Having a Child with Diabetes

Back in September of 1992, my daughter who was going to be 9yrs old that month, asked for the first time if she could have a slumber party Birthday, as she had never had one, and had new friends in neighborhood and wanted to do something cool with them.  So I agreed.  We had set it up for 1 week after her actual birthday on the weekend as had plans already made with family for actual day.

When it came time to start to get ready for her party that weekend, she acted as if she did not feel that great, and I having been with a large daycare of kids for many years, figured she had caught a cold or viral infection, so just kept eye on her.  As the week continued, she did not seem much better, and I had thought about canceling her party, but she said she really wanted it.

The day came of the party, and we went to pick up some movies to watch that night, she did not seem as thrilled, and that night, while all of the girls were there, all in their PJ’s and having fun, I noticed my daughter just not quite the same, when it came cake time, she did not even want a piece, and she was the one who picked out which cake and decorations, flavoring, and all, so was surprised that she did not want any.  Then came a bit later, I noticed, she was wanting to go to sleep before any of the other girls, and as I thought she was not feeling quite well, I agreed and I stayed up with girls watching movies.  I mean, hey, thats what a mom does.

The next morning, she did not look too good, and so I explained to the girls and had they all go home early, when we went to return the movies rented, my daughter actually sat down in the middle of the store with her back against one of the aisles as she said she was just really tired.  We went home, and she just laid and watched the television.

Next day, she did not feel good, so kept her home from school, and I could see it in her face, she did not feel good, she finally told us her tummy was bugging her a bit, but she never threw up or had fever.  I called the doctors office to see if I could get her an appointment, and of course after several minutes of automated garble, they give me to an advice nurse and she tells me it sounds like a viral infection, and to only watch her and she should be better in few days.  Go figure, they would not even see her, just push me off to watch her.

So for the next couple of days, I did just that, watch her, with concern, as she would always go out and play, that girl was always non stop skating, or riding her bike, playing with friends, and she just wanted to lay and watch TV.   I called the doctors office back and again they told me, she just got viral infection and would be of no use to bring her into the office.  So for a couple more days, I just watched and watched her, and my thoughts were beginning to wonder as I knew something was not right with her. 

Then it was interesting as I began to notice her sleep a lot more, I mean I would have to wake her up to tell her to eat something, or drink, and found even on colder days, she would go and put the fan on and lay down on the floor in front of it, and fall asleep.

Then one day, we thought she was getting better, as she came up to us and asked if she could please go to Sizzler, her favorite place to eat because of the salad bar, she loves salads.  So we agreed as knew she had been ill, so that night we went and she got her plate of salad, and then she took one bite, and then within a couple of minutes, she laid down on booth seat and fell asleep.  OK, this was not right I thought.

We took her home and was gonna put her to bed, and she started throwing up, that was the last straw, I told my husband that she was going to the doctors tomorrow no matter what.  I slept with her that night, just because I felt worried about her, she was my little munchkin I call her.

The next morning I called the doctors office again, and they were trying to put me off, and I told them, listen, this is not my daughter, something is wrong, you have to see her.  So finally they gave me like a 6pm appointment that night.  So the time came and I took her while my husband stayed at home as we had a little 4 year old at home with older son also.

I took her in, she was so weak, she could hardly walk into the doctors office, and she sat there, with a room full of people, and she just lay her head on my shoulder and started to fall asleep again.  It was sad to see her like that, especially if you knew her, so joyful and full of laughs all the time.  So we sat and waited and waited, and finally it was her turn to go in.

We got in there, they had her lay on the bed, and the doctor did a quick check over of her and said, oh, it is just a viral infection, just let her rest, I was pissed off, and I told them, NO, you need to check, she does not eat, or drink, and sleeps all time, I have to even wake her to try to feed her a bite or two, she has lost weight, as I could tell it from her skinny arms, and they were trying to send us out the door, I refused, and told them you need to check her again!

Then the doctor said, OK, maybe she a bit dehydrated as she not drinking or eating good so she would run a blood test to see.  And she said she was gonna make it a stat test and then to come back with the results form the lab, which to my luck, was connected to the clinic and hospital, all in one combination.  So as we got up to go, they noticed she was very weak, so they gave me a wheelchair to take her in.  So off we went.

I did not think too much at time, except that they pissed me off, and I also thought OK, maybe she just dehydrated like they say.  Down the elevator we went, across the walkway to the other building, we got to the lab, connected to the hospital, and it was so dang busy, my gosh.  But they said as was stat orders would be pretty fast, so we waited, it was a bit till she got her turn, then it was almost an hour for us to wait for the results, an hour! 

The lab tech came out and came up to me and told me that they had her results and the doctor was waiting for her to return, and to go back right away with the envelope with results, and he helped me put her back in the wheelchair and I took off.  And any mom would wonder, why did he say it like that, it worried me, so I took a look at the lab slips myself, well, let me tell ya, unless your a doctor, it’s all mumbo jumbo.  So I knew nothing, but was worried, and did not want to show her I was.

