Infusion Day 1

24 hours- the Abridged Version

12:00 Am Blood Sugar Check and vitals. 182. Coming down. T is sleeping. Working on blog knowing I should be sleeping. Fake chair bed isn't looking all that inviting.

1:30 Lay down on parental torture device(PTD) also known as chair bed. Finally drift off into semi sleep and dream about the frogs at my parent's pond keeping my Dad up. I know weird!

2:00 Blood sugar check and vitals. T sleeps through- how I don't know, but he does. 136. Much better. Drift in and out of sleep.

4:00 You guessed it- blood sugar check. 117. Leave him alone knowing that he always creeps up a bit between 4-7 am. T slept through-again!

6:00 Time for lab draw for clinical trial. Took about 6 vials of blood. Got lucky- no finger poke this time. Blood sugar 137. See, told you he goes up a bit every morning. Usually he is 120-130.

Full set vitals. T wakes up this time. We both lay back down, knowing that the next time he wakes up it will be time to start the infusion. We just have to wait for the labs to come back.

8:30 Nurse comes in to premedicate T with tylenol, benadryll and prednisone (steriod)/placebo. I wipe the drool off my cheek hoping he doesn't notice. The print imprinted on my face from the PTD is a little more conspicuous. T takes the pre-meds and orders breakfast. I attempt to become presentable and go get COFFEE.

9:00 Blood sugar check (117), carb count, insulin and T eats breakfast.

10:00 Labs are back and it's infusion time. The bags are hung and connected to the PICC line. This is really it. T is optimistic and a little apprehensive. I am a jumble of emotions and find myself holding back tears. Not really sure what to feel. Dr. Gittelman is here and we chat for awhile. I like him. So does T.

10:15 Full Set of vitals. For the first 8 hours of the infusion a full set of vitals are taken every fifteen minutes. I will spare you all posting that every fifteen minutes. T had his own exclusive nurse named Grady today. He was awesome and took great care of T. He was here like clock work and at our beck and call. Awesome.

10:45:T announces he has headache. More tylenol and ibuprofen. Blood sugar check. 266. Hhhmmm. Dr. Gittelman comes in to check on T and does full exam. More talking. I like that he completely includes me and my opinion about meds and management.

11:45 T feels "funny". Blood sugar check-346. Order lunch. Lunch arrives, carb count, insulin with correction, and eat. Headache is still there. Dr Gittelman again.

1:00 Diabetes educator comes by. She is awesome and has type 1 herself. She gets it. We REALLY like her. We chat for a long time.

2:00 Dietitian comes in. Sort of redundant but a very nice woman. We chat awhile. More tylenol, T still has headache. Still doing full vitals every fifteen minutes.

3:00 Hospital teacher comes by, T is not really feeling up to work or going to the classroom. I can see just how disappointed he is to not do homework. (I can't figure out how to write in sarcasm yet) T is feeling disappointed, starting to doubt he received thymo. We chat. I still think it is too soon to know. Blood sugar check-can't remember. It was over 300 and T can sure feel it.More ibuprofen for headache.

4:30ish T has changed. He is not quite as chipper. Flushed. Headache is increasing. Fever. Chills. Achy. Overall starting to feel pretty crappy quite suddenly. Dr. Gittelman came right in and we started going over options. Hooked T up to EKG machine and oxygen sensor as a precaution. Full physical assessment. Decided on demerol, the other option being steroids. Sugars are still in 300+ range. Decide to change insulin ratios and correct more often.

5:00 Nausea. Zofran (anti nausea drug) Going to have to postpone dinner a little while.

7:00 T is laughing hysterically and a little too loudly at America's Funniest Home Videos. Safe to say he is feeling better. Sam arrives with dinner and COFFEE. He is my hero. T checks blood sugar, 206, carb counts, insulin with correction and eats.

