OK- so every time I find a new D Mom blog, I always read the diagnosis story first. I don't know what it is... I'm just drawn to them. It just assures me, I guess, that I'm 'meeting' someone that really knows what we've been through, plus what we live with. Plus, I know I can relate to what they have been through too.
I read the story and feel like I've made a new friend.
So- if you are like me- Hi, new friend! here you go:
Well, hindsight is 20/20- so looking back I can see my then 14 year old daughter Jessica was having symptoms in the summer of 2009. I remember her telling me that when she had to go to the bathroom- she HAD to go, right away. I didn't think anything of it at the time. I remember I thought, 'that's kinda weird. Oh well.' She was also losing weight- just a little at this point and I thought it was just a growth spurt. I have very thin/high metabolism type people in my family and Jess had always fit that body type, so no big deal.
Fast forward to the fall- Jess started at a new school- a part cyber, part performing arts school. She now had an hour and a half long dance class twice a week- so it was normal that she started losing weight with all that exercise, right? Plus, going from homeschooling to this new school was pretty stressful, so I understood why she seemed so irritable all the time. I told her two sisters to be patient with her.
At Christmas time her brother returned from college. "Jess! You're so thin! Are you sick?' - he said as only a big brother can.. we all yelled at him and said, 'Don't say that to Jess!'
And yet, I remember I was worried about her. She had lost A LOT of weight by this point. I didn't want to ask her how much. I started watching her. Was it possible my daughter was anorexic? She really wasn't the type. After a day or two, I was convinced there was no way she was anorexic, she ate a ton all the time!
We made it through Christmas. Jess was tired. She was having trouble getting school done - she'd just stare at the computer screen. She has always been my dreamy child, so I was like: Come on, Jess! Focus! Get your work done! She complained of her back hurting all the time - it was her kidneys, but I thought it was from when she had fallen ice skating. (She did too.)
In the end of January, she woke up at 5 AM throwing up. She threw up over and over. I remember it crossing my mind - I wonder when throwing up becomes serious enough to go to the hospital?
But, in case you haven't figured it out yet, my husband and I are both very hesitant to ever think we actually need a doctor. I have very rarely taken any of my kids to the emergency room. Seriously, it just doesn't even occur to me and I tend to be an idealist that thinks everything will just work out and even though my husband is an EMT, he tends to think no one is really sick. (I know, I know, we are ridiculous!)
So, after about an hour or so of throwing up every few minutes, poor Jess was finally able to go back to sleep for a few hours. Just like anyone with a stomach bug, she spent the day on the couch, sleeping off and on and couldn't even keep toast down until later in the day.
I wasn't at all alarmed. Seemed totally normal. It was Wednesday, so I left her at home with her sister (17 yrs old) and went to our homeschool co-op. While I was there somebody told me - 'oh yeah, there is a really bad stomach bug going around - it lasts 10 days.'
So, for the next few days, I wasn't the least bit concerned that Jess stayed home from school and just melted into the couch. She slept ALL day. She still slept at night. By Saturday or so, I remember thinking - boy, you have it bad! She would sit up on the couch, blink at us, and lie back down.
But - by Saturday she was waking up every now and then and wolfing down large meals - pizza, a big cheeseburger on Sunday... and then just sleeping as much as possible.
Tuesday night this thought occurred to me for the very first time: 'Maybe Jess is too sick to tell me she is sick?' (I know - I'm really, really slow with this stuff!) I decided I should get her into the doctor 'sometime soon' to get her checked for lyme disease and mono. You know, when we got around to it.
Well, the next day - Wednesday morning February 3, 2010, dawned with an inch or two of snow on the ground. We had co-op again - it had been a week since the throwing up incident- and because of the snow, I got the call that co-op was having a 2 hour delay.
Great! I thought. Let's zip Jess over to the dr. so we can get some blood drawn and get this process started, figure out what's wrong with her. I made the appointment and we jumped in the car. On the way over Jess and I talked about how she'd been feeling. For some reason she decided to mention that she had not had her period for over a year. WHAT?? Why didn't you tell me? She said she did. I said : 'Telling me you are 'not regular' is the not the same as never having it.' I was definitely feeling just slightly alarmed at this point- and glad that we were going to the Dr.
