Wednesday, February 17, 2010

Lilly's Journey to Diabetes...Graphic Photos

Thank you all so much for praying!! We really appreciate your love and support. I am sorry it has taken me this long to update everyone. I guess I just needed more time to process and get adjusted to our "new normal". I did want to share Lilly's journey and how she progressed to being a normal cute size to where we were 2 weeks ago. This is Lilly just before Christmas. I did notice some weight loss but just attributed it to a growth spurt. That, and in my sick way I was glad to have a thin child.

Fast forward a month and you can see how dramatic the difference is. Notice Lilly's neck and more pronounced facial features. This was at her birthday party the last weekend of January. I think maybe sometime in December or January I noticed Lilly drinking more and more water. I was happy that she loved water and didn't think much of it. She also started urinating frequently and we couldn't go anywhere that she didn't have to use the bathroom several times before leaving. I thought maybe she just had too much to drink. Jenny thought maybe she had a bladder problem. The thing is, Lilly doesn't complain, so I wouldn't know that she was sick.

Here Lilly is on her birthday, February 1st. It was a Monday. This was also Jackson's first day of public school. After we dropped Jackson off at school, Lilly, Fisher, and I headed to McDonald's for birthday breakfast. She didn't eat the eggs I prepared for breakfast. Lilly started to feel puny at McDonald's and didn't really want to play on the playground. She also didn't eat much of her pancakes. Fisher ate plenty, though, and played and got hot on the play area. We went to the restroom when we were getting ready to leave and Fisher spit up on himself. Once we got home, Lilly threw up while on the sofa. I cleaned her up and came upstairs to check my email. I heard her go to the bathroom and she vomited again. I rushed down there to check on her. I got Lilly to lay down after that and that is pretty much what she did the rest of the day. We got Jackson from school and Cory got home shortly afterward. I ran to the store to get the jelly for the meatballs Lilly requested for her birthday. Got home and made dinner. While I was gone Cory gave Lilly some cereal around 5 o'clock. She wouldn't touch her meatballs or anything else. She just layed on the couch and threw up again. Cory put her in the bathtub and when she got out she threw up three more times. I was wracking my brain wondering what was going on. I thought maybe it was something she ate, since Fisher spit up that morning. Oh yes, Jackson got pink eye Monday night, but I just gave him some of my drops. I did send him to school the next day since I was treating him.
Tuesday I called the doctor to get Lilly in for a sick appointment even though she hadn't thrown up since about 8pm the night before-Jackson also for his pink eye. Oh, let me say that the week before I called to make her 5 year well check. I mentioned to the lady making the appointment that I was concerned because she had lost a lot of weight and was drinking and peeing a lot, and she said she would make a note of my concerns. Okay, back to Tuesday. I called to make Lilly and Jackson sick appointments. The girl setting up my appointment said some snide comment about being "that mom" that sends her sick kid to school. Also, I mentioned to her about Lilly's throwing up, which was the main reason I called. I also told her I was concerned about the weight loss, drinking, and peeing. I did tell her that we had a well appt. for the 10th. She said that I shouldn't even mention my concerns to the doctor since we would be there next week anyway. Our appointment was for that same day and so I picked Jackson up from school and we set off for the doctor. Let me just interject here-I suck at picking doctors. The ob I used for Jackson let me go too long before having to have a c-section and he ended up in the NICU for a few days. She was evil in general, calling me fat and I was much smaller back then. Anyway...Get to the doctor's office and in our room. I told the nurse about Lilly's symptoms and that my husband was concerned that it might be diabetes. Then after a few minutes of waiting Lilly had to use the restroom. I asked the nurse if we would have time and she said yes, and to get Lilly to pee in a cup in case the doctor wanting to test her urine.
I gave the cup to the nurse and we returned to our room.
Finally the doctor came in. I told him about Lilly's throwing up and that Fisher did once. He said it was probably a bug, because they had treated about 15 children already. I also told him about the weight loss, drinking, and peeing and that my husband thought she might have diabetes. He did a double take, but didn't do anything about it. He prescribed some anti-nausea medicine and said he would see Lilly the upcoming Friday instead of the tenth, and run some tests then if need be. I cannot say why he didn't test her urine. I don't remember if I mentioned it, but surely the nurse would have told him?? So we left and picked up her prescription on the way home. When we got home I made chicken nuggets and macaroni and cheese. I should get Mother of the Year with that meal!! Lilly ate maybe 2 nuggets and slept on the couch on and off. She would not even play with Jackson.