8:30 Dancing With the Stars and hanging out. T is feeling better but highly medicated. He will continue to receive tylenol, ibuprofen and benadryll on a rotating schedule from here on out. Text back and forth with C. I miss him and L. I am so grateful my mom is there to make this easier on them. My parents have been amazing support for our family. Not sure what we would do without them.

9:00 T's skin is hyper sensitive and feels strange to him. No rash. Change dressing on PICC line and another blood sugar check. More vitals. I shower because I am embarrassed to be in public anymore and because I want the nurses to like me- not smell me. I almost feel like a human again when finished.

10:24 First infusion officially ends. T will be closely monitored tonight. Hoping for an uneventful night. Side effects seem managed at the moment. Hoping he can get some sleep.

Blood sugar checks and corrections will happen every three hours tonight and vitals, temp, etc every hour.

Infusion starts again tomorrow morning. Todays infusion was set for 12 hours. Tomorrow he will receive the same amount in eight hours. We will take it one minute at a time. While T is feeling confident he received thymo, I am still cautiously optimistic. Honestly, sometimes I don't know what to wish for. Thanks for all the love, we can feel it.

UCSF Is a City

So here we are, Day 1 down.

Our day went something like this. 24 hour version

Finished packing and bookwork at 1 a.m. Climb in bed exhausted.

2:30 am Crazy dream that if I shared here might result in many of you no longer following my blog and possibly to stop associating with me. I will spare you the details.

3:30 am Blood sugar check. 145 Sleep.

5:30 Dog and husband snoring and I have no covers.

6:00 Why bother?! COFFEE! Got up and finished packing and food preparation.

6:30 T is up and showering.

7:00 Blood Sugar, carb count, insulin, breakfast. C up and getting ready for school and the big track meet.

8:00 COFFEE and hitting the road. Traffic.

9:25 Minor freak out in claustrophobic, scary parking garage. Driving around in garage made for mini-coopers in a suburban in circles. Realize I might have had too much coffee. Found a spot on the pink floor by #71. Accidentally go down in the elevator and should have gone up. Go up and get out of elevator and walk down some stairs to get on another elevator to go down to street level. Yes, it is designed that way and no, there are no signs. I need GPS to get out of the parking garage. T is cool and calm; me, not so much I'm but I'm pretending to be.

9:30 Bathroom and yep- you guessed it- COFFEE. 'Cause I am just not quite wound up enough.

9:45 Arrive

Follow our handy-dandy instructions perfectly through the maze of hallways to the appropriate set of elevators and up to the sixth floor. Check in with spunky woman at elevator and tell her that we are here for clinical trial. T doesn't exist in paperwork but she says that's ok- go ahead. Wind our way back through multiple hallways to the Pediatric Clinical Research Center. Check in with nurses. They know who T is and take us to our room. Cool. T is joking and making small talk with nurses. I'm feeling pretty good and kinda relieved. Weight, height, blood pressure, temp, questions. We even have a view.

10:15 Nurses realize that we didn't go to admitting. That was not on my handy-dandy instruction sheet. Apparently, they think you should just know that by osmosis or something. I don't learn that way- I learn by reading. So off to admitting. The nurses say as soon as you are done head back up here.

11:45 FINALLY done at admitting. Apparently- our room- that had all our stuff (except our food) in it "wasn't ready yet". So typical hospital. Paper work and hurry up and wait. Receive picture of C running in the pouring rain with huge grin on his face at his track meet.

12:00 Arrive at our room that is still full of our stuff that wasn't ready. Dr. Gittelman and clinical trial nurse come in for final consent form to be signed. All my "what if's" resurface. T is cool, calm and collected. T checks blood sugar 130.

1:00 Ask about ordering lunch. Told we need to wait because his orders for insulin haven't been made yet and diabetes nurse needs to go over insulin/carb ratio. Find out C's track meet had been rained out. :(

1:45 Insulin orders are now in and T can order his food. Gee thanks. Pick up phone to order food. It's dead. Pull on the cord and it ends in frayed wires. Not so convenient for ordering lunch. They put an order in for a new phone. I ask them to please order him some food. It's not like he's diabetic or anything. I know that they are coming to do the PICC line anytime and am afraid to leave to go to the truck to get food or to go to the cafeteria. Hospital law is that regardless of long you have waited to go to the bathroom, eat or shower, when you leave your kid alone for more than 2 minutes, the doctor or procedure you have been waiting for shows up.

