Still in the dark maybe a little light

[Guest guest]

I feel like there isnt a lot going for right now.

We had the 5 hour test yesterday. It was a long day and he

cooperated so well Iam so proud of him.

They gave him half a bottle of the orange drink and they did the

bloodwork through an IV. His nero and I were present other then that

the only time we seen anyone was once every hour to pull blood.

The nero wasnt happy. She wanted the endo to spend some time

observing william.

Well they gave him the drink wich he said yuck this tastes like

snailsnot. They didnt poke his fingers at all. The nero asked for a

meter that they said was accurate.And she had our meter. Well she

took his first blood usgar 15 min after test started first reading

was 450. Then she took it right after they did with both meters ours

was reading withen 2 points of the one she had from them. he was 400

at 1 hour 390 at 2 hours 370 at 3 hours and then his face started to

twitch and he said grandma I have dinasours in my head he started to

run to the bathroom and peed 3 times in an hour it was 70 at 4 hours

she got the endo and he said he couldnt have dropped that fast she

showed him both meters he said it wasnt the same as blood from the

vein and couldnt always be believed. started to cry he said

he was now having tornados at hour 5 the nero said probabily just

tied of sitting but as I know that means seizure I told the nero his

face twisted he peed himself and his hand started to shake she took

his bloodsugar it was 25.She pulled the blood for them and gave him

some soda a pepsi and also gave him a glouicose tab. She got the

endo in there and he said it will take 2 weks to get the results.

She told a devistated william that he will be ok and he was a big

boy and he said I wet my pants and she said his bloodsuagr went to

low and that happens that its ok. She yelled at the endo for not

listening to her. He said to her who are you and she told him she is

williams nerologist. He had been talking with the last endo that

thought I was just overprotective. Shegot a diabetis educator in

there that told me a lot about diets and that william must eat 6

times a day and a snack at bedtime. She wants to be called if he has

a bloodsugar that hangs sbove 140 for more then 2 hours. She wants

me to take his bloodsugar before he eats write down exactally what

he eats like I already do amke sure to stay away from sugarand a lot

of fooditems such as potatoes beets root foods. She wants me to take

his blood sugar 1 and 2 hours after eating each meal and snack. She

asked william if all those pokes were ok and he said yes I ratehr be

poked then have a seizure. She gave the nero a number of a child

speciality endo in newyork andone in boston she said william should

be seen by one of them. She said in her 40 years of experiance as a

diabetic and a diabetic educator she has never heard of it taking

that long for test results and she said his blood sugar shouldnt

hang that high that long and then crash down. She is coming to our

house weekly to review his records and meals and she set it up with

his ped 5 minles away that if he has a real high hanging or a low

blood sugar she asked them to do a finger poke and a blood draw.

His ped is only 5 miles away and said they would accomadate us just

to come right in and the lab nurse would take him right in. She said

I was wise ti fight with the first nero and to find a new one who

would listen to me. The nero didnt tell the endo that she was going

to be there she said she might poke in. She feels we should start

weaning william more from the seizure med. at first said he

wasnt ready but the nero sat with him he had withdrawel seizures

with the valporic acid that I had forgotten about but he hadnt. She

told him after that med was out of his system he would feel so much

better and he was happy with that. She did tell himthat he probabily

will have withdrawel seizures from the med but he would feel better

in the end that his gram was there and he could call her if we were

going to fast and she will slow down but he has to try his hardest.

She took his mri films and his cat sans and showed him that they

were both ok. She said she was sorry the last hospital was so mean

about the mri and that she would make sure that noone would ever

treat him like that. She explained that she wants 1 more mri in 3

months and that he would be asleep but gram will be in the same

room. She took him to look at the mri and told him she would tryto

find an open mri and maybe he could stay awake.He was happy after

that. He seen his 1 grad teacher at the store lst night and she

asked how his test went and he said I flunked it but its ok and he

explained how his nero helped him and the diabetis woman helped him

and so will his ped and gram. Hes happy today wokeup with a 73 but

is holding at 96. She told me to try to keep him between a 90 to a

125.

I see alot of positive happening now that I have written this but I

just expected answeres right off. Oh yes Iam to weigh him daily and

keep a chart. So I figure 1 a month Iwill do hieght also.

Well thanks for listening to me. Iam going to take today for william

and brianna and i to relax today. They are in the pool. She knows

cpr and can watch him in the pool. She has seen the seizures and

knows what to do if he has one or if he starts to shake.

in Virginia