This is Lilly on her birthday night. Jackson and Daddy had to help her open her gifts since she wasn't even interested.

Here is Lilly on Tuesday, sleeping after the doctor's appt. She mostly only got up to get water or potty. I took this photo to show Jenny how skinny Lilly's arms had gotten. I remember telling my Mom and friends how she reminded me of a friend we watch pass away from cancer.

Wow...this photo is hard to look at. This is Wednesday. Cory had to get off work early for me to go to an appointment and when I returned around 5 she got progressively worse. Lilly didn't eat anything that day either. By about six, she was leaning against the wall to go to the bathroom. Her breathing got labored, and she started to seem to go in and out of it, and her eyes would roll into the back of her head. I decided to call Children's Healthcare nurse hotline. I told the lady Lilly's symptoms and she said to call 911. This photo is while we were waiting on the ambulance. I called 911 again because we live near a hospital and I couldn't figure out what was taking them so long. The lady on the line told me they don't actually work out of our rinky dink hospital. Great...Anyway, they finally got here and took her to a hospital about thirty or so minutes away. Cory told me in the ambulance that her blood sugar was over 400, that their meter only went to 400. He also said that Lilly was going in and out of it and the EMS{?} kept yelling at her. The got to the hospital and took her to the pediatric er. There her blood sugar was even higher, topping out their meter. They determined that Lilly needed to be life-lighted to a children's hospital. The doctor did tell Cory that Lilly did have Type 1 Diabetes. They got to the hospital and finally my Mom got here so I could go be with them. I found out once I got there that Lilly's blood sugar was over 900 and her ph levels were below 7-some of the nurses had never seen levels that high. That is fatal. She had a severe case of DKA-Diabetes Ketoacidosis. You can google it. I know the only reason Lilly is alive and well today is all of your prayers and God. We are not "lucky". Glory to God!!

This is my baby around 1am when I got to the hospital-weighing all of 28 pounds. She was in the ICU thru Friday. She didn't care for being there one bit. In fact, when we were put in a regular room in the diabetes ward, she said she couldn't wait to go home so she wouldn't be pricked anymore and she could eat what she wanted. My heart just broke for her. I told her that wouldn't be the case. That is the hardest thing to do as a Mom, watch your child suffer and you can do nothing about it.
I'll say I don't want to be an extremist, but I have read in several publications and online that cow's milk causes diabetes and/or aggravates it. No offense to the dairy farmers of America, but I have a hard time wanting to give my children that stuff anymore.
The doctors have told us that we don't need to change Lilly's diet{somewhat relieving and alarming at the same time}. We just count her carbs and give insulin to counteract them. She is doing really well and doesn't even cry when we give her shots. Of all my children, she really is the best one to have diabetes. Not that I want any of them to have anything wrong or less than perfect. We went to the endocrinologist today and Lilly now weighs 35 pounds and is eating us out of house and home.
Where do we go from here?? How do I handle the negligence on the doctor's end?? I'm not sure, I am definitely not the sueing type, but the trip in the ambulance and helicopter could have been avoided had the doctor put a strip in Lilly's cup of urine. So simple yet not done.
Things I am thankful for...
*Really good insurance for the children. We shouldn't incur any out of pocket cost for any of this. Praise the Lord!!
*Wonderful friends like all of you that prayed and continue to pray for Lilly and our family.
*A lady from church whose daughter was also diagnosed at five years of age with Type 1-she is now 13. We met them Sunday after church and they had little gifties for Lilly and have offered to be there for a listening ear and baby sitting!! That will be a big help, though I am not good at taking help. Just knowing there is someone around is such a burden lifted. I thought we would be chained to Lilly forever. I know that sounds awful, but I didn't want to not be able to have a life.
*Many others have emailed me with stories of their own young children with diabetes. I will have such a strong network of like-situation people.
Thank you all so much again for your prayers and support. I never in my life imagined that starting a blog would open up this world to me. A world with some of the sweetest, most generous, loving people. I really do appreciate all of you.

*Edited to add:  I removed a few of the pictures.  I felt like they may have violated my daughter's privacy.