We got to the dr. and the usual first stop at the scale. This was when my world changed. Jess stepped on the scale fully clothed with her big heavy sweatshirt she'd been wearing constantly because she was always cold- and she was 88 pounds. 5' 6''. Last time I'd seen her weighed she'd weighed 128.
I said- get off and get on again! She did. Still 88 pounds. I thought she was dying. I just smiled at her while the nurse's eyes got huge. We went in the exam room and I asked what percentile that was- and the nurse said' I'll let the dr. tell you' She didn't even want me to know what percentile she was!
The dr. came in. I don't remember everything - but Jess took off her sweatshirt and her arms were just little twigs! I remembered that her brother had teased her that he was able to close his thumb and index finger around her upper arm. Now, I could do it too.
The dr. is a bit of a panic type (esp compared to me!) and she started going on about how super dehydrated Jess was. We both remember she said - 'even your TONGUE is dehydrated!!'
She told us she was sending us for blood tests for 'a bunch of things' and she was ordering them 'stat' (I didn't even know what that meant - total NO NURSE genes in me!) She mentioned diabetes. But I figured, well, it could be lots of different things, right? She also told us to stop and get some gatorade immediately and make sure she kept drinking it. (Isn't that funny and scary? Gatorade! and she suspected diabetes! Why didn't she just say water???)
So - we headed out. Jess would say I was freaking a little at this point. I say, I was still pretty calm considering. I wasn't really thinking about what could be wrong - I was just consumed with how fragile I now knew she was. I held her arm as we walked into the lab.
Well, because I didn't know what 'stat' meant, we wasted time going to the regular lab office and not the hospital. They sent us to the hospital. Knowing the hospital could take awhile, we stopped at Wendy's first and got some lunch - Jess was starving. I wouldn't let her eat the fries because they have so much salt and she was dehydrated!
We got the blood taken and went home - both of us exhausted and ready for a nap! Jess hit the couch, but before I could even report back what had happened to Sophie (17 yr old sister) the phone rang.
It was the doctor.
Dr: 'Your daughter's blood sugar is 593. That is very high. You need to take her to Children's Hospital.'
Me: 'Oh. Can we just go to (local hospital?)
Dr: No. They would just take her in an ambulance to Children's.
Me: (thinking: ambulance??!) OK. We'll go to Children's
And then, because it is me (and my husband too) that we are talking about,
the Dr. actually said:
"Now go straight there. And go now.
Don't do any errands on the way."
I said in my very responsible voice: 'Oh, yes, of course. We are leaving now.'
I hung up and had Sophie get Wes (husband) on the phone while I simultaneously googled 'normal blood sugar' As I looked at: 80-100 I told Wes the short version.
Now we start really seeing God in this story.... my husband has the kind of job and lifestyle that he can be just about anywhere during the day. He works at our church which is located 30 minutes away, but is often off doing other things in locations up to 2 hours away. He is always busy and doing... well, when I called, he said - 'wait for me, I'm 7 minutes away' - unbelievable!!! I said, OK, I'll print out the directions. He said - No, I know the way. (He often visits people in the hospital as part of his job.)
Wow! I was already thanking God, feeling His hand in this situation that was getting kind of scary. I told Jess - told her she should bring her pillow and a blanket.
I arranged for Sophie to cover picking up her younger sister, Wes got home and we headed out.
The hospital is about an hour away. Jess was instantly asleep. Wes and I talked... can it be anything besides diabetes? We didn't know. I just remember praying and thanking God over and over and over - for the snow. The whole way there I looked out the window and almost cried - in gratitude - that it had snowed the night before. Just an inch or two - but if it had not snowed,
if it had not snowed...
I KNEW I would not have taken Jess to the Dr.- I would have just waited until we 'got around to it' later. I also would have left her at home all day with her big sister while I went to co-op (with her little sister, Kate.) Even with my very limited medical knowledge, I could imagine the possible scenario that could have happened without that snow - Jess on the couch and Sophie can't wake her up. My other daughter subjected to that scariness. Thank you Lord, that never happened. Boy, I'm such an idiot - but God does intervene ! Because I trust Him He keeps me from screwing up completely! And also Wes being so close by - thank you Lord!
