when he was diagnosed

Jess - posted on 03/03/2010 ( 2 moms have responded )

Brian’s story
I was so glad to see that silly dilly was over his cold. He was only seven months old and I always worry about my babies, especially before they are old enough to tell me whats wrong. Now I just had to wait until it cycled through my other two. Brian had already started sniffling, for some reason this cold seemed to be hitting him harder then it did Dilly. Brian was older then Dilly by only one year so I watched him close when he seemed to be less energetic then usual. I put him to bed a little early and checked up on him a few extra times during the night, but he slept well and he didn't have a fever so I went to bed. I got up the next morning and proceeded to get ready to leave with my husband. He had an appointment at the eye doctor. Brian was still acting tired but it was early, he might rebound by lunch I figured. The appointment took a little over an hour. We got home and I prepared the tub for the babies. I started undressing Brian and to my horror his backbone was showing. I could count his ribs and he even seemed lighter. At this point I was really confused. Dilly had been fine after the cold. Could these symptoms even be related?

I knew I had to get him to the hospital. Once we arrived they did vitals and blood work. The vitals were ok and he didn't have a fever. When it came time to draw blood they could only get one tube, so they ran tests for an infection. Two hours passed as I waited with my chubby bubby (that's Brian's nickname). He was playful at first sitting on the bed coloring and goofing off but he became even less active as time passed. When the doctors came to see us they said " We didn't find anything in the blood and we might release him soon." I was outraged he seemed to have lost every ounce of energy waiting for the blood work. He was just laying on the bed with dark circles around his eyes, acting lethargic. Anyone who saw him could tell there was something seriously wrong. The doctors decided to do more tests. I sat there watching him get sicker by the hour and finally by ten o'clock at night they came to me and told me why his body was withering before my eyes. He was diagnosed with diabetes. His sugar was over 1200 the normal is between 80 and 120. In an attempt to get rid of the sugar in his system his body was burning up all the fat. When this happens the process of burning fat so rapidly creates poisons in the body. My baby was dying.

As I looked at my little boy I wished with everything I had that I could take the pain from him and make this all go away. I couldn't, my baby was on his death bed and there was nothing I could do. I felt the world spinning all around me the only people there were the two of us and as I looked at my frail little angle I thought of everything we had gone through in the short span of his life. And how he was so little and so sweet. He wasn't very vocal but he was always smiling and doing goofy things to make people laugh. I always knew he would become a class clown because it seemed to be his goal. Now I'm not sure he is going to make it to school or even to tomorrow. There is nothing worse then looking at your baby watching him get weaker, watching death slowly swaddle your child as if it knows just how precious this little package really is.

The Doctor came back with an IV bag and Said "We have to transport your son to the Albany Med pediatric intensive care unit." I could no longer repress my tears. I didn't want Brian to see me cry, I didn't want him to be scared, so I hid behind his bed till I could pull myself together. I was so scared for him I just wanted to take it all away. I didn't understand how it could happen so fast he was fine yesterday morning. Once I was calm again the doctor told me that there would be no room for me in the ambulance. I called my parents and told them what was going on, they picked me up and brought me up to the other hospital. I don't remember anything about the ride, I think I was in shock.

I got to Brian's room, they had him hooked up to monitors in this crib that reminded me of a prison cell. There were bars that came down from the ceiling and met inches from the bars at the bottom of the crib. He was lying there in between sleep his IV had some clear liquid in it, the room was dim there were pictures on the walls but I couldn't make them out. The nurse came in and explained to me that he was given insulin through his IV I was instructed not to give him anything to eat or drink. Then she showed me how to pull up the bars that kept him locked in the crib and instructed me to put the cage down if I left the room.