46 comments:

Jaime said...

I have never left comments before. Mostly I lurk around, but I saw your daughter's picture on a blog I visit and couldn't help but click on it. I think God had a hand in that. I am 34 years old and I too was diagnosed with Type 1diabetes at the age of 5. My mom has a picture of me that looks so much like the picture of your daughter during the ambulance wait. I just wanted to say: like I said before - I am 34 and I have had Type 1 for 29 years. I have been on a insulin pump for 13 years, I have a 4 year old healthy daughter, and I have had no complications from diabetes. Stay strong, keep your faith, and every day remind your daughter that she is going to live a long healthy life. She can still eat the things she loves, still play the games she loves, and do anything her little heart desires. I will hold you and your family in my prayers. God bless you all!!

Mommyto3andahusky said...

I have been following your posts and I have been praying for your little girl. Give her a hug from us. Diabetes is super tough but I am so glad she is safe and diagnosed so now she can get healthy. Erin + family

mysteryhistorymom said...

Elise- My heart is breaking. I can hardly bear to look at your sweet little one in such a fragile state. You are right- God saved her! No question there. I am so glad to hear that she is gaining weight and that the sun is shining again.:) I have some little packages for you that I just wrapped up today. I have been sick but plan on mailing the goodies tomorrow. Most of the packages are for Lilly (of course!) but there is a little something for Jackson and Fisher- and you, dear sister. Love you bunches! I am so proud of you... Lori

3LittleByrds said...

I've been lurking on your blog for awhile now and especially since Lilly's been sick checking for updates. I'm so sorry to see all yall had to go through. Diabetes can be a scary thing and your right to give God the glory because it was all him. Looking at her poor pictures I can't believe the doctors couldn't see how sick she was. I'm not the complaining type either but that practice needs to be aware of how close you almost lost your child due to them not taking the time to listen to you and run some simple tests.

Jen~ Lipstick and Laundry said...

I am so thrilled she is back to her happy self topping the scales at 35 pounds {today} hahahaha
The power of prayer is AMAZING!

Robin Beck said...

Wow Elise, it really is only by the grace of God that little Lily is still around!
I'm so thrilled to hear she is doing so well-God is amazing!

I hope you are doing well too-You have been through so much here lately! Take care sweet sister~♥

Love,
Me

Amy R. said...

Wow! It was good to hear your account and testimony to prayer! I can't believe she is already at 35 lbs...amazing! Praise the Lord for protecting her and giving you the grace when you needed it!

Sandy, Sisters of Season said...

Any Mother knows how difficult it is to watch your child suffer and there's nothing you can do . . my heart goes out to you guys. It good to hear that Lilly is doing much better. Prayer is so, so powerful and our God can do the impossible. Faith is what moves God's heart. Stay strong and God bless Lilly!

Lindsay-ann said...

Hi Elise
I am so glad to hear that Lilly is doing much bettter. It must have been so frightening for you. She is still in my prayers.
Lindsay

Erica said...

Elise,
Thank you so much for the update on Lilly. I'm so glad that she is doing better!!!! You all have been in my prayers and will continue to be through this new journey.

Anonymous said...

Wow! That was really hard to look at for sure!! I am so glad that I saw her looking well and playing this week~ praise the Lord for this! Love! Dana

Laura said...

Elise thanks for the update. I am so glad that Lily is doing better. Thank you Jesus!!! Ive been praying for her and your family everyday. I hope she continues to do good as she and the family learns and deals with her diabetes.

Joanna said...

Thank you for updating us. I was wondering what was going on.

I am so sorry that she has been so sick. And it just makes me so MAD that the dr didn't do anything about it. And it wouldn't have been no time at all for them to throw a strip in her urine. Ugh. That is a case that most dr's are there for the money and not to help their patients.

I am sorry that you had to take such a horrible journey but thankful that Lily is alive and well. It's great to hear that she is taking her shots well and eating again. That is awesome that she gained all that weight!

I will be keeping her and your family in my prayers.

jamie said...

Elise I am so glad that Lilly is feeling better. Those pictures brought tears to my eyes. Lilly sounds so much like my 7 year old son. Not one to complain either, which is always hard when he's feeling sick because I never really know how bad he feels. I'll continue to pray for your family as you adjust to helping Lilly stay healthy.