So, we got to the hospital, and of course within a few minutes we were in a room, IV went in easily (I know this is not true for everyone - so I'm thankful for that now!) And we just sat there and waited. People came in and out and I'm not sure what they said - but I remember two comments in particular.
Nurse: "You know she has diabetes, right?'
Wes: 'Well, we were still waiting to hear if that was confirmed.'
Nurse:" Yeah, no - it's diabetes."
Wes: "It couldn't be anything else" (Can you say denial??? ha ha)
Nurse "No - when your blood sugar is over 600 (thanks Gatorade!) It's only diabetes."
Wes or Me: "Oh. OK."
This person then left.
Another medical person comes in later to check Jess - she apparently didn't think we were handling this... ummm... the way she expected... (we laugh about this...)
Dr: "You know this is serious, right?"
Us: "Um, yeah."
Dr,: "I mean, she could have gone into a coma. This is a critical condition."
Us (thinking- yeah.. thats why we are sitting here in the HOSPITAL.)
Us (saying: ) Yeah, thats right.
Various people came in and told us things.
vaguely remember being told it was type 1.
Thought about my childhood friend that has type 1 - haven't seen or heard from her in years
Wes said - diet can fix it, they said no.
He started googling on his phone
They told us about insulin for the rest of her life.
Somebody came in - a dr.- and said she had it too and see - she is just fine. She held up her beeper like thing (pump) and said she can do anything.
Jess was talking in a slurred voice. It took her a really long time to answer questions.
She didn't seem to care about any of this stuff. She just wanted to know when she could eat.
And how was I doing? I went to the bathroom and sat on the toilet and prayed.
I didn't ask God to take it away
I didn't ask why...
instead-
I begged God to forgive me- over and over and over
because I totally blamed myself.
I was sure I had done this to her-
letting her eat sugar, or hot dogs with nitrates, or something
I don't make her exercise.
I can't even describe how guilty I felt.
i think I asked God to help me get through it too...
I didn't tell Wes this.
I'm sharing this mostly because I think it is probably common. Of course, I know now that it wasn't and isn't my fault at all.
But Jess felt this way too - even in her DKA state- she said right away - 'don't put it on the prayer chain' (which would mean everybody we know would know.) While we were there in the emergency room, she didn't want anyone to know. She was feeling guilty too. We texted a few people, but we never put it on the whole church prayer chain. Right from the beginning, there was a need and desire for privacy. There was guilt. There was shame.
Well, we waited several hours to find out if they were going to send her to intensive care. They decided that she didn't need it, so Wes headed home to be with the other girls. He left his Bible and his laptop with me.
While we were waiting, I decided to read Jess a psalm. I was turning to psalm 62 - one of my favorites, I was thinking of the verse: 'Trust in the Lord at all times you people; pour out your heart to Him' but I paused and thought I should ask her first - 'Hey, Jess do you have a psalm you'd like me to read?'
Even in DKA, she immediately responded: 'Oh yes! Psalm 104"
'Why that psalm?'
"It's my favorite, because it is all about how good God is."
I was flabbergasted. God spoke to me volumes in that moment.
I turned to psalm 104
and soon after Jess and I were transferred to the endocrine floor and our home for the next 3 days.
We got settled and Jess finally went to sleep - in between the blood sugar checks every hour to make sure she didn't come down too fast. And I was left alone with my thoughts. I couldn't sleep!
I spent quite a long time talking to God. I'll post about that later because this is long enough already!
I also facebooked with my son and wrote an email to the family.
Well, as all you D Moms know. We spent the next few days learning.
And I have to brag on my daughter- and more importantly what I see most definitely as divine grace - as Jess just handled all of this in stride. God truly provides grace and strength for the need of the day. And only the need of today-not what I'll need tomorrow, but just enough for today.
Jess is my only child who has never minded shots.
She always would watch them do it when she was little
She has always had an interest in medical things
She called her two best friends and told them - one cried, I think. Both were upset. Jess consoled them.
I remember she said, 'Hey, at least its not something really bad. Like cancer.' One of her friends came in and spent the day with us and learned everything along with us. I have always been so grateful for that. What a good friend!!