I stood there staring at my baby boy he was half the length of the crib his clothes were gone he had on this tiny little gown and little yellow slipper socks, which I had put on his feet at the other hospital. He was so skinny. I stood there for a long time. He didn't roll or move he just laid there taking shallow slow breaths, about twenty per minute, some times they sped up a little but usually they were twenty a minute. I stood with the clock on my right side, I didn't know what time it was, but the minute hand kept moving and he was still breathing. His hair was fine and messy, his lips were open slightly, even in the dark I could see the rings around his sunken eyes, they were darker then before. He was so sick still he took those slow shallow breaths.

He finally started to move. He opened his eyes and asked in a low tone for his bottle. When I told him I wasn't allowed to give him any drinks, he started crying, he was so thirsty he couldn't help it. It was the first time he had cried all day. When he cried his voice broke, it reminded me of the way a tropical storm sounds when it is at the end of its life. It lashes out fiercely but it doesn't have the strength to sustain its self, so it comes in waives. In and out between the peaceful silence of a quiet sprinkle and the painful scream of pounding rain and wipping winds that mean for destruction. All I could do was touch his head and caress his little body. Then I sang him a song that I sing to all my babies at night time, I sang "I love you forever, I like you for always, As long as I'm living, my baby you'll be." Then I remembered that I might be loving the memory of my baby soon. It ripped my heart out to know that I couldn't help him but I stood there singing over and over again "I love you forever, I like you for always, as long as I'm living, my baby you'll be" and he started to settle finally. I must have sang it at least twenty times before he went back to sleep but that's ok, he was comfortable again.

Brian woke up a few times after that I put him back to sleep the same way time every time. I pulled my chair next to his bed and sat there all night long, only moving so that the doctor could check his vitals and take blood to test his sugar levels. By the time the sun was coming up his sugar was down to 900 the doctor who had been monitering him all night let me know that Brian's sugar was starting to drop. If they brought his sugar down too fast he could go into hypoglycemic shock which is what they call it when your body shuts down because of an unsafe drop of sugar. He wasn't safe yet but the fact that his sugar was coming down was a really good sign. Often when someones sugar level gets that high the insulin can not work with the body to flush out the extra sugar and the body continues to burn up all of its fat cells.

I left the room to get a cup of coffee after my husband came that morning. I took it all in while I was out of the room, everything that had just happened, Brian was going to live. I was so relieved but it was a bitter sweet feeling. My baby was going to live out the rest of his life never having the normalcy other kids do. I watched over him for the duration of his stay in the p.i.c.u while his sugar slowly rebounded. He was off the IV and receiving shots by the second morning there. In the mean time I received training on how to test his sugar, give him insulin injections and adjust his insulin levels. On the third morning he was eating and drinking again and we were released on the forth morning.

It has been one and a half years since he was diagnosed and still not a day goes by that I don't wish I could take his diabetes away from him. He has to be watched very closely at all times for signs that his sugar is low. That is when he is prone to hypoglycemia. It isn't always easy to see. Sometimes its a look, or the way he is walking, or it could happen without any signs. His sugar usually only drops when he is excited. When my oldest son started preschool Brian's sugar dropped half an hour after I dropped Andrew off at school every day for the first week. The first time Brian went to Chucky Cheese his sugar dropped while he was sleeping later that night. He passed out at the Christmas party last year. Every time his sugar goes low could be the last night of his life. Some times he just goes to sleep when he goes low other times he has seizures first. Every day he takes six shots. There are days that he has welts on his arms or legs from needles and on those days he says to me "No mommy, please don't hurt me" but he never cries.

Brian is really the toughest kid I have ever seen though. He never cries when he gets a shot, he even pushes his own shots sometimes. He tests his sugar all by himself ( he is so proud of that and so am I, he's only three ). He also eats really healthy. We have all adapted. I no longer fear that I might out live my son. It was tough at first but I don't even think about it unless its in my face. If we take good care of him he should live an almost normal life. He might even live to be sixty years old. Regardless of how long his life is I will always wish I could take his pain, and I will help him have as much fun as I can while he is still here.