Thursday, August 14, 2008

Ginger Saves the World


Our youngest daughter, Ginger, is nine. She is a cute little bundle of energy, on the go from morning until night, full of chatter, silliness and is the ultimate girly-girl. She is a wicked soccer player and also does gymnastics, basketball and is on the school jump rope team. I have been tired since the day she was born, just trying to halfway keep up with her. At home she plays the spoiled baby of the family to perfection, driving us all crazy with her demands (which we seldom give in to, by the way) but out in public, she is a leader, self confident and personable. She has always been incredibly healthy, having never had the need for antibiotics, no ear infections, no strep, no flu, only a mild cold once a year, maybe. She is very proud that she has never missed a day of school in four years.

Lately though, she hasn't been herself, sleeping all day, almost every day since she got home from camp just over a week ago. On Monday, after realizing that it wasn't just some kind of bug, or even mononucleosis, which we considered, I took her in to the doctor and she had blood drawn and a urine test. We were supposed to go back in a week for the results but by the time I got home from the appointment the Dr. was calling me. At first they said she had sugar in her urine and that we would have to go to a diabetes center in Syracuse the next day to have her examined there. Even though I crossed my fingers hoping that it was Type 2 Diabetes, which is somewhat more manageable than Type 1, I just knew immediately that it was Type 1. Which was confirmed when they called me again after getting the blood sugar results (845, normal is 70-150 or so), and finding ketones in the urine, and insisted that I bring her to the ER immediately. They wanted to stabilize her and then transport her to Syracuse, where there is an excellent diabetes center. Our small hospital does not have a pediatric endocrinologist and they made it clear that we would have to go elsewhere for care. I appreciated their honesty but secretly panicked about having to go to an unfamiliar city for all of this.

Doug and one of our sons had just left very early that very morning for Wyoming, along with a friend and his son. I called him, had myself a good cry and began to make some plans. I found people to take care of my other son and daughter, the house, the pets. I packed a few bags since they told me that Ginger would be admitted to the hospital and I even thought to gather relevant phone numbers. We got to the ER and Ginger received her very first IV, not easy for a scrawny little girl like her and she was very upset. Almost right away my friends showed up (many of our friends here are doctors at the local hospital and word traveled fast once I called someone for help with the kids) and every time someone came in I teared up. One friend loaned me her cell phone (mine has a bad battery) and even went out to our house to get Ginger's blanket that we had forgotten. I am so thankful for the friends we have here, I hadn't realized how many we had until this day. And even though Ginger wasn't feeling well, I could see that she enjoyed being the center of attention! She would have sashayed around the room greeting everyone if she could have.

Anyway, the ER doctor set up the transport to Syracuse and we left in an ambulance (no sirens no lights, nothing too dramatic I am afraid) and unfortunately no one told me that riding in the back of an ambulance is just like being in a boat, which would be fine except I get terrible motion sickness in boats. I didn't vomit but it was close a few times!

We arrived at the ER in Syracuse at about 10:30pm. the first thing we saw was a guy handcuffed to a gurney, surrounded by two police officers. Great. They took us to the pediatric section and I had to repeat our story to various doctors, residents and nurses about 27 times. I also heard a simplified description of diabetes about 27 times. It took us about 3 hours to be moved up a room in the pediatric ward, and I can't even begin to tell you all how exhausted I was by that time. Ginger was in much better shape than I, having slept through most of the drive and during our time in the second ER. The insulin they had started her on was helping too. Her blood sugar was gradually dropping and they tested that every hour for the rest of the night. I got about 4 hours of bad, interrupted sleep.

By morning her blood level was normal and she was starving! She had breakfast and the endocrinologist came in and we discussed the situation. Another woman from the diabetes center visited later on and gave me a tutorial on insulin, syringes, blood glucose testing, ketones and well, our new lifestyle. She was great and I sure wish I could remember more of what we talked about, it was a good thing she gave me lots of books and handouts. She told me that all of this would soon be routine and I almost believed her. She also assured me that we could not have handled this differently. I had noticed that Ginger had been drinking more water than usual over the summer, and even though I knew that was a symptom of diabetes, I had simply attributed it to the summer, soccer and her other activities. She said that even if I had brought her in at that point she probably would have been monitored but not diagnosed with diabetes and it would have had to get to this same spot anyway, before she would have been diagnosed. Even though that helped me feel better, I still feel bad about not doing something sooner. I get to keep my mom's guilt, thank you.

