Since I last blogged. Yeah. I know.
A lot has happened this past year, so I'm going to start with the events that changed my life. I will warn you now, this is a long, long blog.
You might be wondering why I decided to relive this horrific experience. Well, that's easy. There's several things about these events that still make me feel like I failed my baby girl. Even though, in my head, I know I can't change anything, and I didn't know any better at the time, but my heart still breaks when I think back.
I decided to post this, in hopes it might help someone else. If you are witnessing any of this with your child, I hope by hearing my story, that you will act faster than I did.
*Deep breath* Here it goes:
November 18, 2009.
The scariest moment in my life, hands down. I've never been more terrified.
And it all starts with my daughter, Ryan. She just turned 4 last month, and her little life has changed dramatically since this time last year.
On the week of November 8th, I noticed Ryan seemed to be drinking more water than usual. She's always been a big drinker, so I didn't think much of it. She also seemed a little more irritable than usual, but she hadn't been sleeping all that well. By the end of the week, she was back to taking a nap in the afternoon, which isn't like her, but otherwise, she seemed ok.
On Monday, the 16th, I noticed she kept laying down and was saying she was tired a lot. She was also drinking a ton more, and only eating a little. I asked her several times if she felt ok, and she would just say she was tired. I took her temp several times, thinking she might have a virus. No fever, so I thought her little body was just trying to fight something off.
By Tuesday, she started falling asleep on and off. She would only sleep for 30 min at a time, and she did this several times. Still drinking, and now not hardly eating anything. By the afternoon, I was pretty concerned, so I thought, if she's still feeling off tomorrow, I'll take her in. She still wasn't running a fever, she just seemed tired all the time.
That evening, when I was getting ready for bed, I realized I could see her ribs clearly. This was odd, so I went and weighed her. She lost 5 pounds from about 2 weeks ago. I was really nervous, so I decided to call the dr in the morning.
The next day, Wed the 18th, before calling the dr, I was talking to my mum, who told me that the excessive drinking is a sign of Juvenile Diabetes. I didn't know anything about Juvenile Diabetes, and I thought, she doesn't have it. We don't have a history of diabetes in the family. I've never even known anyone with it, that I recall.
I called the dr and spoke to the nurse, and she said they could schedule me in for the next day, that the dr thought it would be ok to wait until then. At lunch time, Ryan threw up and became even more lethargic. Her breathing became a lot deeper and seemed like it took more effort for her. I called the Dr in a panic, and they said they would fit her in at 4.
I called DH and he rushed home. I had to make arrangements to get Trevor from school, and asked mum to come over and sit with my nephew since I was watching him that day.
We went to the drs office about an hour early, since they were squeezing her in. Once the dr saw us, he ordered some test, but the only one they could get immediate results on was the urine test. It came back with a large amount of ketones, and a lot of protein, that showed she was severely dehydrated. With the way she was drinking lately, it never even occurred to me that she might be dehydrated. He said due to the ketones, he was 99% sure my mother was right, it was diabetes. He told us to go to Cook Children's ER immediately because she would have to be admitted right away. He called ahead and let them know we were on our way.
By this time, my little girl had absolutely no energy, none at all. She could hardly stay awake.
We got to the hospital, and at this point we didn't know how serious her condition was, until we sat down with the nurse. She was going through her usual checking in routine, Ryan was pretty much out of it, when something caused her to pause. She pressed down on Ryan's foot and watched how long it took her skin to change back to normal color. It took WAY longer than it should. She stood up and said "Come with me" and took us to an ER bed.
She said some code to the Dr on duty and the next thing I know, we were surrounded by people, all trying to get an vein to get an IV into her. She was so dehydrated, they worked for almost 20 minutes. Her veins were collapsing because they were so brittle from the lack of hydration. My little girl was barely even crying, and she couldn't even fight them off because she had no energy left. I was beyond scared. Finally, out of desperation, they decided to use the vein in her neck.
They were finally able to get the IV in, and before they could hook up the IV, they needed to get some blood. Once, they got the blood for testing, a nurse had to stand over her and force these HUGE syringes of fluids into her body, because the IV wouldn't have gotten them in fast enough. By this time, Ryan was completely out of energy and had fallen asleep.