Now, I know we didn't know yet really what our new life would be - but Jess' positive attitude has been such a blessing for her AND for me! She inspired me while we were in the hospital.
God showed me that Jess would be OK. That she could handle this.
The second night my husband and I went down to the cafeteria for dinner. He made some sort of comment - joking around - that it was my fault. He had no idea what I was still- 48 hours later- still completely a mess about. I am not the crying type. and I burst into hysterical sobs - muffled only by my frantic effort to control them and myself! He looked flabbergasted- What??
Well, this was actually the first step to me accepting that it was not my fault.
What else in the hospital? you know, it is different when your child is a teenager... I remember waiting for Jess to be out of the room when a doctor was present in order to ask if she could still have children. That was scary.
I also remember just being scared by her thinness. She looked like a refugee. I was so worried she would fall and break something. They had to use the infant blood pressure cuff on her.
Then there is also the part of me having a phobia of shots. Jess was fine, but me, not so much. I have gotten much better over the years, but up until this trip to the hospital, I had NEVER watched a needle go in- not in TV, not with any of my kids.
In fact, from a bad experience as a child, I had passed out for EVERY shot from the time I was about 7 years old until I got married. My blood test for the marriage liscence was my very first 'not passing out' experience! lol!
Having babies had helped me start to get over it, but really, to say I get queasy is an understatement. I'm embarrassed to say I have never even given blood because of it.
So, now here I was in the hospital with my uber brave daughter. And they told us it was a requirement for both the mother and father to give an injection before we were allowed to leave.
I had some serious prayer time about this! I was trusting the Lord to rescue me and just make me able. The one night at dinner the nurse said- 'So, Mom, do you want to give it a try?' I said: 'No, I need to be more rested. I'll do it in the morning.' She gave me a funny look!
Well, the nurse in the morning looked at us even stranger as I gave my first injection and the whole time Jess, my 14 year old daughter, is saying in a calm 'mommy voice:' "Good job, Mom! You're doing just fine.'
Oh, that was funny! But, you know what? As I prayed and picked up the syringe - a total peace came over me. I didn't feel nervous, I didn't feel dizzy. It was incredible. And I've been fine with it ever since.
I mean, I don't like to cause Jess pain, of course, and I know it hurts... but I can do it.
Isn't God amazing?
Before that day, I did not have the strength or fortitude to do that- no way! But before that day, I didn't need it. God provides... at just the right time.
Anyway... finally we could go home. (We had to pass an exam first!) It was Saturday night and it had been snowing all day. This was one of the infamous snowstorms of 2010 in the Northeast - we got 4 feet of snow in one storm! I remember I didn't really want to go home. It felt so safe there. What would we do if we got stuck at home in the snow and needed the Dr. for something? (And by now you know how non-medically inclined I was!) But Wes wanted to get home as soon as possible, so Saturday night he loaded us up in his pick up truck.
On the way home we got a flat tire. On the highway. In the snow.
Something was wrong with the truck and we couldn't get the spare off.
i was trying to help him and kept wondering if Jess was OK. Should we check her blood sugar??
We stopped to pick up younger sister Kate and finally got home around 10:30 at night.
Pandemonium. Jess wants her first snack. Sophie and Kate want my attention, Wes and I never ate dinner. Jess checks her sugar and she is 300 something... we have to call the endo and we haven't been home for 30 minutes. We have to find ketone strips in the mess of all the stuff they gave us. We actually have to look up in the notebook the ratio for correction and figure it out and she wants to eat too. I have to make everybody stop talking and get out paper and figure out the math and check it again because I certainly don't want to make a mistake!
it was crazy! I was sooo tired! I remember just feeling like I was pouring out. Saying, 'God please fill me up again because there is such a need to pour out love all around me!'
And I'll finally end this diagnosis story.... with a week later when I sat in a comfy chair for a few minutes and logged into the 'Children With Diabetes' forum. My brain tried to take in all of the messages on a certain thread... what are these people talking about... getting up and checking in the middle of the night FOREVER... no one ever said this at the hospital. they said 2 weeks. I've been counting down the days (nights.) What is happening here????
Oh my! And so began my real education into being a D Mom. And I'm blogging this because I've been a lurker on blogs ever since... gleaning from all of you.
