is apparently already over the needle fiasco, asking me what’s for lunch. God, isn’t it great how kids bounce back? Well, not sure what lunch is going to be, since Sly hasn’t gotten here yet. The fridge is stocked with fruit, milk, yogurt and cheese, and we’ve got corn flakes and cream crackers on standby. After the prerequisite 30 minute after injection wait, I make Alex up a plate of everything. She eats ravenously, and it’s really nice to see, since she had no appetite over the past few weeks.
Sly finally arrives back at noon, but he can’t stay that long. We have to send him on another errand for more insulin, and he has to go to two labs for the test vials for more of Alex’s blood work. Normally, the patient would go to the lab, make the payment and then they’d take the sample and run the test. With Alex hooked up to the IV, Sly had to do the preliminaries, then we had to get a doctor on the ward to draw the blood, then Sly had to deliver the samples back to their respective labs. Poor Sly. But I am so thankful he’s here, otherwise I’d have to do it. By the time he comes back from running all around the hospital grounds, its 2:30 pm. His cell phone rings. Problem. Its our taxi driver who calls to say that because it’s Friday the boys got out of school early. Crap. We totally forgot. We tell Ekow to take the boys to a local café and let them have something to drink and Sly will be home as soon as he can. Oh, well. They’ll live.
Before he leaves, Sly goes off to get us some food, fried fish, kenkey and white rice. That’s dinner for both of us, plus her fruit, milk, cheese, etc. She’s turning into a little pig, but it’s good.
Alex’s blood sugar levels keep saying HI, and the nurses think that maybe the meter is broken, but when she’s tested on another meter, they both read the same. I guess we’ll just have to wait for the drip to flush her out more.
Another long night is ahead of us, but at least this time we know what to expect. Or so I think. About 2:00 am, Alex wakes up and says she has to use the toilet. Not the bedpan, but the toilet, she’s got to go. Now, she’d been constipated for a couple of days, and nothing seemed to loosen her up at all. I’m thinking maybe all this drip is softening the system up, you know. So, off we trot down the hall to the bathroom, and we stop at the nurses’ desk to get unhooked from the drip.
She goes in and sits and sits and sits. Nothing. I’m waiting outside, poking my head in every few minutes. Nothing. Ten or fifteen minutes of nothing. I suggest she forget about it and try later. No such luck. She absolutely refuses. She says, “It’s right there and it’s got to come out and I’m not leaving until it does.” She’s almost in tears. Thirty minutes later, and she’s still sitting there. Finally, I hear noises, and its not just grunting and heavy breathing. Persistence pays off. I retrieve the water to flush, and she gets reattached to her drip, then we’re back in the room washing our hands and sanitizing and she goes back to sleep with a peaceful look on her face. Cue the James Brown, “I Feel Good” music.
Good night.
---------------------------------------------
Originally published July 16, 2008 at Obroni Observations
Night #3: Rainy night in Accra or "Yikes, the hospital roof is leaking!"
Saturday night saw a great big thunderstorm, and let me tell you, we can use all the rain we can get. We're still experiencing a slight problem with the water levels in our hydro dam, so a little bit rain means fewer "lights off" scenarios.
Except, that the roof leaks. About midnight, right after I'd done Alex's sugar test, I could hear rain outside the window, which is normal, but could also hear it outside the door to the room, which is not normal. Because her level was too high, I had to go tell the nurse who'd have to come and give her a fast acting insulin. I open the door into the hallway, and step into a puddle of water about two inches deep, and about 10 feet in diameter. I'm so glad I had flip-flops, and not my fuzzy bunny slippers on.
This, apparently, is par for the course, as the maintenance man tells me the next morning. "We complain and complain, but no one cares... there's no money to fix it." I can't imagine this ever happening in the states. What a mess. All of the next day, there were half a dozen buckets spread along the corridor to catch the water that must have pooled on the roof.
Alexandra is excited today, because her brothers are coming to see her for the first time. They come in quietly, toting bags of milk and apples for Alex (and Diet Coke and Snickers bars for me), and lunch from a fast food restaurant at the Accra Mall... Barcelo's chicken sandwich is to die for, it is sooo juicy! Alex gets a grilled chicken drumstick and fries (chip, we call it here), and wonders where her candy, juice box and toy are? This is gonna be a hard habit to break.
Mike brings some of his toys for him and Alex to play with, and Sean brings his apron. Yes, you read that right. One of Sean's classes is sewing, and he has brought me his apron to help hem. Final exams are the following week. He's asking for help from the wrong person, let me tell you. I failed home ec in high school. Mrs. Tierney just hated me. It takes me about 90 minutes to finish the hemming (I have got to get needles with bigger eyes... it took me 5 minutes just to thread each one!). Finally, finished, it looks fairly neat and the stitches are about as crappy as Sean's, so the teacher will never know an adult helped. Ha!
While I'm playing Susie Homemaker, Sean is messing around on my laptop; he some how gets wifi (how come I couldn't?) and is quick to jump on Runescape (do all kids obsess about this game?). Then, within minutes, there's a fight for the login rights to the game.