We got back to the doctors office, they let us right into the other room, a doctor came right in, was looking at her results, and at my daughter, and before I knew it, they had another doctor in there, they had a cart with stuff and started hooking up an IV to her, I knew not what was going on.  Then it really worried me when I heard the nurse come and tell the doctors that patients were getting bit upset about how long it taking and they told them to tell them they would have to wait, they had an emergency here.  An emergency here, those words rang in my ears, what was wrong, what was happening to my daughter.

Then one doctor left the room while another asked me if I had any family members with any type of diabetes, I did not know what she was talking about, and I said I don’t think so but will call my husband, and she took me to a phone and said to call and that they were sending for a transport to come and take my daughter to the hospital.  I was like, what!  But I had to think first things first, call husband and ask him.

I called him and he said that only one he knew of was his mom with what is called type 2 diabetes, and that it mostly forms in older adults and she takes a pill for it.  So I told him they were putting her in the hospital and he asked why, of course I did not have an answer, as no one was answering me.. So he said he was on his way.

Two people showed up with a gurney to take my daughter to the hospital, I watched as they put her on it, IVs and all, and we started out the main office door and I watched as all the parents and kids stared, wondering what was wrong with the little girl, why were they taking her away in a gurney, heck I would of wondered the same thing in their shoes.

We got to the hospital, and before I knew what was happening, we were by some big double doors, and they were locked and they had to be buzzed in, and they told me to have a seat in a little baby room with like only 4 chairs and a phone and told me to wait and they would come get me after she was all settled in a bed.  I knew not what to do, so I did what they said.  While I sat there and waited, I called my son and told him to start calling parents as I did home daycare and cancel them for the next couple days till I knew what was happening.  After about a half hour, my husband shows up, he asked me where she was, and I told him they took her through those doors, and he said we were going in if they liked it or not.

As we approached the doors, I got a better look at the writing on them, it was a critical care unit.  My God, my daughter was put in a critical care unit, why?   What was going on?  I was so both tired and confused and frustrated at the whole thing, the whole day.  A nurse took us into her room, they had her attached to all kinds of monitors and hooked up to like 3 IVs, my little girl looked so pale, so thin, so lifeless.  I just wanted to get her and hold her close, she could hardly even open her eyes to look at us.

A guy come in, he did not look like a regular doctor, but now days, how can you tell, they were all kinds of clothes, even street clothes, blue outfits, and all that.  We asked him what was happening.  He told us that she had what they call Ketoacidosis, which means her sugar level was very high, I heard hers was in the 600’s and normal is about 80-120,and that when its that high, a toxin develops in your blood, and it is fatal if not taken care of.  I called him on it, I asked, how do you know that?  He told me because of her lab results.  And they contacted a specialist and they are talking to him on the phone every few minutes and he is telling them what to do.

She had to go potty, so they did not want her trying to walk, so got her a potty chair, but as soon as she stood, she started throwing up, so back to bed  she went.  I just sat there, for hours, watching her sleep, watching them come in and take blood every hour, poking on her with a needle type thing (which later found out was a blood testing needle for sugar levels)  and I just watched, I was so scared, I shook inside, I had chills when the room was warm.

Finally around 2am my husband said that I should go home as we had the baby at home, and he would stay the night with her and they told us that a specialist would come in the morning to see her and that I could be back when he came at 10am.  So I got ready to leave, and it was hard, but I knew I had a young one at home also.  As I was about to leave, the nurse came up to me and gave me a piece of paper with a telephone number on it, she said to call them, the nurse desk, when I got home, so they know I got home safe.  How sweet it was of them to think of me, they must of been able to see the stress in me.

On way home I stopped and got my older son some take out food, yep, even at 2am as he had missed dinner as we were at hospital all night.  But when I got home, I just sat down and cried, and cried, and cried, I was asking god why did he do this, why, what did she ever do to him, please don’t take her away from me.  I know my older son was very worried also, so the three of us slept in same bed.  The next morning I had let older son stay home from school for two reasons, one was he was up all night with everything going on, and two, we still did not all about his sister.  I arranged for his grandma to come over and stay with the two of them while I went back to the hospital.

I got up and went to the hospital about 9:45am and found that the specialist was already there, and he had looked her over, and was just finishing up.  He asked me and my husband to step outside of my daughter’s room with him to speak to us.  He had said that she was very very ill, and that to be honest, if she had not gotten to the hospital in another day or two, she would of just went to sleep and never woke up.  Those words went so far deep inside me, I felt sick to my stomach.   He said that they had to monitor her very closely and see if they can fight to keep her out of a coma, as that is why she was sleeping so much at home, she was starting to fall into one.  He even said it was good that I kept waking her to try to eat or drink or things could of been worse also.

