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.
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Originally published September 18, 2008 at Obroni Observations
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