So, I have been reading a lot of mom’s stories about their diabetic children, about their diagnoses, struggles, heartaches and joys. Reading these have brought up a lot of memories, memories that I know I will never forget, but sometimes wish I could.
Before Phil(18 months old) was diagnosed he had been having symptoms for a while. He was constantly thirsty and peeing though his diapers at least 4 times a day. I talked to my mom, my sisters and a few dads and everyone said the same thing…Phil was just going through a growth spurt. I knew they were wrong but didn’t know what was wrong with him yet, so I just followed their advise. I bought larger diapers, I made sure I changed his diapers every 30 minutes and had a full glass of water for whenever he wanted one (during the day) At night I would stop giving him anything to drink about an hour before he went to bed…That didn’t really help because he would just wake up in the middle of the night crying for a drink.
I vividly remember being at my sister’s(mom of 4) house and telling her I thought Phil had diabetes. Eric and a few other siblings were there and they made a joke of it, telling me that they thought I had Munchhausen by proxy! Funny, huh!??! That was only about a week before he was diagnosed.
His thirst started getting worse. So did his mood, his activity level plummeted and he was losing weight. By this time, my husband also thought something was wrong and we made Phil a doctors appointment. I had to work that day and called the doctor’s office. I told the nurse that I thought he had diabetes and I told her all of his symptoms. She told me she would write it on his chart as well as talk to the doctor. About 2 hours later my husband called me. He told me that the doctor thought Phil had the flu. I asked him if the Dr had even asked about the message I left or if my husband had asked about diabetes. He told me that the Dr. didn’t mention it and seemed so sure that it was that flu that he didn’t think to ask about diabetes.
So, what where the doctors orders? Be sure to give him lots of juice to keep him hydrated and pediasure so he doesn’t lose anymore weight. So, I went to the store and stocked up on things I very rarely give to my son now. He slept with us that night, mostly because I wanted to make sure I could give him juice in the night, but he had been having trouble sleeping for a while. He was also having problems breathing and it was just a comfort to have him by me.
The next morning I woke up and started to get ready for work. I noticed that Phil’s breathing was very shallow and sporadic. I laid next to him for a minute before trying for wake him. He wouldn’t wake up. He moaned and would try to open his eyes but couldn’t. I called for Eric and he came and tried to wake him also, same result. Eric’s first thought was that Phil was just so dehydrated. So, we force fed him more juice…trying to get him drink. I remember Eric telling me, very calmly, that he was going to take him to the urgent care at the hospital to get an IV of fluids and that I should go to work…he would call me later…REALLY??? I was so dumbfounded…my kid won’t wake up and I’m supposed to go to work? I thought he was crazy.
When we got to the urgent care the receptionist took one look at him and took us right back to an exam room, she also called 911. The doctors there could not put an IV in because his blood was too think. It was the EMT(my angel) that finally asked if anyone had checked his blood sugar. It seems like such a simple test and yet non of the doctors or nurses thought of it. He did the test and it just read “HI” Up to this point the doctors had still been trying to put an IV in but they were still having problems…once again (our angel) told them to just get him ready for transfer. Once Phil was in the ambulance he put in a central line. I’m pretty sure this is what saved Phil’s life.
When we arrived at St. Paul Children’s Hospital, I was relieved to learn that our EMT’s wife was an ER nurse, that he had called her while we were in route and she was waiting to meet us. After, what felt like forever of getting tests, ct scans, MRIs and just about everything else they could do to him, they moved us to the PICU. A oval shaped room with only curtains dividing the patients. I remember thinking how impersonal that room was. Here were a bunch of parents of very sick children and everyone could hear what the doctors were telling the other parents. We could hear the other mother’s cry, as I’m sure the other mothers also heard me.