2:00 PICC specialist arrives and off we go to a sterile room. A PICC is a long catheter that is placed in a vessel in the upper arm that extends into the vessel in the chest cavity. They use ultrasound to guide the catheter into place and x ray to confirm it is placed correctly. It is very uncomfortable. T refused pain meds and opted for a local injection. Because T is thin and his vessels healthy and strong it wasn't an easy placement. He is so awesome. He did great. Calm and collected through the whole ordeal.

2:40 I can tell by looking at him he is going low. 85, not terrible but he needs food. Get back to the room, check blood sugar, count carbs, insulin and finally- he gets to eat.

4:00 Nurses change shift and we go over everything we have been over six times- again.

5:00 T watches Batman (thanks Meri!) while I disinfect the room and then read a bit. Work on blog.

6:30 T and I go up to the Teen Lounge for a little Rock Band II on PS3. T rocked the '80's.

Order dinner. Much smoother with operating phone.

8:00 Back to the room. Blood sugar check 98, carb count, insulin, eat.

8:45 Sam arrives for a visit. I go to find some food for myself and get completely freakin' lost. For a woman who grew up in a village of 1200 people UCSF is a like a big city. Much of the hospital is under construction and being painted so many of the signs are missing. Thank goodness everyone here has been kind and helpful and not teased me to badly! Miraculously arrive back at the room and watch a little Dancing With the Stars and catch up on our day. Get picture of L in her favorite Dancing With the Stars out fit on. So cute. Text C goodnight.

10:45 Sam heads home. Blood sugar check 345. WTH?! Wash hands and recheck. 342. Hhhmmm. Highest he has been since the week we left the hospital. Either the hospital can't carb count or his sugar are reflecting his stress. I allow a half a correction to prevent an overnight low. Only meds he has had is tylenol. Any d-moms know if it can spike blood sugar?

11:30 I think I am done for the day, T is sleeping. Will check sugars at 12:30 and 2:30.

Blood draw at 6 am and pre meds of tylenol and benadryl. First infusion of thymoglobulin or placebo starts around 7 am.

Thank you everyone for you support and thoughts. I will update as I can. I can't put into words how brave I think T is for doing this. We love him so much. Thanks for following us on this journey.

It's Official-the Clinical Trial is ON!

If you had told me three months ago that I would be voluntarily signing my son up for a clinical trial, where he would receive a drug that was used for organ transplant rejection and chemotherapy I would have told you to take a flying leap from a very tall building without a parachute. I would have said "not unless hell freezes over". I would have said NEVER. Just like the time Sam wanted to live on 30 thousand-some-odd acres and take care of a bunch of wild cows (which we did) and just like when he decided that we should move to California (which we did). I am going to stop saying NEVER.

Over the years we have worked hard to teach the kids about how to stay in tune with their bodies. We have stressed how important it is to take care of themselves and have educated them to be responsible for their own health care. Doctor's and medicine don't heal people, they support the body to heal itself. We have focused on teaching them to question, research and advocate for themselves. To always trust their own instinct and follow their gut feelings.

While T was still in the hospital dealing with complications of his diagnosis with diabetes I was all ready researching. The last day of our hospital stay we were presented with clinical trials that were available for kids newly diagnosed with type 1. They presented the options to us and a lot of paperwork to read over.

Deciding to do a clinical trial is a process. T is 13 and the ultimate decision is his. This is his body and his choice. We talked it over and he was very interested, so the research and questions began. There were three separate steps to take to be included in the trial. The first was a series of blood tests, the second a test for tuberculosis and the third a Mixed Meal Tolerance Test (MMTT). The MMTT test is to help determine if T's body is still producing any insulin on it's own. T met all the criteria of the trial. The medicine must also be administered within 100 days of diagnosis.

