Thursday, February 28, 2008

Our Long Week in the Hospital

Well I know many of you guys already have heard but I just wanted to give an update on our week. Monday morning I took Sydney to the doctor because of some odd symptoms she had been having. After doing a urine test that showed 3+ glucose (still not sure what that means--only that we are not supposed to have any in our urine) they then did a blood sugar test and her levels were 517...normal should be between 90-120'ish'. 517 is quite high. She had stopped sleeping through the night and was waking several times to go to the bathroom. She was eating so much food. She was always hungry. She had lost weight and lost some energy. And she was drinking so much. She was always thirsty. I got mad at her for crying in Walmart because she was so thirsty and wanted water. I said she was old enough to go to the store without a sippy cup of water. When we got home she drank 3 sippy cups of water in about 10 minutes. I thought she was getting sick and made the appointment with her doctor.  I guess those are very common symptoms for Type 1 Diabetes.

Her doctor told us that Sydney has type 1 diabetes. He said that it is often confused with type 2 diabetes or insulin resistance but type 1 is different and works differently. With type 2 and insulin resistance, the body makes insulin but doesn't utilize it properly. Generally weight and poor diet has some effect on why these diseases occur. However, type 1 diabetes is usually diagnosed in children. Weight and diet did not bring on this type of diabetes. What happens is the pancreas, which makes insulin, is slowly shutting down until it no longer works. At this time there is no way to reverse it or cure it. Sydney has about 10% pancreatic function left but her doctors say w/in the next several months her pancreas will be out of commission for good. Because of this, she has to have insulin shots 6 or sometimes more times per day to give what her pancreas no longer makes. They don't know why this happens, I guess if they did they could more easily find a cure. They know genetics plays a part. They also told us that probably a year or more ago Sydney contracted a virus that triggered her antibodies to start attacking her beta cells (they are in the pancreas and help make insulin) and throughout the past year her beta cells keep dying off. These cells cannot be replaced once they are gone--this is type 1 diabetes. (At least from my limited understanding at this point)

So we have been in the hospital until today (thursday)...it has been a very long week. We have been in information overload as doctors, nurses, dieticians, diabetic specialists, pharmacists and several others have come to explain what is going on inside her body, how we can help her and how to deal emotionally and physically with this new part of our life. We have to measure her carbs at every meal and figure out how much insulin to give. For example for every 15 grams of carbs she eats, she requires 1/2 unit of insulin and if her blood sugar is high before a meal, we have to give 1/2 unit of insulin for every 100 points it is over 150. These ratios will change often as her pancreas works less and less. There is no magic number...input this much insulin and get this result. I guess it is like an educated guessing game. I am still confused on a lot of it and it is very very overwhelming. I spent most of the week crying and sydney kept telling me to "cowgirl up." She is on two different insulins--they work differently and for different amounts of time.

Some of the hardests parts have been learning how to give Syd her shots. She is only 4 and doesn't understand...I am 24 and am having a hard time understanding. It is hard to hear Sydney scream at us and try to hit us and tell us to go away or leave her alone. She doesn't understand what is going on. It really tugs at our hearts. She keeps asking when she will be better and can stop getting shots. She doesn't understand that she has to have these shots forever, it won't go away. In addition to shots and finger pricks, it is hard to hear her try and understand her disease. She told us that she won't touch anybody because she doesn't want to give them her sickness. She was so sad when she said this. She also asked if her friends will still love her because she has diabetes. One night in the hospital she really wanted some bread but her blood sugar was too high and we had to tell her no. It was hard to watch her cry and not understand why she couldn't have some bread. She kept saying that she would only eat one piece...it was a tear jerker moment. So needless to say this week has been quite the rollercoaster ride. She has had blood sugars well over 500 and then have them drop all the way down to 62 and then we have to treat her for the low blood sugar. Apparently that can be dangerous. Today before lunch her sugars were 575...she has such a small 29 lb body to have those high of sugars.

So we have all been thrown into this new experience...one that completely blind sided us. It has been really hard but I think we just need to give it time. There is so much to learn and to do--it is daunting--I guess that is why I have been such a baby this week. I keep hoping the doctor is going to call and tell us they made a mistake but since I have asked the doc this question several times and since he keeps telling me they didn't make a mistake, I guess I should quit crying and just deal with it. (easier said than done at this point.) Anyway we just wanted to update everyone on what is going on with us. If you have any questions just ask...not that I will be able to answer them...but I will try. I have added some pictures from Syd's hospital stay.