When we finally got an accurate BG reading it was 1294…this was after getting insulin for about an hour. The nurse told me that this was the highest BG she had ever seen in a living person. The next 6 days were all a blur. We had class after class and I remember thinking that it was so stupid that they expected me to leave my sick baby and still be able to concentrate. I remember them telling us the part about hypoglycemia and about diabetic seizures. I asked them if that could only happen if we weren’t paying attention to his numbers. Of course they said no but that was still my thought…these things could never happen to Phil because we are going to take such good care of him. Well, last year he had a night terror that made his BG drop so low he had a seizure…It happened on his birthday and was the second scariest days on my life. We do take the best care of him but Diabetes has a way of sneaking up on a person and you never know when it’s going to happen.
Diabetes almost took my son from me twice…and he’s only had it for 2 years. People think my quote on my facebook profile is funny but it is my new life motto(thank you, Leslie!) When offering advice to another FB Diabetes Mom she said “Fix it, give hugs, and move on. Don’t let diabetes be in control, kick it’s ■■■ and have fun!!” And that’s just what I have to do. I can’t think about him having diabetes because it just depresses me. Thinking about what he has gone through already, breaks my heart.
Phil is my hero, the bravest kid I know…and for him, I can’t let diabetes be in control. For him, I have to kick some ■■■…hopefully, the having fun part will follow!
Great read and scary. I think it is better to err and think of diabetes first than rue later. The tests are so easy to do. Everyone, each and all, must get awareness. The awareness program must be made compulsary.
Wow. Have you ever thought about being a writer? I have a short attention span but I was sucked into this story as if I was there. That is crazy though. I can’t believe the doctors missed all of those symptoms. Good luck with everything. It sounds like you’re doing a great job.
Well said!!! Thank you! He’s so lucky to have a mom like you!
You are a great mom!! And unfortunately doctors brush mothers’ concerns away and give the child the diagnosis that is most common. As a mom you knew something was wrong and nobody would listen. Now you will kick ■■■ to make them pay attention.
Wonderful post. I agree with Kathyann. All too often we get brushed aside when you know something is off. You just gotta put your foot down harder and it’s ok to make a scene if needed. If that’s what it takes…then kick ■■■.
Keep doin what you are doin.
I cried and got chills reading your blog. My heart aches for you and Phil and what you had to endure. All I can say is with a mother like you by his side he will live a “Kick ■■■ Life”!!
I think that all people should be tested for diabetes when they are not feeling well…no excuses, mandatory testing.
Your blog is excellent and I identified with so many parts of your story as we too had a hard time getting a correct diagnosis until she was in DKA. I remember that she would only drink a little bit of breastmilk and orange juice and chocolate chips (!!) which is horrifying to think about now, but I was desperate to feed her something and those were the only things she would eat or drink. I can’t describe how terrible I felt when I realized later that the juice etc was contributing to her high BG…
He’s blessed to have a Mama like you. Keep up the great work.
Jessica
Thank you, everyone, for the kind words. It took me 2 years to write this and it was still one of the hardest things I’ve ever done. Re-living all these memories was terrible. So, thank you very much. I really appreciate it!
That brought tears to my eyes.I remember my husband telling me how I imagine things just before our daughter was diagnosed. I couldnt sleep through the night as I was not comfortable with her 6 lbs weight loss in couple of wks, heavy breathing and a small accident she had the previous day at an age of 8. I thank god for not listening to him and taking our child to the doctor. I had no clue about diabetes symptoms but a gut feeling that something was wrong.
Thank you for sharing!! Phil is very blessed…you are an amazing MOM!
Your son is very lucky to have you for a mom! I keep hearing stories like this lately, and it is a reminder to me to trust my intuition, and be assertive with doctors. Good luck.
Thank you, “Phils mom” for sharing that story. It was very moving, and I would like to invite you to share it on another site, “supportersofsurvivors.com”. And, “Kick some ■■■ and have some FUN!” That quote is truly the BEST.
Wow, what a story… yes you never know when it’s going to happen. So glad he survived and he is running around. Hug him tight!
Oh what a brave brave little boy you have. This touches SO deeply…he is your hero…and you, his rock for now.
luv…linda. And keep on kicking ■■■!