In order for any of this to make sense you will need some background info. Type 1 diabetes is an autoimmune disease. T cells are a part of your immune system that help fight viruses, infections etc. and sometimes these cells go rogue-they don't switch "off" when they should and they attack the cells in the pancreas that produce insulin. When this happens and enough cells that produce insulin are killed, symptoms of diabetes occur. Insulin is the bridge between your cells and the sugar that they need to function. After someone is diagnosed and starts to get insulin they often have what is called a "honeymoon" period. The rogue t-cells haven't destroyed all the insulin producing islet cells yet and the pancreas still produces some insulin. Some people still have up to 40-60% of the islet cells still functioning. This makes diabetes easier to manage.

The drug used in the trial is called thymoglobulin. There will be 66 people in the United States enrolled in this trial before it ends. T will be number 23. This is a double blind placebo trial. The doctors and patients won't know if the patient is getting the medicine or a placebo. 2/3 of the participants get the medicine and 1/3 get a placebo. Thymoglobulin has been used since the 1980's and is a pretty safe medicine, however it does have side effects that make you feel like you have a bad flu. They are temporary and go away when you stop taking it. The medicine is given in the hospital over several days into a special IV called a PIC line. Thymoglobulin is being studied because scientists and doctors believe that it may "reset" those rogue t cells of the immune system and turn them "off" so they stop attacking the pancreas. Hopefully this will extend the "honeymoon" period.

Scientists and doctors recently announced that they were able to create human pancreatic islet cells that produced insulin in mice. This is a huge break through. They need to study thymoglobulin to see if it prevents the immune system from attacking these pancreatic islets cells. It won't do any good to replace the cells if the body destroys them again. The trial is designed to compare people receiving the medicine to people receiving a placebo during their honeymoon phase. The hope is that it will stop the t cells from attacking the remaining insulin producing cells, preserving them and making diabetes easier to manage.

Thymo is a safe, but serious drug. Participants who recieve the drug also get steriods and antibiotics to manage the side effects. Participants who get the placebo get identical appearing medicines that contain no active ingredients. Most participants who get thymo feel like they have the flu for the first few days of getting it and then 10-14 days later they feel like they have the flu again.

T will be admitted to UCSF on Monday at 10 am to start the trial. The decision has been agonizing at times, but I feel more comfortable with it than I ever thought I would.

Deciding to participate in this trial has been a challenging decision. Probably the most difficult one I have ever made. We have talked and researched and questioned endlessly. T has been very involved and has asked educated, poignant questions. I am hesitant to speak for him because he has had his own journey in making his decision. His reasoning for participating is sound and difficult to argue. I have "what if'ed" myself to misery on many occasions. I have always told the kids to trust their instincts and I am proud to say that he is. Deep down, I knew he would participate and that we would support him. Every time the word "NEVER" screams in my head I know it is time to check in with myself. Some of "my stuff" is coming up. When it happens it usually means that I am afraid to follow my gut instinct. Eventually, through processing, soul searching and introspection I come around and then I am all for it.

Now when the fear creeps in and the "what if's" start I always end it with "What if- it works?"

The Ride

I have been fortunate to have some wonderful mentors and advisers in my life. I have received
guidance and counsel from my amazing husband, my family, my friends, my clients that I have been honored to attend, and the occasional unknown stranger with the right comment at the right time. I believe many of my most poignant realizations about myself and life have come from none other than my children.

Our family has lived an incredible journey so far, varied and diverse. A life many are surprised at after they have met us, not knowing our history. A life I love and am fiercely proud of. Our lifestyle is unique, to say the least. Somehow everything in our life is processed and related back to either birth, because of my passion as a doula; or horses, my husband's passion as a farrier. Diabetes is no exception.