Deb said...

Thanks for updating us on your little one. I've been praying for her and your family. Some people say all we can do is pray but it is the best thing we can do for others. I'm so glad she is feeling better and I do understand your feeling of being chained to her forever. I'm glad people in similar situations have responded and don't turn down help. Sometimes it is harder to receive than to give!

Torey said...

Regardless of whether you sue the doctor or not, you should certainly report his negligence to the rest of his practice, or the hospital system that he is affliated with. You certainly wouldn't want him to ignore another sick child like he ignored your daughter. He needs to be held accountable. I can't even imagine why he didn't test for diabetes when you mentioned the weightloss and frequent urinatation as those are 2 classic symptoms. It doesn't take a rocket scientist to figure this out and you even told him you thought it might be diabetes. Even if you don't sue you can certainly threaten to and send some pointed letters. The doctor should not be able to get away with letting your daughter almost die. Sorry to vent to much, but your story was so heartbreaking, although praise the Lord you had a happy outcome.

Darlene said...

Elise, I had tears rolling down my face while reading this post. Lilly was soooo, SOOOOO sick and thankfully prayers, along with God's Glory pulled her through. I am so thrilled to hear she has bounced back to her lively self and is gaining weight and doing well with the insulin shots.

As for the Doctor, I am with Torey. The MAIN symptoms of diabetes are weight loss, extreme thirst and frequent urination and NO Doctor should miss those signs when a parent is telling them that. Such a simple test and it was not done. You definitely need to let the Board and the Hospital know of the negligence.

Again, I am soooooo happy for your family that Lilly is back home and doing so well. She will continue to be in our family's prayers.♥

Michelle Whitlow said...

Hi there! I just found your blog and I am so thankful that your daughter is ok!!

I had a similar incident recently with our dr's office but with the office nurse, not the dr. Let me first say that I am NOT one of those overreactive kinds of moms. My came down with what we think was the flu. 3 days after I called the dr's office to talk to the nurse because I was concerned that she was SO congested, not just in her head but in her chest. Well, by Sat she developed pneumonia (but we didn't know it yet) and by 5am Sunday morning we were in the ER. The dr told me to call our pediatrician the next morning to set up a follow up appt. I called. The nurse told me I shouldn't even bother, they could just see her in 10 days after the antibiotics were done. I still took her in Tues. By then my daughter was screaming in pain. Got an xray, pneumonia was no better so she was admitted. By the next day it was actually worse and they sent us up to Atlanta to Childrens. We were there for another 7 days. She almost required surgery but thankfully they figured out just what bacteria was causing it and gave her some heavy duty antibiotics. She even came home with her PICC line and had IV meds for another 2 weeks.

Let me tell you, I made my views known to the dr about how upset I was at her nurse for telling us "we didn't even need to come in". She's not a dr, she had NO idea of what was going on with my daughter. I'm glad I trusted my instincts on that one. Sometimes people, including drs, think they know best and they JUST DON'T LISTEN to us moms.

I'm so glad your daughter is better and I will continue to pray for her!!

Michelle Whitlow said...

Sorry, I meant to say "my daughter came down with the flu/pneumonia" Typing too fast!!

Ruth said...

So glad to hear that your precious daughter is feeling better. What a heartbreaking time for any mom to have to go through. God is by your side always. Your story proves that.

I think some action does need to be taken against this dr. Just because he saw 15 kids with a virus doesn't mean that he can ignore your daughter's symptoms. This should be reported to the licensing board in your state. You couldn't have been any clearer with your concerns and the symptoms could not have been more obvious.

Praying for your family.

Unknown said...

Elise,
Of course I have been keeping "tabs" on Lilly via Jenny. My nurse friend that I wrote to you about was certainly ticked off (to put it nicely) when I told her your and Lilly's story. But when I told her you lived in the south, she knew there was nothing she could do on her end. But...she has been keeping Lilly in her prayers as well. GOD IS AMAZING!!! Love to you and your family! Cory is a great dad as well...
~TinaW

Kimberly said...

I am new to your blog. I am glad your daughter is feeling better and gaining weight again! I was thinking is there something us BLOGGERS can do? Maybe we could send her a card!?

The Runyans said...

do you live in tn? i know your profile says south!

i'm praying for your family!