The Dr then explained to us, that the test the nurse did with pressing on her skin and waiting for the color to come back, shows the body going into shock. It should only take a couple of seconds, but it was taking more than 5 for Ryan's.
Once the nurse was able to get those fluid in her, about 20-30 min later, they were able to do the test again and the results were good, almost back to normal. They also had the results of her glucose test, which was 598. They said that was lower than they had expected, most people that come in in her situation are more like 800-1100. I asked what was normal, they said between 90-110 for most people.
They also told me that right now was a critical time, they had to watch out for brain swelling that could cause some damage. We needed to check with her every now and then to make sure she could still talk to us, and they would check her pupils to make sure they were dilating the way they should. We would tell her we loved her, and she would say, "I love you, too" in just above a whisper. Then they were very amazed that she opened her eyes and said loudly that she needed to go potty. (Although she fell back asleep before going.)
They hooked her up to an IV and insulin pump and moved us to ICU. Ryan slept most of the night, at least, whenever they weren't waking her up to draw blood or poke her finger to check her sugars. Ronnie ran home to get some clean clothes for us at about 10. While he was gone, the IV they had in slipped, and the fluids were no longer going in her vein. I noticed she was swollen and told the nurse, and they had to pull out the IV. But they needed to get it back in ASAP, and she still wasn't hydrated enough to get a vein anywhere. They poked her a dozen more times, then decided that their only hope was the other side of her neck.
This IV was much more terrifying than the last time, because Ryan had gotten some of her fight back. Last time she didn't have the energy, this time she was using what little strength she had to try to fight them off. She was screaming and crying, and I couldn't do anything. It was so hard, because I knew it was something that had to be done, but to listen to your child scream "Leave me alone" and "Get away from me" and not be able to do anything hurts, like you've been stabbed through the heart.
Once they were able to get that IV in, everything else went pretty smoothly. I didn't sleep hardly at all that night, but the next morning you could see a huge difference in Ryan. She was up and watching TV for a couple of hours, then she would nap. She finally asked for some food later in the day and the dr ok'd it, so she ate a whole big bag of tortilla chips. Her sugar levels were down, and they were just waiting on the ok from the dr to get us out of ICU and into a room.
We had also had a visit from the diabetes nurse, and she had dropped off a backpack full of stuff for us. In it, there was a book on diabetes, and a blood sugar monitor. We also then found Rufus, a little stuffed bear who also had diabetes.
We finally got into a room late that afternoon, and we began to learn more about diabetes, and what we were going to have to do to live with it. We have to count carbs, and the insulin she gets is based on the carbs she eats. She will have to have an injection with every time she eats, with the exception of a few carb free foods (less than 5gs of carbs) like cheeses, meats, some raw veggies, sugar free popsicles and jello, and sugar free drinks.
The nurses were fantastic, and Ryan was enjoying the attention by this point. She was even more excited to find out that she could have sugar free Popsicles and cheese sticks just about whenever she wanted them. The next day she had several visitors, and had a ton of gifts. She later told me, after everyone left, that she was glad they all came to her "party" and she had a lot of fun. She was up and running around with the kids when they came.
DH and I practiced count carbs, calculating her insulin dosages and giving her the injections. The diabetes nurse checked in and educated us as much as she could in those 2 days.
We were finally released that Saturday, the 21st, and we were sent home with tons of help, books, phone numbers to call with problems/questions, and with strict instructions on when to check her blood sugar levels (with every meal, right before bed, and at 3 am every night. I was so exhausted at this time) and how much medication she needs. We had to call in her numbers every day, and they are still making adjustments to her meds.
Overall, it's been quite and adjustment.
Now, we have to check her sugar levels with every meal. She still has injections whenever she eats, but she's a pro now. She even helps give herself the injections.
My son, Trevor, who is 7 and Ryan's best friend in the whole wide world, is helping her, also. He will help check her blood sugar, and he will also hold her hand if she's having a rare moment of protest to her injections. He's such a loving big brother. He adores his sister just as much as she adores him.
I'm so lucky to have the two most amazing kids in my world. Even through the rough stuff, they are both so, so strong, and from them, I find my strength.
Tuesday, May 11, 2010
Since I last blogged. Yeah. I know.
Posted by Debi at 7:03 AM