Farrier- not sure what that is? Neither is the rest of the non-equine world. Putting it very simply, he puts horseshoes on the feet of horses. A modern day blacksmith. My husband is a genius at what he does, combining science and art for the health and well being and performance of the horse. He is passionate about what he does and has a well earned reputation for his expertise. Unlike England and Europe, horsehoeing in America is unregulated and no formal education system or accreditation system exists. My husbands passion for education and advancing his skill has set him on the path to obtaining the recognition and accreditation required in England to shoe horses. The test for obtaining an Association for the Worshipful Company of Farriers is grueling and demanding. He studied for over a year and when the opportunity to take the test in America for the first time ever presented itself in a small town in Missouri, my husband signed up. He studied for months and practiced building the handmade shoes every spare moment. We worked hard as a family to support him.

Our oldest son T has always been interested in shoeing horses. The kids all go with Sam to work during the summer and breaks, traveling around meeting people and visiting with longtime clients and hanging out at the barns. Many of our clients have watched the kids grow up over the years. T and C both have several hundred dollars saved up from working with their Dad. T is especially interested and spent many hours helping Sam study and forge shoes out of straight metal bar stock.

"So, what does all of this have to do with diabetes?" you ask- hang in there with me, I am getting to it.

As a teenager obsessed with animals and horses and cowboys I started listening to country music- mostly to piss off my Dad. (It worked, he detested country music.) I must admit, my own taste has changed dramatically since then and my rebellion mostly wore off. One artist that I still love is, Chris LeDoux; more cowboy poet and storyteller than country singer, his songs have marked many poignant events in our life. Our wedding, birthdays, parties and special memories of a ranch living lifestyle left behind are fondly reminisced every time I hear his music.

Back to the test my husband spent so much time and energy studying for. I went with Sam to Missourri to support him for the exam, leaving the kids in California in the competent care of my Dad. The morning the exam started my husband was more nervous than the day we got married. Just before going in to start the exam, he got the following text message from T. An excerpt from a song by Chris Ledoux we all love. It said,

"Sit tall in the saddle, Hold your head up high
Keep your eyes fixed where the trail meets the sky
Live like you ain't afraid to die
And don't be scared, just enjoy your ride"

That verse was exactly what my husband had needed to here. It wasn't about the test, it was about the journey. When I couldn't come up with any words of wisdom, our son who was twelve at the time, provided the perfect wisdom at the perfect time.

This last week has been a rough one. Diabetes is consuming. The fear of the unknown crippling. There have been terrible events recently that prove how horrible this disease is. The grief at times has felt overwhelming. This disease and what it is capable of sit like a foreboding shadow in the back of my mind, showing itself in my weak and vulnerable moments.

We have cried, raged, grieved and cried some more over the pain this disease causes. And yet, life keeps going. We have played, laughed, loved and kept living. Diabetes takes precious time away. Time spent carb counting, weighing food, planning, logging, testing, learning, worrying, the list goes on and on. Time that just a short while ago was taken for granted. Time spent free from the weight and constant vigilance this disease demands. I won't let diabetes take one more second than it requires from us. Not. one. second. So when I can't come up with any words of wisdom and comfort, words of hope. I will take another life lesson from our son and Chris Ledoux.

"Sit tall in the saddle, Hold your head up high
Keep your eyes fixed where the trail meets the sky
Live like you ain't afraid to die
And don't be scared, just enjoy your ride"

Thank you for sticking with me on this one. I know it took a while to get there.

A Month Ago I Didn't Know...

A month ago I didn't know hardly anything about Type 1 diabetes. I didn't know that it would put our healthy, active, intelligent, amazing boy in the hospital fighting for his life a mere thirty four days before his thirteenth birthday. I didn't know how grateful I would be for a diabetes diagnosis, grateful it was something we could educate ourselves and learn to manage. Grateful that we had so much support and love from the hospital staff, our family and friends, and from other patients and their families in the ICU, who gave us insight and a perspective that made our diagnosis much easier to cope with.