Poor Sly had to leave, and is running the diabetes-related errands again. Today he's on a hunt for the insulin pen and cartridges. Parking is horrible in this city, so he grabs a taxi and heads for Accra Central. No luck at the doctor recommended chemist shop. No luck at three other pharmacies he tried either. But Sly got a winner of a taxi driver who tells him he knows one that might have it, so off they go to Labone. Sure enough, the place has got the pen and the cartridges. As it turns out, this shop is 2 minutes from Sly's mother's house... if Sly hadn't been trying to avoid going past the family house, he might have been there earlier, but that's neither here nor there.
By the time he gets back to the hospital, it's starting to get late, and they all need to head back home. Sly cannot drive at night, and night falls very very quickly in the tropics. Alex gets a little depressed watching them leave her behind; I know she wishes she could go home, too, but the numbers are still way too high.
When they get home, Sly calls to tell me they arrived safe and sound, and were just getting ready to eat dinner. Then he tells me that Sean ironed a hole into his apron, right on the part I just finished stitching. He was so upset, he went and hid in the bathroom for 20 minutes (at 13, he's too big to cry in front of his dad, you know how it is). Another home economics failure... must be in the genes.
Pretty soon, Alex and I are back into our regular nighttime routine of watching the Wizard of Oz, and eating sugar-free oatmeal cookies and drinking a glass of milk before bed, and then it's off to la-la land. For one of us, at least.
Once Alex falls asleep, I decide to go down to the shower and get myself ready for bed. I hear water running (unless it's my imagination, now, since I've been hearing drip drip drip all day long), and push open the door to the "amenity ward" shower, and there's a soapy naked man in there! Oops! I can only see the back of him, but I can tell it's the maintenance man. I open the door and he's apologizing. "Don't worry," I tell him, "it's more your shower than mine. Sorry." The poor guy, I probably embarrassed the hell out of him. Didn't bother me, though. Hey, if you've seen one naked black butt, you've seem 'em all.
--------------------------------------
Originally published July 18, 2008 at Obroni Observations
Except, that the roof leaks. About midnight, right after I'd done Alex's sugar test, I could hear rain outside the window, which is normal, but could also hear it outside the door to the room, which is not normal. Because her level was too high, I had to go tell the nurse who'd have to come and give her a fast acting insulin. I open the door into the hallway, and step into a puddle of water about two inches deep, and about 10 feet in diameter. I'm so glad I had flip-flops, and not my fuzzy bunny slippers on.
This, apparently, is par for the course, as the maintenance man tells me the next morning. "We complain and complain, but no one cares... there's no money to fix it." I can't imagine this ever happening in the states. What a mess. All of the next day, there were half a dozen buckets spread along the corridor to catch the water that must have pooled on the roof.
Alexandra is excited today, because her brothers are coming to see her for the first time. They come in quietly, toting bags of milk and apples for Alex (and Diet Coke and Snickers bars for me), and lunch from a fast food restaurant at the Accra Mall... Barcelo's chicken sandwich is to die for, it is sooo juicy! Alex gets a grilled chicken drumstick and fries (chip, we call it here), and wonders where her candy, juice box and toy are? This is gonna be a hard habit to break.
Mike brings some of his toys for him and Alex to play with, and Sean brings his apron. Yes, you read that right. One of Sean's classes is sewing, and he has brought me his apron to help hem. Final exams are the following week. He's asking for help from the wrong person, let me tell you. I failed home ec in high school. Mrs. Tierney just hated me. It takes me about 90 minutes to finish the hemming (I have got to get needles with bigger eyes... it took me 5 minutes just to thread each one!). Finally, finished, it looks fairly neat and the stitches are about as crappy as Sean's, so the teacher will never know an adult helped. Ha!
While I'm playing Susie Homemaker, Sean is messing around on my laptop; he some how gets wifi (how come I couldn't?) and is quick to jump on Runescape (do all kids obsess about this game?). Then, within minutes, there's a fight for the login rights to the game.
Poor Sly had to leave, and is running the diabetes-related errands again. Today he's on a hunt for the insulin pen and cartridges. Parking is horrible in this city, so he grabs a taxi and heads for Accra Central. No luck at the doctor recommended chemist shop. No luck at three other pharmacies he tried either. But Sly got a winner of a taxi driver who tells him he knows one that might have it, so off they go to Labone. Sure enough, the place has got the pen and the cartridges. As it turns out, this shop is 2 minutes from Sly's mother's house... if Sly hadn't been trying to avoid going past the family house, he might have been there earlier, but that's neither here nor there.
By the time he gets back to the hospital, it's starting to get late, and they all need to head back home. Sly cannot drive at night, and night falls very very quickly in the tropics. Alex gets a little depressed watching them leave her behind; I know she wishes she could go home, too, but the numbers are still way too high.
When they get home, Sly calls to tell me they arrived safe and sound, and were just getting ready to eat dinner. Then he tells me that Sean ironed a hole into his apron, right on the part I just finished stitching. He was so upset, he went and hid in the bathroom for 20 minutes (at 13, he's too big to cry in front of his dad, you know how it is). Another home economics failure... must be in the genes.
Pretty soon, Alex and I are back into our regular nighttime routine of watching the Wizard of Oz, and eating sugar-free oatmeal cookies and drinking a glass of milk before bed, and then it's off to la-la land. For one of us, at least.