Shamae




18 comments:

Anonymous said...

Yes, very overwhelming but I'm sure you're not the only ones to go thru this. Try to find a support group. And feel blessed that even though Sydney was so sick, the doctors were able to find a cause, and that cause is a treatable cause and she will still be able to go on with her life as normal as possible.

Anonymous said...

Hey Guys
I just wanted to let you know I am thinking about you, and that is one amazing little girl you have got there so no doubt she will be fine. Plus you guys are awesome parents.
Katie

HEATHER said...

Oh this is just breaking my heart! Look how sweet and happy she looks in her pics even though she's going through all this! Poor thing just wants a piece of bread :( I can imagine how scary it is for her to poked and stuck with needles everyday. But i'm glad the doctors were able to figure out what's going on with her! Hugs!

WolfleyFamily said...

My grandfather had Type I diabetes and because of the hereditary nature of it, we were often tested for it growing up. Because they didn't have the treatments and such that they do now, he died at age 33 - but now many of them live to old age :) Greg's in public health and they actually only discovered recently (in the past year of so) that Type I diabetes is like how you tried to explain - it's triggered by an infection. In fact, they're trying to find a way to re-classify it because of the nature that it is brought on. I can't imagine how you guys are feeling and then the shots all the time. We had friends in Rexburg that had an insulin injection type monitor that just clipped to their waistband (the other end was injected in their skin) and they just had to adjust buttons to adjust insulin.... do you know at what age they'd let her do that?

KLTTX said...

Shamae - I am so sorry to hear about Sydney's diagnosis. I really hope that you can get her sugar levels under control. I can't imagine how hard it is to explain this to her. I know that Davis would be really confused by it all.

What type of symptoms was she having that drove you to the doctor in the first place?

Kelly

Michelle said...

I just want you to know that I am praying for your family. I agree that she does look so sweet, especially when she is going through so much. This is going to be a hard transition for your whole family, I hope that soon you can find your way about it.

Anonymous said...

My thoughts and prayers go out to you and your family Shamae! Even through it all, Sidney found a smile or two. Bless her heart!

~Kourtnie

Craig & Janalyn said...

Wow Shamae! What a tough week! Syd is such a sweet little girl. I know that she is brave and will do good. I will pray for you guys! I can't even imagine what a transition this is for you. I don't know all that you are feeling, but it must be so hard. Call me if you need to talk!

WolfleyFamily said...

I was telling Greg about what you've gone through this past week and I think because Chase is also 4 years old, I just kept imagining what it would be like if it was him and I was getting emotional... I just cannot imagine what roller coaster you're on....

Jen said...

*Hugs* I just want you to know that you and your family are in my thoughts and prayers. I can only imagine what you and her are going through.

TheAlbrechtSquad said...

(((((HUGS)))) and love

wendys said...

You guys will make it through this. Call me if you need anthing.

trista said...

Shamae,
OHHHH! I cried reading your blog, it is so much harder when it is your child and not you that is "sick"! I know you are an amazing mom and will get this figured out. We will pray for you and Sydney.

Jill said...

I don't really know the right words to say other than I am sorry. It definitely hurts to see your own child in such pain. I cringe seeing Easton get a couple of immunization every 2 months I can't imagine having to give her shots everyday..my brother-in-law has diabetes and I know he struggles with it and didn't find out he had it till 29..so I can't imagine a sweet little four year old like Sydney having to go through it. I'm sure this will flip your lives upside down a little bit, we will keep you in our prayers! Keep us updated, and let me take ya out to lunch or dinner and do some consoling!

Misty K said...

Ow my gosh..... I am sooo sorry. that is alot to deal with. You and Lorin are so amazing and have alot of family to help...If you ever need anything...really anything let us know. Sid is so cute, we will pray for you all. Good luck..... p.s. i cut my hair 3 weeks ago..brave hu:)

aubs33 said...

Oh my goodness! What a heartbreaking update. I know your world must be spinning right now. There are many who love you and can lift you through this. I'll keep praying for cute Sydney, you and your family. Hugs, A.

Rachel said...

Your post was so very familiar. Tristan was 16 months when he was diagnosed and I asked the same question.... any chance that you made mistake. After a while, I just had to accept it. It's horrible to have to say no to food because of blood sugar... thank goodness for the pump! :)

AjsMommy82 said...

Thanks for sharing your story! It sounds a bit like mine...my 2 1/2 year old daughter was just diagnosed 5/20/09. It's so nice to know someone has made it through the same thing!