I didn't know that he had every sign of diabetes for the two weeks previous to ending up in ICU. Hungry all the time, thirsty, frequent bathroom visits, less energy, leg cramps, heartburn, more stressed. Of course he's hungry- he's grown two inches in six months; of course he's thirsty-he's finally drinking water the way we have drilled into him for the last ten years; of course he's peeing a lot- he's finally drinking!; of course he's tired- remember he grew two inches in six months! The little voice in my head (my instinct, my internal wisdom, the voice I tell all my clients to never ignore) kept saying... "there is more to this... something is wrong..." Instead I scheduled an appointment for him when we got back from our trip. Three days before ICU, I even told my husband and best friend that T had signs of diabetes, but dismissed it because the idea seemed, for lack of better words, absolutely absurd. Not our family, not our son.

Two days before he became so seriously sick he took his second degree brown belt Shotokan Karate belt test and passed with flying colors. The next day he was tired. It made sense, he had worked hard. The next Monday he went to school, although he looked exhausted. We had planned on leaving that day for a business trip with the family. I picked him up from school and knew that the trip wasn't going to happen. Something was wrong. He looked gaunt, skeletal, anorexic. He said he was tired and his legs hurt. He had heartburn, and a stomach ache. He smelled strange, although it took me a while to recognize the smell. Like super ripe fruit-right before it goes bad. I attend women in labor and happen to be one of the people with a genetic ability to smell ketones. I have smelled ketones on pregnant women with diabetes and on women in labor. I didn't connect the smell to T until we were at the ER. Then it all made sense.

DKA hit T hard. Diabetic Ketone Acidosis is a condition where high blood sugars create a serious chemical imbalance of the blood. The body's pH becomes eschew; creating a host of serious potential complications, including seizures, heart rhythm issues, brain swelling, coma, and yes, sometimes death. T's blood chemistry values looked pretty bad, his doctors and nurses were shocked he wasn't in much worse shape. His body was strong and did a lot of compensating for his condition. It took three days in ICU and two and a half days on an insulin drip with constant fluid replacement changes to get him stable.

An A1C is a blood test that measures the average blood sugar in a diabetic for the last three months. T's was 14. Yep, 14. Ideal is 6.5 to 7.5 for his age. The scale doen't even go past 14. His average blood sugar had been over 400 for the last few months. "Normal" is between 80-180. At least we have lots of room for improvement!

In the meantime, we became students of diabetes. Learning, questioning, drilling educators, doctors, nurses and the occasional stranger in the cafeteria, elevator and hallways. The more I knew, the less scared and out of control I felt. The more I knew, the better I felt. The more I knew, the better we could cope and the sooner we could go home to adjust to our new normal life.

The diabetes learning curve is steep and demanding. Carb counting, blood work deciphering, short acting, medium acting and long acting insulins, blood glucose meters, insulin adjustments, syringes, insulin pens, insulin resistance, highs , lows, rescues and recoveries, honeymoon periods... the list goes on and on. Then you take all that you learn and try to apply it to a human being that is never static and always changing. Emotions, puberty, sleep patterns, food processing and hell, lately blinking seem to change everything we have just figured out.

We are home and honeymooning. T is gaining back the 15 or so pounds he lost. Insulin doses are dropping dramatically and sugar consumption is rising dramatically. Lows, lows and more lows. I am sure as soon as we figure it out-it will change!

A month ago I took for granted how mature, brave and wise our son is. I didn't know how supportive, and brave his siblings are. I didn't really know who I could depend on among my family and friends when life throws an unexpected obstacle our way. I didn't know how profoundly, we as a family have touched the lives of those we love. I didn't know how grateful I could be to the people that have supported us and loved us through this time. I didn't know the depth of worry and love we could have as parents for our children. I didn't know that a T1 diagnosis would introduce us to a whole new community of warm, loving, supportive people we never would have otherwise met. A month ago I didn't know I had room for one more cause in my life... now I do.