Once Alex falls asleep, I decide to go down to the shower and get myself ready for bed. I hear water running (unless it's my imagination, now, since I've been hearing drip drip drip all day long), and push open the door to the "amenity ward" shower, and there's a soapy naked man in there! Oops! I can only see the back of him, but I can tell it's the maintenance man. I open the door and he's apologizing. "Don't worry," I tell him, "it's more your shower than mine. Sorry." The poor guy, I probably embarrassed the hell out of him. Didn't bother me, though. Hey, if you've seen one naked black butt, you've seem 'em all.
--------------------------------------
Originally published July 18, 2008 at Obroni Observations
Korle Bu -- Nights 4 and 5 and Finally, Home
Let me forewarn you. This is a long post, so if you've got to use the bathroom or need to refresh your drink, go do it now.
Nights 4 and 5 at Korle Bu were really more of the same, except we we no longer had the room to ourselves. A little boy named Issah was put into the bed next to us -- not sure what was wrong with him, though he did need to be given blood at one point. He cried and cried each time they had to hook him up to the bag. The mother was told that he would be in the hospital for 5 to 6 weeks. WEEKS!!! After the doctors left, I heard her moaning to herself, that she was going to die. You've got to understand, at Korle Bu, the parent is also the nurse, and aide and everything else a child needs. No doubt, she was worried about how she was going to exist in the hospital with her son for that long, basically abandoning every other family member in the process. I learned from her later that this was her youngest child (he was about 5), so the others were home being cared for by someone other than she. I'm sure she was also worried about how much something like that was going to cost.
As I said previously, the "amenity ward" had no amenities... just beds separated by curtains (donated by Angel Trust which was embroidered on them in big gold letters!), a small fridge and a sink in the corner. No television, no toys, nothing at all.
Alex and I were lucky because we had the laptop, so when Issah wasn't sleeping or being tended to, we drew the curtains open, turned the laptop around so they could see, and we all watched the Wizard of Oz (yes, again!) and Sponge Bob cartoons. It kept the kids quiet at least.
By the time we were ready to be discharged on Monday, we waited for the bill to be presented. And waited, and waited and waited. By 1:00 pm, no bill, and Sly was getting annoyed, and the kids were hungry. So, we told the nurse we'd be back on Friday for Alex's check-up, and take care of the bill then. Fortunately, they let us go, but for parents who appear not to have the financial means they wouldn't release them. Trust me on that; those parents would have to stay until the bill was settled. Oh, before I forget, the bill was for (equivalent) $78 for 5 nights, and some medical supplies (I.V. hook ups) and we were given credit for the saline we didn't use and gave to the doctor.
Now, even though we'd been in the hospital for 5 days, we still hadn't seen a nutritionist about Alex's food, nor had we been taught how to use the insulin pen. So we left, and figured we'd figure our way through it. And, of course, we have.
Friday we returned for Alex's check-up, and the doctor was pleased with her blood sugar numbers which showed a nice decline. Then she sent us off to the nutritionist. That was a complete joke. With all due respect to the nutritionists, they haven't a single clue as to what a Type 1 diabetic child needs. The tip off to me should have been the fact that Alex was the only child in the clinic, for the whole 2 hours that we were there.
When we went into the nutrition clinic, there was a room full of adults of all ages and sizes waiting to see the nutritionist. Sly fortunately bullied his way in and got someone to take Alex's weight and fill out her card. Then we waited and waited and waited (again). Over an hour passed before we were set to see the nutritionist. Poor Alex was starving by this point, and I kept passing her crackers and juice to eat, but she really wanted lunch and she was due.
We gave the lady a note from the doctor, which basically said that Alex is now in your care, please bear in mind that she is a child and she needs to eat to grow. Very nice. But, who cares what the doctor says. Not the nutritionist.
She told us Alex could have a piece of bread with butter for breakfast, and some tea or milo with a teaspoon of sugar. She could have a ball of kenkey or banku, she should eat a bowl of fufu. She should not take dairy, except for a few tablespoons of condensed milk and then limit intake to only 2 or 3 times a week. She should eat porridge. She should eat green vegetables like kontomire and spinach. She shouldn't eat more than a tin of meat (the tin being the size of an anchovy can). She shouldn't eat eggs more than twice a week.
Well, we listened politely to all she had to say. Thanked her for her time, and them promptly dismissed all that. How in the hell could Alex grow, much less THRIVE, on so little food?!
Here's my take on this lady. She may know her stuff, but only as it relates to overweight adults or children with type 2 diabetes, who need to diet anyway.
So, we basically ignored her instructions. I went online, found a wonderful support group at www.childrenwithdiabetes.com, and learned that Alex can eat anything she wants, as long as her insulin is covered. Meaning, I have to give her enough food and carbohydrates to support the amount of insulin she gets, so that her blood sugar doesn't fall too low.
On the day of the meeting with the nutritionist, Alex weighed 19 kg (that's about 42 lbs and below the 10th percentile for weight). As of today (almost 3 months since the diagnosis), Alex weighs 23 kg (slightly more than 50 lbs). When we went to see Alex's doctor last month, her doctor was so happy to see that her weight increased. She is now probably at the weight she should be, for her age... I just checked, and she's just below the 50th percentile. YIPPEE!!!
Her HBA1C was 14.7 a week after diagnosis. The HBA1C blood test is an indicator of how well a person's insulin needs are being met over the previous 3 months. A non-diabetic person would be around 5. There is a scale, and for a diabetic, between 6 and 7 is ideal, above 7 means you may have to tweak your insulin management, above 8 means you need a bit more tweaking, above 9% to 11% you've been doing a poor job of managing your insulin. Anything above 12% means you're doing a really crappy job and you better get help fast. Alex was 14.7%. Her next HBA1C is next week, so we'll see how she's doing.
