Hannah was diagnosed on Wed. with new onset Type 1 Diabetes. I had been noticing some symptoms with her over the last few weeks, mainly drinking tons, peeing tons (even waking up 2-3 times night to go), looking tired, hungry all the time, despite loosing about 4 lbs,... I only discovered that recently when I read online about diabetes and one of the symptoms was weight loss, and although I didn't notice it, I decided to just weigh her to see. I weighed her on her birthday, Sept 6, just to get a 7 yr old weight, so I actually had an accurate weight to look back on, and she was 4 lbs less now, and that is a huge amount for her small body. Even though she was acting fairly normal otherwise, she was irritable and tired much more, recently as well. After really starting to get concerned over about the last week, the final straw came on Wednesday...when she woke up for school, ate a good breakfast and then instead of getting dressed she fell asleep on the couch. She started with a cold about 2 days earlier so I figured it was partly that was making her tired and that she was getting up in the night a few times over the past few days to go potty. So I let her sleep, and when she woke about an hour later she was hungry for another bowl of cereal. So I gave it to her, knowing that she has been extra hungry lately. She got dressed and we made it to school about 1 1/2 hrs late, and her first class is PE, so I figured it was good to miss that anyway. She went to school feeling fine, or so I thought. The school nurse called about 1 1/2 hrs later, and said she had thrown up in class. So I went to get her. I found out later from Hannah she drank a carton of milk for snack, all at once basicly (so thirsty!), and that made her tummy hurt and she threw it up. So she really wasnt sick, but they had to send her home, obviously, which ended up being good. She came home and fell alseep again for about an hour, and I just couldn't shake all these symptoms... now vomiting, but not stomach virus related, and all the other stuff. So I made an appt. for that afternoon at the clinic in Hutch...she didn't want to go and said she felt better, although she didn't look well.
We saw a Dr Anderson, who is actually a peditrician at the Children's Clinic in St Paul who just happend to be working in Hutch that week. He confirmed my suspicions after testing her urine for ketones, and blood for glucose (sugar). Her blood sugar level was well over 500 mg/dl, and should be under 150-180. She had large amount of ketones in her urine as well, which means her body was using fat for energy because there was a build up of sugar in the blood, when the pancreas isn't producing insulin to lower the sugar levels. When the body breaks down fat for energy, ketones are produced, and voided mostly in the urine, which was another symptom I noticed but really didn't know how to describe, a fruity/foul smell to her breath....which is the ketones.
We were immediately referred to Childrens Hospital in St Paul. Hannah's regular Dr was at the clinic, but on call for appointments, which is why we didn't see her to begin with. We were at the clinic a good 2 hrs, after the testing, and results and all the waiting...then Dr Anderson had to quickly organize the referral and called her doctor to come visit with us as well. I was in a little bit of a shock, Hannah was lost and confused. After a few phone calls and adjustments to our normal day, Steve, Hannah and I made our way to St Paul, and Steve's parents watched Bailey for the night. We left home about 4pm, and stopped in Delano to eat, Hannah wanted McDonalds, but ended up only eating 2 chicken nuggets (which was probably a good thing for having diabetes). At least Steve and I got some food before our long night began. Hannah slept most of the way there which was a good thing for the long night ahead of us. We made our way to Children's through rush hour traffic, which added anxiety, by about 7pm. We spent 2 hours in the ER, saw several dr's, nurses put in the IV, which was very tramtic for Hannah ( and us), it took 2 nurses and Steve and I to hold her down for it. Mostly lots of waiting...in a very uncomfortable ER room.
After 2 hours in there it was about 9pm, and they finally took us up to her room. We got her settled in, and we had a resident and then later a student come in to talk to us, evey single Dr we saw asking all the same questions, and having to repeat the entire situation over and over. I was exhausted. Finally Steve was able to leave about 11:30pm, and Hannah and I settled in for the night. She was able to sleep for awhile, until a nurse came in to check her blood sugar and started the insulin. That was all new to Hannah and no one up to this point explained the process to Hannah, it was 1am, so there was no time.....the nurse just finger pricked her in her sleep and she woke up, yelling at the nurse, who I think Hannah thought was me. She said things like, OWE!!! "WHAT ARE YOU DOING?, THAT HURTS, WHAT ARE YOU DOING....and if you can imagine Hannah using her most full toned voice to a stranger, it's not common...not ever, so it was a bit comical, but yet, not. I had to tell Hannah that is the nurse, mommy's over here, they have to test your blood now.
Then she had to have 2 doses of insulin a long acting and correction dose for high levels of sugar. They came back to check her 3 hours later, and that was still a struggle as she kicked and screamed. Her level went way down to 66 and she had to drink juice to get the levels back up and then they have to recheck in 15 minutes...not a good night.