In the afternoon the doctor came back and said we could go home. I was terrified (not ready for this responsibility!), yet so happy to hear that. A friend drove up to get us, another friend had driven my car home from the hospital in Cooperstown, and someone had even cleaned up my kitchen. The last few days have been filled with visitors, get well gifts, phone calls and well wishers. This morning I drove to the airport to pick up Doug. He could have stayed the week out west as planned, but he felt awful being there during all of this and took a red eye back last night. I could have managed but am glad he is home anyway. Our son stayed with our friends to finish the trip and he will be home on Saturday.

Last Monday seems like it was 6 months ago and this has been the slowest week ever. I have to be careful at what time of the day I read about Type 1 Diabetes and what it entails. If I read through the books in the evening, when I am tired, I get very upset, overwhelmed and afraid of what the future may bring for Ginger and for us. If I read about it in the mornings when I am rested and more energetic, I am confident that Doug and I will handle this just like we have handled the difficulty of raising a handicapped child for the last fifteen years, as well as the illnesses and deaths of our own parents.

There is much to work out, including school, bus, sports issues, but luckily there is some time for all of that before school starts. Our other kids need to learn about all of this too, including what to do in an emergency. And I have accepted that there WILL be emergencies. She has to have four shots of insulin every day, for the time being anyway, and there will be much tinkering to get the doses right. We have to keep a kit at school, which includes an emergency injection for hypoglycemia, Ginger has to always have a few snacks with her, and she must always wear a medical alert bracelet. We have to go to Syracuse every three months, more often for the next few months, and she will soon have to have yearly eye exams as well as other tests. And did I mention how afraid I am?

But.

Ginger is awesome. She is almost back to her old self and in fact I had to tell her to stop bugging me more than a few times while we were in the car today (she NEVER stops talking in the car). I think we were both happy about that bit of normalcy! She insists on doing her own blood sugar testing already and I think we will show her how to give herself her own shots soon. She is giddy about the pink leather medical bracelet we picked out and is hounding me about when will we go shopping for a case for all of her kits. Thank goodness for girly-girls! Even though I would have preferred that Ginger had had a bug or even mono, I am incredibly thankful that she doesn't have an illness that is even worse than diabetes. I am so grateful for our friends, for Doug and for the health of all of us. I now understand why I didn't knock myself out to get more going with my art this summer and fall; I must have somehow known that I would need time. Time to spend with Ginger, learning about diabetes, how to advocate for her needs and watching over her for awhile. I am very thankful that technology had made self monitoring so much easier than it used to be and am very glad that the needles are so tiny that they seem almost comical. And on a more shallow note I am very glad that we did not have to be transported to Syracuse by helicopter. I would have had to have drawn the line there. Heh.

So even though this is a big one folks, I still feel lucky in so many ways.

25 comments:

Stacey Peterson said...

Hey Tracy - I'm so sorry you all had/have to go through this, but I'm so glad you found out when you did!! I have a cousin who ended up in a coma a couple years ago with a similar blood sugar level, which was how we found out she had diabetes She's a freshman in high school now and she's doing awesome - she's continued to play competitive soccer, and really hasn't let anything slow her down at all. Anyhow, my prayers are with you all as you adjust, but I know she's going to do great (sounds like she already is). =) Beautiful girl, btw - she looks like you!

Kesha Bruce said...

I agree she's absolutely adorable.

I'm sure you'll get the treatment details all straightened and a routine set down well before the school year starts.

I'm just glad this post had a happy ending!

Tracy said...

Thanks Stacey, so glad to hear that your cousin is ok now and so active. We have heard so many of these kinds of stories and they really help so much! And yes, she does look like me, but she is way cuter, I think! The way it should be:)

Thanks Kesha, yes, we are glad to have some time here and even though I am afraid, today is fine and I will appreciate that.

sus said...

I was wondering why things had been so quiet here this week. Oh, good luck to you and Ginger. It is so good that you caught this now, what a great mom you are! And Ginger sounds like a real trouper.

Melody said...

I'm thinking of you and Ginger........sending a never ending string of good vibes your way as always

Peter Yesis said...

What an ordeal. But you came out of it in typical Tracy style with humor and gratitude. She looks and sounds like a chip off the... (not that old) block.
Tell Ginger to start her own blog. It can begin with "The day my mom almost got sick in the back of the ambulance..." I'd love to hear her side of the story.
Take care both of you. There are many out here in blog land that are thinking of you.

Wendy said...