I've been looking at Alex's blood sugar levels and averaging them, and she's down to 5.9 (106 on the U.S. scale); she was higher than 33.3 on diagnosis or up in the U.S. 600s range. We have up days and down days, and days that we can't figure out why she's high or low. But we're managing them, day to day, meal to meal.
She started school on Tuesday (grade 3!), and was entirely on her own. She had learned to check her own sugar level over the summer, so that we didn't have to leave her meter with the librarian, as we originally thought. She has shown some amazing independence, really. She's been on the low side each time she checks her sugar, first day was 2.8 (50 U.S.) and 3.2 (58 U.S.) yesterday, but she knows to eat her glucose tabs when she's low and drink some juice. We have to figure out a better breakfast solution to keep her higher until lunch time, cause her snack is not carrying her over well. Today, I tried 1/2 cup of Lucozade with breakfast, so we'll see how that works.
Today, we're off to Korle Bu again. This time, not for a check-up, but for a meeting with other parents of children with Type 1 diabetes. The doctor has realized that, in me, at least, she has found a very vocal, proactive parent, and I think she's impressed with Alex's progress. So, this meeting is a way to give the other parents some guidance or encouragement, from a parent's perspective. I'm looking forward to it. I hope I can help.
Oh, and after the medical injustice posting earlier, you will not believe the positive response to that! So many people have offered to help Ghanaian children with Type 1 diabetes. The parents forum at the childrenwithdiabetes website really rallied behind me, and we've got about 30 brand new glucose meters and some strips heading over here soon, courtesy of Leanne's wonderful husband... you all remember Leanne, right? Leanne is an American Mom in Africa, who had the best stories of life in Ghana. I'm still waiting for her to start blogging about life in Texas, cause I really miss her creative craziness.
Another poster to that blog post works for a company in the U.S. which produces Lantus insulin, and she has been communicating with me and with Alex's doctor and trying to coordinate something between the doctors at Children's Hospital in D.C. and Dr. Renner at Korle Bu. Keep your fingers crossed that soon, these children here in Ghana will have the same support as children with diabetes in the rest of the world.
---------------------------------------------
Originally published September 18, 2008 at Obroni Observations
Nights 4 and 5 at Korle Bu were really more of the same, except we we no longer had the room to ourselves. A little boy named Issah was put into the bed next to us -- not sure what was wrong with him, though he did need to be given blood at one point. He cried and cried each time they had to hook him up to the bag. The mother was told that he would be in the hospital for 5 to 6 weeks. WEEKS!!! After the doctors left, I heard her moaning to herself, that she was going to die. You've got to understand, at Korle Bu, the parent is also the nurse, and aide and everything else a child needs. No doubt, she was worried about how she was going to exist in the hospital with her son for that long, basically abandoning every other family member in the process. I learned from her later that this was her youngest child (he was about 5), so the others were home being cared for by someone other than she. I'm sure she was also worried about how much something like that was going to cost.
As I said previously, the "amenity ward" had no amenities... just beds separated by curtains (donated by Angel Trust which was embroidered on them in big gold letters!), a small fridge and a sink in the corner. No television, no toys, nothing at all.
Alex and I were lucky because we had the laptop, so when Issah wasn't sleeping or being tended to, we drew the curtains open, turned the laptop around so they could see, and we all watched the Wizard of Oz (yes, again!) and Sponge Bob cartoons. It kept the kids quiet at least.
By the time we were ready to be discharged on Monday, we waited for the bill to be presented. And waited, and waited and waited. By 1:00 pm, no bill, and Sly was getting annoyed, and the kids were hungry. So, we told the nurse we'd be back on Friday for Alex's check-up, and take care of the bill then. Fortunately, they let us go, but for parents who appear not to have the financial means they wouldn't release them. Trust me on that; those parents would have to stay until the bill was settled. Oh, before I forget, the bill was for (equivalent) $78 for 5 nights, and some medical supplies (I.V. hook ups) and we were given credit for the saline we didn't use and gave to the doctor.
Now, even though we'd been in the hospital for 5 days, we still hadn't seen a nutritionist about Alex's food, nor had we been taught how to use the insulin pen. So we left, and figured we'd figure our way through it. And, of course, we have.
Friday we returned for Alex's check-up, and the doctor was pleased with her blood sugar numbers which showed a nice decline. Then she sent us off to the nutritionist. That was a complete joke. With all due respect to the nutritionists, they haven't a single clue as to what a Type 1 diabetic child needs. The tip off to me should have been the fact that Alex was the only child in the clinic, for the whole 2 hours that we were there.
When we went into the nutrition clinic, there was a room full of adults of all ages and sizes waiting to see the nutritionist. Sly fortunately bullied his way in and got someone to take Alex's weight and fill out her card. Then we waited and waited and waited (again). Over an hour passed before we were set to see the nutritionist. Poor Alex was starving by this point, and I kept passing her crackers and juice to eat, but she really wanted lunch and she was due.
We gave the lady a note from the doctor, which basically said that Alex is now in your care, please bear in mind that she is a child and she needs to eat to grow. Very nice. But, who cares what the doctor says. Not the nutritionist.