She gets insulin at each of the 3 meals...we count carbs as to what we think she will eat, and give her the appropriate dose of insulin for those carbs. All snacks and any food in between the meals all has to be accounted for with insulin. There are a few "free" foods that have no carbs such as meat, and cheese, eggs, and a few others, but not things Hannah typically thinks are snacks. But if she eats those things they are not counted in the carbs, nor does she get insulin for eating them at anytime.
The next morning at the hosptial Steve came back about 10:30am after getting Bailey off to school, and we had a full day of diabetes education. Hannah got to do lots of projects with the Child Life Specialist in the playroom while we had our meetings with the nurse educator, pharmacist, dietician, and then finally the social worker who helped us deal with everything ,and get our insurance situation straightened out. We also got to meet Hannah's Dr. finally, Dr Voulgaropoulos, yea.... in other words Dr V. (He has a Greek backround), very nice doctor. He will be Hannah's endocrinologist. There was a whole team working with Hannah's case, including the resident, student, and all the nurses and educators, who were also very helpful in answering our questions. Children's Hospital is a teaching hospital, which is why we saw so many doctors, and people.
It was another long day!! Hannah continued to get her blood sugar checked every 3 hours, and insulin regulated. Her IV drip was stopped later that morning as well. Her cathater was left in just in case they needed more blood work, which they did recheck her Thyroid level, becasue Dr V said it was low. It came back the 2nd time normal. So it will be something else to maybe keep an eye on. They also check all diabetics for celiac disease ( Jes/Jose will be familiar with this). She was negative for that, so at least that is not an issue. Steve stayed with us until the supper check and insulin, which by now they have adjusted her doses many times and was getting the long acting (24 hr insulin) now at supper time instead of bedtime, and her 3 hr insulin went to 1 per 40 grams of carbs, which changed a few times as well. By this time Steve and I are now testing her blood sugar and giving the insulin. That night was hard as she was still fighting, and I was wondering how the heck we are going to do this at home. I kinda lost it for a moment. I regained my inner strength, and then Steve left for the night, to go home for Bailey and the dog.
It was hard because we both missed Bailey's first band/choir concert that night. Steve couldn't make it back in time, with wanting to be there for Hannah, and with traffic getting back home. It takes about 2 hours with traffic, and that just adds stress. I took a shower finally that night and just washed Hannah up with a washcloth.
We had a tad better night Thursday night, Hannah got her blood tested and insulin at 8pm and she got to have chocolate ice cream for a snack. She fell asleep watching SpongeBob (her favorite), at about 9-9:30pm. So I went to bed too....exhausted after only getting maybe 4 hours of interrupted sleep the night before. We got to sleep until midnight then, before the nurse was in again to check blood sugar. Which then it was 201....1 point above Hannah's target range of 100-200, the nurse questioned it and went to check if she needed the 1/2 unit of insulin, and they decided to give it to her, which we know now wasn't the right thing because at the
3am check, she was low, at 70 mg/dl. So she needed juice again tonight. She drank 15 grams of juice, and they recheck 15 min after a low. Which it still was slightly low at 90. So.... some more juice, checked again in 15 min and then it was back up to a normal 157 mg/dl. So you can imagine all the finger pokes in that hour wasn't too fun for Hannah. By 8AM then it was at 169, but climbed to 240 at noon. We just do the correction dose for highs, and then figure in her lunch carbs, for a total--then one shot is only needed.
Bailey came to the hospital on Friday morning with Steve and they got there a little after 10am. We had one more nurse education meeting at 10:30 and the playroom was hosting "Wild Bingo" where the MN Wild hockey wives came in along with Twin Cities Live to record some of the Bingo game. MN Wild prizes were awarded for bingo's, and both kids won something, Bailey got the Wild yearbook and Hannah a Wild calendar. It was a good thing that Bailey came as he was even excited to play and spend some time with his sister, I think he was feeling a little left out and sad that we had to miss his concert. Twin Cities Live recorded all the kids playing and it will air on Channel 5 with John and Rebecca on Wed Dec 10. "The Wild wives with some courageous kids" Check it out if you live in MN, otherwise we'll probably be taping it. It was kinda sad cuz some of the kids had to play from their rooms, they were too sick to leave their beds. So they had it hooked up to the TV's and they called in with their bingo's.
Hannah got her IV cathater taken out Friday after lunch, and we got packed up to go home after we met with Dr V once more at 2:30pm. He was very reassuring, as we thought Hannah was getting a bit better with the checks and shots, although she was still crying and fighting us a bit, they thought we were doing well and discharged us before supper. We thought we were staying for supper. It was good, it got us through the Cities before it got too backed up and got us home not too late. We stopped at Coborns on the way home for groceries, since we had no food in the house. We taught Hannah in the hosptial about carbs and where to look for the number on the packages of food, so at the store , she had to look at everything for the carbs number. It's a start for her to learn simple things about her disease.