Becky said...

found your blog from Jessica and wanted to say that I am also praying for you and your sweet Lilly.

Caroline said...

I somehow stumbled upon your blog...and read all about your lovely Lilly.

Please knowI am lifting her up in prayer.

God bless you and your family during this time.

Anonymous said...

That photo of her in the hospital is pretty bad!..and I totally feel your pain on medical professionals. I cant say that I have walked in your shoes, but hopefully as in my experience, things will only improve from here on out. You hang in there, I know that you can handle this! Even tho we are far away, I still care! love you and yours, misty

Twice as Nice said...

Just happened to stumble to your blog. Years ago my niece came to live with me and my hubby (we didn't have a child at that time) because her mother passed away. Anyway we only had her for about 2 months when we discovered she was a diabetic (she just turned 7) and she too was very thirsty, eating a ton, losing weight. When we took her to the doctor her blood sugars wouldn't even register she was so high. We had to go to a hospital about an hour and a half away and they taught us how to give her shots (I hated that part) and her new diet. It is a lot to take in.
There is a lot to learn. Do remember being more active or being in the sun swimming can change the blood sugars. They have come a long way. She's a very lucky little girl. Will keep you in my prayers.

dmvoccola said...

I, too, have offered up a prayer for Lilly and your family. I am so sorry that your voice was not heard by the medical professionals. I have always believed that moms just know and should be listened to when it comes to their children! Thank God that Lilly is recovering and your family's faith and testimony give Him glory!

Cheryl B. said...

just letting you know that I'm still prayin!!!!

Tristan said...

that is so scary.

praying for your sweet girl, and that your all adjusting well!

Tara said...

Elise I am so glad Lilly is doing better! The pictures brought me to tears and made me mad and brought back too many incidences like that with my mom. Praise God for his Protection of Lilly!

Kelli Bohanan said...

I found your blog from another blog I follow. Our family has several Type 1 and Type 2 diabetics. We will all be praying for your family. God is with your family. KelliB

Georgia Girl said...

Just wanted to let you know I still have you all on my prayer list at church! I hope Lily is doing better and adjusting to her diabetes.

Shannan Martin said...

I'm so glad you told me about this, my friend. I know that there is NOTHING scarier. It is mind-boggling that things can get so scary so quickly. I did not include this in my post, but 2 significant symptoms that C had had for a while were also waved off by the pediatrician on 2 separate occasions. Again, I'm just thanking the Lord that our hope is in Him and not in doctors. I'm so thankful that you got an answer quickly for your precious girl and that she is doing so much better already. Just like you said - this is your new normal. It will be a regular part of your life, but it will be ok, because you'll still have her. :)

Yeshua Hineni said...

Hi sweetie! I saw your post through the Tip Junkie blog, and I had to come and read, when I saw ya'll needed prayer.
I have celiac disease and my first thought was type 1 diabetes and the link to celiac, as both run in my family.
You might want to look into it as the incidence is 1 in 20... and lactose, lactase or casein intolerances tend to go hand in hand (you'd mentioned the milk) -- IF one has celiac, you can have an aversion to milk until your gut heals... or forever. Mileage varies.

http://www.glutenfreeworks.com/symptomology.php
http://www.diabetes.org/living-with-diabetes/complications/mens-health/serious-health-implications/celiac-disease.html

I hope you all get into some support groups for your little one. Give her a hug for us all. I hate seeing a little one so sick.

Unknown said...

I am so glad I read this post, I will without a doubt be praying for your little lilly! what a sweetie! This was very hard to read, and the pics. of her so so thin were major tear jerkers! I am so thrilled however, to hear that she has gained some weight and is eating. God is good! Doctor's aren't always great at what they do. Mom and dad's intuition is always the best! I will be putting Lilly's button on my blog as well. HUGS HUGS, Jenn

Em said...

Hey girlie... wow, your photos really put into perspective what was going on with Lilly. My heart is breaking for her! I can't believe how skinny she got! I read 28lbs and thought nothing of it because I am so out of the loop of what a "normal" child should weigh. Mine are on a high fat diet with lots of milk because they are too skinny and that was the first thing I brought up to the Dr. "isn't this going to lead to worse problems? Diabetes or high blood pressure, heart issues?" My daughter is 8 and weighs 36 pounds! All that fat and sugar pumping through that tiny body! I need to put all my faith and trust in God instead of these "earthly" doctors! Everything God does is good and I want to thank YOU and your story for helping others. I gave Jenny a couple things to send you, I really wish I had time to do more physically for you but you know what I can do every day... PRAY for you and your family! Love you sister!