She told us Alex could have a piece of bread with butter for breakfast, and some tea or milo with a teaspoon of sugar. She could have a ball of kenkey or banku, she should eat a bowl of fufu. She should not take dairy, except for a few tablespoons of condensed milk and then limit intake to only 2 or 3 times a week. She should eat porridge. She should eat green vegetables like kontomire and spinach. She shouldn't eat more than a tin of meat (the tin being the size of an anchovy can). She shouldn't eat eggs more than twice a week.
Well, we listened politely to all she had to say. Thanked her for her time, and them promptly dismissed all that. How in the hell could Alex grow, much less THRIVE, on so little food?!
Here's my take on this lady. She may know her stuff, but only as it relates to overweight adults or children with type 2 diabetes, who need to diet anyway.
So, we basically ignored her instructions. I went online, found a wonderful support group at www.childrenwithdiabetes.com, and learned that Alex can eat anything she wants, as long as her insulin is covered. Meaning, I have to give her enough food and carbohydrates to support the amount of insulin she gets, so that her blood sugar doesn't fall too low.
On the day of the meeting with the nutritionist, Alex weighed 19 kg (that's about 42 lbs and below the 10th percentile for weight). As of today (almost 3 months since the diagnosis), Alex weighs 23 kg (slightly more than 50 lbs). When we went to see Alex's doctor last month, her doctor was so happy to see that her weight increased. She is now probably at the weight she should be, for her age... I just checked, and she's just below the 50th percentile. YIPPEE!!!
Her HBA1C was 14.7 a week after diagnosis. The HBA1C blood test is an indicator of how well a person's insulin needs are being met over the previous 3 months. A non-diabetic person would be around 5. There is a scale, and for a diabetic, between 6 and 7 is ideal, above 7 means you may have to tweak your insulin management, above 8 means you need a bit more tweaking, above 9% to 11% you've been doing a poor job of managing your insulin. Anything above 12% means you're doing a really crappy job and you better get help fast. Alex was 14.7%. Her next HBA1C is next week, so we'll see how she's doing.
I've been looking at Alex's blood sugar levels and averaging them, and she's down to 5.9 (106 on the U.S. scale); she was higher than 33.3 on diagnosis or up in the U.S. 600s range. We have up days and down days, and days that we can't figure out why she's high or low. But we're managing them, day to day, meal to meal.
She started school on Tuesday (grade 3!), and was entirely on her own. She had learned to check her own sugar level over the summer, so that we didn't have to leave her meter with the librarian, as we originally thought. She has shown some amazing independence, really. She's been on the low side each time she checks her sugar, first day was 2.8 (50 U.S.) and 3.2 (58 U.S.) yesterday, but she knows to eat her glucose tabs when she's low and drink some juice. We have to figure out a better breakfast solution to keep her higher until lunch time, cause her snack is not carrying her over well. Today, I tried 1/2 cup of Lucozade with breakfast, so we'll see how that works.
Today, we're off to Korle Bu again. This time, not for a check-up, but for a meeting with other parents of children with Type 1 diabetes. The doctor has realized that, in me, at least, she has found a very vocal, proactive parent, and I think she's impressed with Alex's progress. So, this meeting is a way to give the other parents some guidance or encouragement, from a parent's perspective. I'm looking forward to it. I hope I can help.
Oh, and after the medical injustice posting earlier, you will not believe the positive response to that! So many people have offered to help Ghanaian children with Type 1 diabetes. The parents forum at the childrenwithdiabetes website really rallied behind me, and we've got about 30 brand new glucose meters and some strips heading over here soon, courtesy of Leanne's wonderful husband... you all remember Leanne, right? Leanne is an American Mom in Africa, who had the best stories of life in Ghana. I'm still waiting for her to start blogging about life in Texas, cause I really miss her creative craziness.
Another poster to that blog post works for a company in the U.S. which produces Lantus insulin, and she has been communicating with me and with Alex's doctor and trying to coordinate something between the doctors at Children's Hospital in D.C. and Dr. Renner at Korle Bu. Keep your fingers crossed that soon, these children here in Ghana will have the same support as children with diabetes in the rest of the world.
---------------------------------------------
Originally published September 18, 2008 at Obroni Observations
Medical Injustice: Don't get Type 1 Diabetes in Ghana (unless you're rich!)
Before I get into Night 4 of our hospital stay, I need to take a minute here to vent about injustice; specifically, the injustice perpetrated by medical product manufacturers and pharmaceutical companies to third world countries, such as Ghana.
Alexandra, as a Type 1 diabetic, has two very basic but very specific lifelong needs. She needs to check her blood glucose levels several times every day, and she needs to have insulin administered via multiple daily injections.
Alexandra is lucky. Not because she has Type 1 diabetes, but because she has parents who have the means and access to the things that she needs, in order to keep her alive. Not to draw too fine a point on this, without regular glucose monitoring and daily insulin injections, Alexandra will die.
I and my husband and our family will do all that we can to prevent that. We will ensure that she has her glucose levels tested as often as necessary, sometimes 6 or 7 times a day. And she will have the insulin injections that she needs to bring high sugar levels down, at least twice a day, but sometimes more. And she will be provided with appropriate and nourishing food to ensure that she will grow and thrive. It’s a tricky balancing act, but we are more than up to the task. We have our most precious commodity to consider.