Tracy - Your post brought tears to my eyes. I was so sorry to read about the challenge that you, your adorable daughter Ginger and the rest of your family are now facing, and so touched by the strength, humor and positive attitude with which you are handling it. I have two good friends with Diabetes who are both now married and living wonderful lives... They both also happen to be very involved with Diabetes philanthropy and are up on the latest/best treatments, etc. Also know the Director of the NY/Northeast Region of the Diabetes Research Institute Foundation. Glad to put you in touch with any of them if you think it could be helpful and are interested... Please let me know. Wendy Gross (grateful owner of one of your beautiful paintings, which we love looking at everyday...)

Karen Jacobs said...

You guys are good people to know! I have no doubt that all will go well.
My best to you all, and hugs to Ginger!

Ann said...

I am so sorry to hear you had to go through all of this. Ginger sounds like an awesome and brave girl. You can't blame yourself. You did and are doing everything possible to keep your daughter safe. And I am sure it's your positive attitude that gives your daughter her strength.

Kim Morin Weineck said...

Wow! What a story! Wishing you all the best---

Bad Cat Studios said...

So sorry to hear about all this! My thoughts and prayers are with you and your family.

Laura said...

Tracy,

So sorry to hear about Ginger. But she'll be fine, and you'll be fine. You'll never be happy about it, but you will adjust. And hey, you're strong, and she certainly sounds strong, too.

My daughter was 6 days old when we got the news that her thyroid gland was not functioning. Which, without treatment, would mean physical and mental retardation. But the endocrinologists have kept her well and normal. She's nearly four, smart as a whip and full of energy.

Thank God for modern medicine. And the strength of mothers and families.

Hang in there, and give our best to Ginger.

n warner said...

Tracy,
Ginger is in capable hands and wise
parents...and am very sorry to hear of her scary health forecast...However it is very treatable and careful eyes
on the situation will be Ginger's saving grace....Best to you all and
whatta trouper Ginger is...Best,
Nina

Deborah Paris said...

You are right, Tracy-this is a big one but you are handling it with grace, humor and strength. I have no doubt Ginger (what a beautiful girl!) also has those traits in spades, and will be well.

bridgette said...

so sorry to hear about this Tracy. Ginger sounds like one great, brave kid! And you are a strong brave mama. Wishing her and your family all the best. So glad that everything is under control now. That must have been so scary. Sending good thoughts to you both.

Tracy said...

Boy, such nice comments! Thanks everyone, so great to hear from you all and I appreciate the good wishes. I always feel a bit like crying when I see people help others, and i am feeling that way now.

Diane Hoeptner (hep-ner) said...

Tracy, my thoughts and prayers are with you and your lovely Ginger. The shots, tests and diet stuff will get easier with time!! Hang in there!

Deborah Ross said...

Hi Tracy, I was wondering where you were all week. I'm so glad everything is under control. Tell Ginger she's a cutie ( I bet she knows that). That must have been terribly frightening for you, I can just imagine. You all are in my prayers.

Susan Carlin said...

What a story! I'm sending my wishes for good sleep and confidence that all is well and that you're surrounded by love.

Cara Dawn Romero said...

Tracy - God bless you and your daughter, dealing with a serious illness of a child is so hard - believe me, no one knows better than me. Thank the Lord it is what it is and nothing worse. You post really tugged at my heart -

Your comment about the helicopter made me smile. In April I had a massive heart attack and once stabilized I was air lifted to another town for emergency treatment. The next day when I woke up and they took me off the ventilator the first thing I said was "How did I get here?" and my husband started laughing. He said he told them they better make sure I was knocked out because if I came to on the helicopter they would have a real problem on thier hands.
I'll be keeping your sweet girl in mind - Cara

Helen Suzanne said...

Oh My! All strength be to you and yours. Think of you.

Helen S

Natalya said...

wow.... well it sounds like you chose a perfect name for your daughter! Ginger sure is refreshing... i'll keep my fingers crossed that all will be well even though i know it will be...

Sunil said...

Tracey,
I am not sure how best to express myself at this point in time for you, but I pray that all will come well (esp. the fact that you found out early)...

Steven LaRose said...

Weird.
Possibly an omen.
I met Sergi Boutenko today.
He was nine years old when he was diagnosed with Diabetes.

Read about a healthy 20 year old here:
http://www.rawfamily.com/sergei.htm

meno said...

I am so sorry to hear this.

As a mom, it just kills us to have our kids ill.

But i know you and Ginger will handle this with grace and humor.