Libby said...

I have been praying for your family and I am happy to hear that ya'll are doing alot better! I think that you are handling this will and you sound strong and determined!! I live in the south too. I live in Newnan Ga, south of Atlanta!

Hope that ya'll enjoy a wonderful weekend!
Libby

Cynthia said...

I found your blog by clicking one of Lilly's buttons on another site. My son was diagnosed with Type 1 diabetes nearly 3 years ago at age 10. Reading Lilly's story reminded me of those first few days. My sons BG was 1045 when we got to the hospital. I have a picture of him that looks similar to Lilly's. It is still hard to think about that day. He is doing great now and does all the things he did before diagnosis. He now has an insulin pump and he thinks that is great. Other parents of diabetics told me things would get better or easier, I know it's hard to believe, but it does. I will keep Lilly and your family in my prayers!

Yarni Gras! said...

I came over from Lori's blog. I am so glad you all figured out what was going on. Through the grace of God, she will become and healthy and vibrant little girl again. The good Lord knew what He was doing when He gave her to you.
Those photos were REALLY hard to look at. But....at the same time, I am so thankful you had the courage to share with us...because now WE can keep our eyes open with our own children.

Jen @ tatertotsandjello.com said...

Oh my goodness. I have been hoping and praying that Lilly was getting better. I had no idea how serious this was. How scary!!! And how terrible that you mentioned Diabetes to your doctor several times and he did nothing about it. Those pictures of her in the hospital made me cry. My daughter is also 5 and I can't imagine how scary that was for you! I am so glad that she is doing better. I will continue to keep you guys in my prayers!

XOXO
Jen

Heather said...

I clicked on your button from another site thinking it was something else. I was surprised to see your baby and the journey you all are making. I believe God leads us to where He wants us to go. Today He led me to you. With tears in my eyes over seeing your daughter's pictures I can't imagine how hard this is for you. I can't help but think of how I would feel just as you do helpless to make her feel better. My daughter is six also. My heart goes out to you. Your family will be at the top of my prayer list! I don't believe in coincidences, He is giving me a chance to pray for you by seeing this today. God has all of you in the palm of His hand and has not forgotten your trials!

Recycled Rita said...

I had diabetes as a child (not as bad as Lily's, I could take oral meds) But it took a long time to diagnose because I had stomach aches instead of the regular symptoms. Just let her be as normal as you can. Let her go trick or treating, just have replacements at home that are fun and new to exchange for the candy...toys and such. She will do well! She is a strong little girl!
Hugs to you all!
karen.....

Stacey @ The Blessed Nest said...

Oh, poor thing! I was teary looking at those pictures. I have had many health problems, and also have had to argue with an ER Dr. in order for him to do further tests on my baby -- turned out I was right & she needed emergency surgery. I have learned that we are our own (and our children's) best advocates. There is absolutely nothing wrong with switching doctors, you have to go where you will get the best care for your family. If I were you when picking up my child's records I would take in a copy of this post with the pictures, so that the Dr would know why you were leaving. You wouldn't have to actually say anything if you didn't want to, but maybe this would shock them so that another little child's symptoms would not be ignored by them. I'm glad that little Lilly is on the road to living a healthy, happy life! :) Many blessings to you!!
Stacey

Kristi said...

Hi there, I have just found your blog tonight! The pictures of your beautiful daughter had me in tears! But I am so glad that you found out what it was and have help now. I am not the suing type either, but I think in THIS case you should!!!
I have always been suspicious about diabetes with one of my sons. He is 9, he has never had an episode like this. But he is VERY thin, drinks and pees alot.... His twin brother is the complete opposite. So it could just be that as well. But reading your blog has brought more awareness! Your beautiful daughter and you all are in my prayers! :)

Unknown said...

Wow, I just sent a comment not sure if it posted. But i never had a chance to read this. The library certainly was not the place to do so. Lilly sure is one miracle of a little love bug! Love her, Love you & Love The Man upstairs that answered all of these prayers! <3