Not many Ghanaian kids with Type 1 diabetes are as lucky as Alexandra. I spoke with Alex’s doctor last week, and told her that I was receiving a lot of online support from a wonderful network of parents of children with diabetes. In fact, I told her, besides the advice and encouragement, we had been offered additional glucose meters so that Alexandra could have an extra to bring to school, and one we could keep for an emergency.
When I mentioned this, Dr. Renner pointed out that the majority of her T1 patients didn’t have the glucose meters, because their parents couldn’t afford it. The meter that we bought, as soon as we were told of Alexandra’s diagnosis, cost equivalent $62. The meter strips, absolutely necessary meter strips, cost $40 for 50 strips. The lancets for the finger pricks are $20 for a box of 100. The insulin was about $17 per vial. We paid cash for all these things, and we continue to buy the strips on a regular basis. So far, I estimate, we’ve gone through about 250 strips. That would be close to $225.
Now, Dr. Renner told us, that because the parents can’t afford a meter, they don’t monitor their children daily. If they have an extra cedi or two, they might take the child to a local chemist who can check the sugar level there, for a fee. But usually, they wait and hope for the best, and if the child falls very sick, either due to low blood sugar (too much insulin) or high blood sugar (not enough insulin), then they take the kid to the hospital and admit him. It’s actually less expensive to admit a child to the hospital for a couple of days than it is to buy a meter and the needed strips.
What a sin. In the United States and elsewhere, the companies that manufacture glucose meters are giving these out free, like candy, to diabetics. Several parents on the support board had two, three or even five free meters in their house and were kind and generous enough to have them sent to me, through my Mom in N.J. We plan to donate these to the hospital.
Insurance in the U.S. covers diabetic needs, though it varies state to state. In Canada, it’s covered under social medicine. In the Ireland, and I suspect the U.K., they’re also covered. A friend of mine from Ireland told me that meter strips are free there; her husband is diabetic, so she knows. Ghana has National Health Insurance, but it only covers insulin, not the expensive strips. I estimate, in Alexandra’s lifetime (which I hope will be a very very long one), she may use 100,000 glucose meter strips. Isn’t that a frightening statistic? What typical Ghanaian family can afford that? None is the answer.
Don’t third world countries suffer the same medical tragedies as other developed countries? Don’t we have enough injustice here, in all other aspects of life? Shame on LifeScan and Bayer, and all of those other international glucose meter companies… couldn’t you donate a couple of these meters to the hospitals here? No, why not? I’ll tell you why -- because it’s not profitable, and that’s their bottom line. Not helping humanity, it’s to make a Buck or a Pound or a Euro.
Don’t average Ghanaian kids with Type 1 diabetes deserve the same chance to live as Alexandra?
Barb
P.S. I want to personally thank the wonderful people (especially you, Adjoa in Vancouver, B.C. and her sister here in Ghana who forwarded my blog) who have donated meters and strips, for either Alexandra's personal use, or as a donation to the teaching hospital for Type 1 diabetic kids. God bless you all.
----------------------------------------
Originally published July 24, 2008 at Obroni Observations
Alexandra, as a Type 1 diabetic, has two very basic but very specific lifelong needs. She needs to check her blood glucose levels several times every day, and she needs to have insulin administered via multiple daily injections.
Alexandra is lucky. Not because she has Type 1 diabetes, but because she has parents who have the means and access to the things that she needs, in order to keep her alive. Not to draw too fine a point on this, without regular glucose monitoring and daily insulin injections, Alexandra will die.
I and my husband and our family will do all that we can to prevent that. We will ensure that she has her glucose levels tested as often as necessary, sometimes 6 or 7 times a day. And she will have the insulin injections that she needs to bring high sugar levels down, at least twice a day, but sometimes more. And she will be provided with appropriate and nourishing food to ensure that she will grow and thrive. It’s a tricky balancing act, but we are more than up to the task. We have our most precious commodity to consider.
Not many Ghanaian kids with Type 1 diabetes are as lucky as Alexandra. I spoke with Alex’s doctor last week, and told her that I was receiving a lot of online support from a wonderful network of parents of children with diabetes. In fact, I told her, besides the advice and encouragement, we had been offered additional glucose meters so that Alexandra could have an extra to bring to school, and one we could keep for an emergency.
When I mentioned this, Dr. Renner pointed out that the majority of her T1 patients didn’t have the glucose meters, because their parents couldn’t afford it. The meter that we bought, as soon as we were told of Alexandra’s diagnosis, cost equivalent $62. The meter strips, absolutely necessary meter strips, cost $40 for 50 strips. The lancets for the finger pricks are $20 for a box of 100. The insulin was about $17 per vial. We paid cash for all these things, and we continue to buy the strips on a regular basis. So far, I estimate, we’ve gone through about 250 strips. That would be close to $225.
Now, Dr. Renner told us, that because the parents can’t afford a meter, they don’t monitor their children daily. If they have an extra cedi or two, they might take the child to a local chemist who can check the sugar level there, for a fee. But usually, they wait and hope for the best, and if the child falls very sick, either due to low blood sugar (too much insulin) or high blood sugar (not enough insulin), then they take the kid to the hospital and admit him. It’s actually less expensive to admit a child to the hospital for a couple of days than it is to buy a meter and the needed strips.