So getting a few groceries took a bit longer than expected, and we decided to stop for Subway in Cokato before getting home. So once getting home, before she could eat we had to test her blood and give her insulin. We got home about 5:30pm and it wasn't the ideal situation, to finally be home, and have to do this to her in a new environment. Needless to say it was a bit stressful for all of us and she fought us more then ever. She was scared, we were stressed... nobody's fault, just a bad situation of coming home and having to do this right away...we did get it accomplished and she ate and was fine. Steve and I hugged, cried, and knew it only had to get better from here.
Poor Bailey, he just stepped out of the way and probably wondered, why this all had to happen.....he always has more questions that are taking awhile to get answered.
It did get better, yes she is still crying and putting up a struggle each time, but slowly I feel it can and will get better. It's all just so overwhelming right now. Like I'm wasting time typing this huge blog, when the house looks so messy, the kitchen table is one huge pharmacy right now, the laundry is piling up in all corners , papers, books, everything is caotic. Nothing is clean, nothing is organized, it just kills me to see my house this way. Mostly it is staying this way, becasue I haven't gotton up enough energy to tackle it yet, and I had to work both Sat and Sunday nights as well, after just getting home Friday night. I will have the next 2 weeks off though now, so that will help..... going back to work on the 20th.It won't help money wise though, because Steve is home now more too, but we need the time to regroup our life anyway.
The house is decorated for christmas though...ahhhh. One less thing to get done. I think if I didnt' have the tree and decorations up already, it wouldn't have gotton done this year. I still hope I have the energy to make cookies and such yet, Hannah so loves that part of christmas, so I will have to do it for her.
Anway thanks for sticking with me until the end of this blog....if you made it this far then I know you care. It's me just kinda blabbing what happened...now I can just update and it won't get so extremely long. Sorry, it took a few days to write this little by little as well.
Hannah is doing well this weekend, we have had good overnight levels, and the just before lunch readings have been high. Otherwise no lows yet. We have to call the nurse educator on Monday with our weekend results, and see if there needs to be any adjustments made. Monday we will also go to the school to talk to the nurse there to figure out the plan for the school day....which the first few weeks there will be more checks to see how her body handles everything, like gym, recess, lunch, snack, end of day, and walking home. I will be available for the next 2 weeks to go to the school at any time if Hannah wants me there or if the nurse needs my help. Steve will be home more the next several weeks as well. Pray that it goes smoothly. After Steve and I talk to the nurse she may stay for a 1/2 a day of school and hopefully go back Tues morning. Hopefully after a few weeks she will only need the before lunch check and insulin--so once a day and maybe then again just a check before she leaves for the day and walks home. I can always go pick her up too to avoid the end of the day check and I can just check her at home and give her insulin too, if she wants a snack.
Steve is way more into all of this than myself, he is very good with the numbers and math, which it takes me a little longer to figure everything out, but I more second guess myself, trying to get everything to be perfect, where as Steve rounds things off more, guesses serving sizes more, where I need to measure. But it all works out, we compliment each other, and it's something we have to work together on. I know I couldn't handle this myself without him. It has gotton us to communicate better, we are figuring things out together, and esentially it's one of the biggest things we now have in common. It will drive us to find out as much as we can about diabetes. Our goal is to educate our friends and family so that they know as much as we do and could also care for Hannah if needed.
So I think I will end here, and will keep this site updated as best as I can, please make comments on this site, it would be nice to hear from you, or if you have any questions about diabetes--type 1.
Hannah has a recheck in 2 weeks, so we will continue to learn as well.
Keep in touch, pray, and much love to you all.
( FYI--the first song that plays on here is by Hannah Montana, Hannah's favorite singer, it's a song called, "Make Some Noise". Hannah was sitting in the bath tub on Saturday after not getting very clean for 3 days, and she doesn't take baths too much anymore, but likes to listen to her CD player when she does take baths, and this song came on, and I started listening to the words and the tears flowed, for some reason, not even knowing what the song is actually about...it made me think of Hannah and her diagnosis....it felt to me as if it is a song about Hannah, and for her to be strong. So therefore it is now Hannah's Theme song.
It will lift her up, when she feels like she doesn't want to be her....she did say that to me right after we found out her diagnosis...and were packing up to go to the hospital, she said, "I dont' want to be me anymore"....how sad is that coming from your 7 yr old. ?? I reassured her that we love her for who she is, diabetes and all. )