At that moment, I did not care of anything else, but my daughter, I told myself that I would not leave her side, and I did not.   She stayed two more days in the critical ward until she was able to sit up a pinch and talk some and drink some fluids by her own mouth.  But she still had monitors and IVs.  Finally they said they were going to move us to a regular room on the childrens floor of the hospital, but they also told us that she had contracted juvenile diabetes and she would have it for the rest of her life, and that she would have to learn how to do testing, shots, the whole nine yards, and she would not be able to leave the hospital until she learned all of these things, and, until her dad and I did also.

It was like being back in school, we both took the week off, and we sat there each day with her and watched movies all trying to describe what was happening to her, which, I won’t go into the medical detail, because it depends on how one got it and how severe, to know the exact treatment.  So we learned, as she did every day.  We all learned how to use a machine and a special needle pen to take a prick of her fingertip to bring blood to put on a special strip, then to place this strip in a special machine, then learn how to read the results, how to take the insulin, a liquid that your body is suppose to produce and when it does not for any reason, you need man made insulin to supplement the loss in your body and control your sugar levels.  The worst, was to learn to give her a shot, 3-4 times a day, a small 2 inch needle, that looked like 10 inches to her and me, and we had to learn how to put the correct level of insulin in it and give her the shots.  To calculate what her sugar levels were, what amount of insulin to give, it was a mathematical job to learn all of this, but we had to learn it, and we did.  They would not let us leave until we did.

Books and books did we read in between videos, and they gave her a special kid type one to color in as she learned.  She continued to have the IVs as they said her potassium level dropped severely when they started the insulin injections, and so she had to have an IV to build it back up.  I can remember hearing all the monitors beeping all night long, and the alarm to the IV one going off if got clogged or such.  We had to learn she had to eat special meals at specific times, and snacks and such.  Gosh, I did not ever know, how complicated it was, until I was dealing with it myself.

Her teacher brought her some homework, and a very very large big poster paper that all the kids in her class drew on for her and made cards for her, it was so sweet, the nurses hung it up on the wall right across from her bed.  And she did feel better seeing it at times.  But she would ask me, why?  I did not know the answer, so one day when the specialist was there, I told him, she wanted to know why?  Did she do something wrong?

He sat down with me and her and he explained to her, that NO, she did not do anything wrong, there are different reasons why it happens.  Most of the time it is heredity and yet no one in the family or close family had it.  He told us that he believes that it all started with a viral infection, probably years before, and that it settled in her pancreas, and after years, it attacked it enough, that it made it stop working.  He said it happens this way sometimes, and that she should not blame herself, or anyone else.

Finally an answer, something to help us make sense of all that had happened.  So that helped to settle my mind a bit, but not ease the pain.  The pain to see her go through all of this and at 9 years old.  One week after her birthday, her life has changed forever!  There was nothing anyone can say or do to console that feeling.

After about a week and half in hospital and both her and her dad having to give her the shots in her legs and arms and butt to learn all spots can do, and after she also had to learn to do in her own leg a few times, they said we could go home.  We took her home that day, knowing things will never be the same as they day we walked in there with her that night she first was seen.  My emotions of how I almost lost her, another day or two kept going over and over in my mind from what the doctor said.  Why I was asking myself, why did the doctors office not see her sooner.  I was even more pissed when one doctor, the one who seen her first night, had the nerve to ask me, did I not know the symptoms?   How the hell could I know the symptoms of diabetes when I or no one I have ever know has had it!

We had to stop and buy a few things before we took her completely home, I sat in car with her while her dad went in and had to buy alcohol wipes, bandages, special kit called Glucagon, that if her sugar drops too low, its an emergency shot to take and bring her back, she had to have 3 kits, one for home, one for school, and one in a tackle type box we had to buy for all the supplies of needles, test strips, Ketostix, which test the sugar level in her urine daily, all of these things, the box was full of supplies, for a little 9 year old girl.

We got home and had a few of her friends there to welcome her, some sugar free pudding and jello as a treat after week of hospital food, and she was happy, but at the same time, tired, as they said she still might take a week or two to really recover and rest up.  So we had to go and talk to the principal and set up some special homework for her while she was out.

Now, that was the beginning, the beginning of the change of my daughter’s life, my life, the whole familes life.  No matter what the text books say, all the medical terms they use, it is different for each individual, each family, each child, even each adult as they get a different type, type 2,which can mostly be controlled with pills.

A child to deal with shots for the rest of their lives, to be told when you get it as a child that usually complications start within about 10 years after getting it.  How does, how will, a child, or parent, ever cope with that?

There is a lot more about my daughter and things she went through during this time, she is now 25, and so much has happened to her over the years.  But the most important thing is, she is alive, she is here with us.

{If your interested in knowing more, or would like to request me to continue on with her story, please just comment and I will be glad to oblige, as it is good for someone to know the process that a child has to go through with this on a everyday level and feelings, compared to what a text book has to tell you.}