What a sin. In the United States and elsewhere, the companies that manufacture glucose meters are giving these out free, like candy, to diabetics. Several parents on the support board had two, three or even five free meters in their house and were kind and generous enough to have them sent to me, through my Mom in N.J. We plan to donate these to the hospital.
Insurance in the U.S. covers diabetic needs, though it varies state to state. In Canada, it’s covered under social medicine. In the Ireland, and I suspect the U.K., they’re also covered. A friend of mine from Ireland told me that meter strips are free there; her husband is diabetic, so she knows. Ghana has National Health Insurance, but it only covers insulin, not the expensive strips. I estimate, in Alexandra’s lifetime (which I hope will be a very very long one), she may use 100,000 glucose meter strips. Isn’t that a frightening statistic? What typical Ghanaian family can afford that? None is the answer.
Don’t third world countries suffer the same medical tragedies as other developed countries? Don’t we have enough injustice here, in all other aspects of life? Shame on LifeScan and Bayer, and all of those other international glucose meter companies… couldn’t you donate a couple of these meters to the hospitals here? No, why not? I’ll tell you why -- because it’s not profitable, and that’s their bottom line. Not helping humanity, it’s to make a Buck or a Pound or a Euro.
Don’t average Ghanaian kids with Type 1 diabetes deserve the same chance to live as Alexandra?
Barb
P.S. I want to personally thank the wonderful people (especially you, Adjoa in Vancouver, B.C. and her sister here in Ghana who forwarded my blog) who have donated meters and strips, for either Alexandra's personal use, or as a donation to the teaching hospital for Type 1 diabetic kids. God bless you all.
----------------------------------------
Originally published July 24, 2008 at Obroni Observations
There are other children with Type 1 Diabetes in Ghana!
Who knew?
Late Thursday afternoon, we met with a support group of other parents of children with diabetes here in Ghana. There weren’t a lot of people, but there were enough children there for Alexandra to finally understand that she’s not in it alone. The ages of the children ranged from 1 up to 14 years old. Some of them came with their mothers, fathers, aunties and in one case, grandfather. Not all of the individuals spoke English, some of them were clearly from remote villages, but I thought it heartening that they came all the way to Accra, battling crowded trotros with crazy drivers and long waits in traffic jams, to be a part of this group.
The meeting started out with Dr. Renner asking all of the children to introduce themselves – their name, age, school and how long they’d been “friends” with Dr. Renner. Again, the range was broad, Alexandra and 3 other children were all newly diagnosed, within the last 4 months, and a few of them had been with her for 10 years already.
The first guest of the day was really the most encouraging. Nashir is a 49 year old gentleman, of Indian descent, but born and raised in Ghana. At the age of 7, he was diagnosed with diabetes. He told of how difficult it was as a child, how he had lost almost half of his weight due to incorrect diagnoses for 4 months, and finally a doctor at the Military Hospital saying, “Hmmm, could this be diabetes?” He offered such encouragement, maybe not so much to the children who were busying themselves with the free food that Dr. Renner had begun handing out, but the parents were enthralled. He looked fit, trim and healthy, and his outlook on diabetes – as a disorder, not a disease – gave us all hope and reassurance. It is possible to live a long and healthy life, even here in Ghana!
The doctor was talking about nutrition, and I realized that she was aware of the (mis?)information from the dieticians because she indicated that children shouldn’t be restricted to a “finger” of this or “two fingers” of that, which is the way the dieticians describe the amount of food to eat. She understood that children need to eat to grow. With that in mind, she started passing food around. Oh boy.
Just prior to the start of the meeting, Alexandra had polished off half a dozen crackers and a small juice box. She really didn’t need all this food now, but I couldn’t deprive her, because everything looked so nice. First, juice boxes and then individual trays of fruit were handed out to the kids. Alex had both. Then they passed around sandwiches which we were told were “healthy” – consisting of tuna fish, lettuce and tomato on white bread. It looked nice, but Alex preferred the two meat pies that were handed out to the parents! So, she gobbled that down instead. Then cream crackers were passed around and some weird concoction that woman had donated – she claimed it was milk and juice mixed together, but it was warm and not so nice. A lot of whispering was going on as people sniffed and sipped, and I was reminded of one of the Little Rascals episodes… whisper whisper “don’t drink the milk, it’s poisoned.”
A clinical psychologist was on hand to talk to the children about difficulties, and the kids spoke of being upset that they couldn’t eat sweets like their friends could, and some were upset because they were singled out in school or being called “sickler,” which happened to one little girl who had passed out from low blood sugar. That little girl, well, I don’t think she’s got a glucose meter so she never knows how low she goes. Her mother saw me take out Alex’s meter to check her sugar at the end of the meeting, and asked to see it to show the girl’s grandmother.
The doctor singled me out to list some websites on the board which were very handy, and naturally I listed all of my favorites which have been so helpful to me. She also mentioned that a brochure would be available shortly and that Alexandra was going to be on the cover of it!
By the time we left it was almost 6:00 pm, and Alex was due for her insulin. She checked her sugar – 15.7!! – all that food, I guess. But I gave her her insulin and by the time we got home and she was ready for a snack, she was back to normal ranges.
I’m anxious for another parents’ meeting. Hopefully, by that time, I’ll have some donated meters to give out. These kids deserve a chance.
------------------------------
Originally published September 23, 2008 at Obroni Observations
The meeting started out with Dr. Renner asking all of the children to introduce themselves – their name, age, school and how long they’d been “friends” with Dr. Renner. Again, the range was broad, Alexandra and 3 other children were all newly diagnosed, within the last 4 months, and a few of them had been with her for 10 years already.
The first guest of the day was really the most encouraging. Nashir is a 49 year old gentleman, of Indian descent, but born and raised in Ghana. At the age of 7, he was diagnosed with diabetes. He told of how difficult it was as a child, how he had lost almost half of his weight due to incorrect diagnoses for 4 months, and finally a doctor at the Military Hospital saying, “Hmmm, could this be diabetes?” He offered such encouragement, maybe not so much to the children who were busying themselves with the free food that Dr. Renner had begun handing out, but the parents were enthralled. He looked fit, trim and healthy, and his outlook on diabetes – as a disorder, not a disease – gave us all hope and reassurance. It is possible to live a long and healthy life, even here in Ghana!
The doctor was talking about nutrition, and I realized that she was aware of the (mis?)information from the dieticians because she indicated that children shouldn’t be restricted to a “finger” of this or “two fingers” of that, which is the way the dieticians describe the amount of food to eat. She understood that children need to eat to grow. With that in mind, she started passing food around. Oh boy.
Just prior to the start of the meeting, Alexandra had polished off half a dozen crackers and a small juice box. She really didn’t need all this food now, but I couldn’t deprive her, because everything looked so nice. First, juice boxes and then individual trays of fruit were handed out to the kids. Alex had both. Then they passed around sandwiches which we were told were “healthy” – consisting of tuna fish, lettuce and tomato on white bread. It looked nice, but Alex preferred the two meat pies that were handed out to the parents! So, she gobbled that down instead. Then cream crackers were passed around and some weird concoction that woman had donated – she claimed it was milk and juice mixed together, but it was warm and not so nice. A lot of whispering was going on as people sniffed and sipped, and I was reminded of one of the Little Rascals episodes… whisper whisper “don’t drink the milk, it’s poisoned.”
A clinical psychologist was on hand to talk to the children about difficulties, and the kids spoke of being upset that they couldn’t eat sweets like their friends could, and some were upset because they were singled out in school or being called “sickler,” which happened to one little girl who had passed out from low blood sugar. That little girl, well, I don’t think she’s got a glucose meter so she never knows how low she goes. Her mother saw me take out Alex’s meter to check her sugar at the end of the meeting, and asked to see it to show the girl’s grandmother.
The doctor singled me out to list some websites on the board which were very handy, and naturally I listed all of my favorites which have been so helpful to me. She also mentioned that a brochure would be available shortly and that Alexandra was going to be on the cover of it!
By the time we left it was almost 6:00 pm, and Alex was due for her insulin. She checked her sugar – 15.7!! – all that food, I guess. But I gave her her insulin and by the time we got home and she was ready for a snack, she was back to normal ranges.
I’m anxious for another parents’ meeting. Hopefully, by that time, I’ll have some donated meters to give out. These kids deserve a chance.
------------------------------
Originally published September 23, 2008 at Obroni Observations
Alex's great HBA1C! 6.0% Beat that!
Last week, Alex had to go to the lab for her HBA1C test. We went to do the blood draw on Tuesday and picked up the results on Thursday. For the uninitiated, the HBA1C shows how well insulin and sugar levels are maintained over the previous 3 month period. When Alexandra was diagnosed, her HBA1C was 14.7%. Anything over 10% is poor diabetes management, and all diabetics strive for numbers in the single digits.
Well, drum roll please, Alex's HBA1C was 6.0%!! That is almost as good as mine! (Non-diabetics are usually between 4% and 5%.) Granted, she's still in her honeymoon, so her own body is helping by kicking in a little insulin. But, it means that we're on top of this, and with God's help, we'll stay on top of it.
We go back for another test in December, and hopefully we can stay in that very nice range.
When we saw Alex's doctor on Friday, her jaw dropped so fast and far it nearly hit the desk! I am convinced it's because most locals don't have the tools and means (i.e. money) to keep their kids in range.
On a side note, meters donated by many many people have finally arrived in Ghana and I should be collecting them next week. Dr. Renner will have them in her hands by mid-October when she returns from holiday. I hope that in this small way, we are well on our way to helping other Ghanaian children achieve great HBA1C tests, just like Alex's!
-------------------------------
Originally published September 30, 2008 at Obroni Observations
Well, drum roll please, Alex's HBA1C was 6.0%!! That is almost as good as mine! (Non-diabetics are usually between 4% and 5%.) Granted, she's still in her honeymoon, so her own body is helping by kicking in a little insulin. But, it means that we're on top of this, and with God's help, we'll stay on top of it.
We go back for another test in December, and hopefully we can stay in that very nice range.
When we saw Alex's doctor on Friday, her jaw dropped so fast and far it nearly hit the desk! I am convinced it's because most locals don't have the tools and means (i.e. money) to keep their kids in range.
On a side note, meters donated by many many people have finally arrived in Ghana and I should be collecting them next week. Dr. Renner will have them in her hands by mid-October when she returns from holiday. I hope that in this small way, we are well on our way to helping other Ghanaian children achieve great HBA1C tests, just like Alex's!
-------------------------------
Originally published September 30, 2008 at Obroni Observations
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