Cutest blog on the block

Sunday, February 20, 2011

Every party has a pooper, that's why we invited Parker's pancreas!

So here's how I picture Parker's pancreas right now....

His pancreas is like the worst checker ever at the grocery store: The checker rings up the food that Parker buys, gets the total but then he takes a lunch break, goes out back to smoke, chats with his girlfriend on the cell (maybe smokes some Mary Jane), before returning to take your money. Then, he gives you the wrong change!

We give him a specified amount of food (40-45 carbs), no insulin (because he goes too low with insulin right now in his honeymoon phase), he spikes a high after he eats and stays high for a few hours, then the pancreas appears to dump a boat load of insulin causing him to drop fast! So if you just look at his meal numbers, he seems great. If you see the sugar spikes and slow progress down...not so great. Not to mention we have to help him along by drowning him with water and running his little booty off.



I feel like his diabetes was a full time job this week.

We borrowed the DexCom 7 from my sweet friend Emily, inserted the probe Tuesday night and had pretty fabulous readings all week. They certainly got better after two days of frequent calibrating. By today we had numbers within two points of the glucometer. But Parker loved "Dexter" a little too much! He decided to bring him down to me this morning while he was beeping and dropped him from only two feet onto our tile kitchen floor and broke him. How does that happen! I have dropped my cell phone from 5 feet and it still works, but we just had to break the loaner! I wanted to cry. It was nice enough to have someone lend it to us, but now we are those bad friends who break things they borrow. I know it was an accident but man were we both sad. Parker cried because he didn't have his buddy anymore, I cried at the thought of having to tell Emily, but she was so sweet about it. I'm sure we will end up figuring out a way to get a new one soon. Parker's very own "Dexter" took absolutely no time to order. We loved the ease of use and ordered it on Wednesday and they shipped it Friday. Hopefully we can keep him in use a lot longer. The beeps were annoying the first day until I adjusted the parameters. They saved our son's life Friday night. He needed a sliding scale dose of Humalog at bedtime Friday because his sugar was 356. So, we would have checked him at 2 am but Dexter started beeping at 10:30 pm that Parker was double down low to 51! Yikes!!! We woke him up to try to eat fruit snacks and drink juice. It was hard, he was pretty darn lethargic.  Here he is showing off his site. He was super freaked out when he saw the sensor we had to insert, but once it was on...no problem!



The rest of the weekend I have seen huge spikes after meals and have been checking ketones, pumping water and exercising Parker like crazy! I need a vacation!  We did manage to have some fun, though. We went to Arbor Hills and started t-ball practice (that will have to be another blog in its self).



Our little Sweet Pea needs a shout out too. She was such a good girl all weekend while we drug her around from activity to activity.

Tuesday, February 15, 2011

3 Down, 1 To Go

So, we started with 4 shots a day when we left the hospital. Three doses of Humalog and one dose of Lantus. We are now down to one meal dose of Humalog at dinner, and it is the smallest dose you can give in a syringe. The diabetes educator thinks we will be rid of that dose in another week or so. CRAZY!!!

So, how exactly is my T1 diabetic kiddo off all his insulin almost? I have no freaking idea! The doctors say he is just REALLY honeymooning, my husband says the prayers are working, and I say who the heck knows at this point what God's plans are for my little guy. Maybe his pancreas is going to hold out a little longer, maybe we caught it so early that he still has enough function that we can remain off insulin a little while longer, maybe his prayers for healing are being answered, maybe , maybe.... I just don't know what to think.

I do know that I have awesome T1 support. My friend Emily sent us her spare DexCom Seven to try for a few weeks, complete with 2 sensors. (how nice is she because I know this stuff is expensive?)
Laura at Houston, we have a problem!!! is lending us Nate's old DexCom carry case until I buy a better one. We watched a few You-tube videos to ease Parker's nerves about getting "Dexter" inserted tonight. It eased his nerves, but dang was I nervous.  That thing has a big A**needle! We got the DexCom sensor inserted, no problem, and it is now working! I love seeing the trends. So far it was easy to insert, easy to calibrate, easy to use the menus and settings. We shall see how accurate our readings are.

Just in case you think this is me exaggerating about the big scary needle insertion, here's the videos I watched to help me.

One Happy Diabetic
Superhero's DexCom Insertion

Thursday, February 10, 2011

Hmmmm....a show and tell item for "H"

The show and tell item for tomorrow is H...  what was the first word that started with H that popped into Mommy and Daddy's head tonight?   HUMALOG!   Wow, how our minds have shifted thinking in a few weeks.   Parker thought about explaining Humalog to his classmates and opted to take Hamm instead.   Can't blame ya buddy!


Humalog

VS

Hamm


Hamm was the clear winner for the 4 year old.

Personally, I might have chosen to tell about the life-saving wonder drug, but Hamm is much more entertaining (especially when he masquerades as the Evil Doctor Porkchop)!

Tonight I decided to make a sign for our back door, just to make sure that no one in our house (namely Dada) forgets any important items when taking the kids to school in the morning.   I am pretty proud of this sign, just wish we didn't need so many things before walking out the door.

Smurfs_Color_Pictures_Stop_Sign_Smurf.jpg 
Stop!

Do you have_____ ???

Insulin

Rescue Snacks, glucagon, glucose tabs

Regular 15 CHO Snacks

Syringes, lancets, ketostrips

Glucometer

Drinks

Blankie for Avery

Back up clothes for Avery

Bags

Monday, February 7, 2011

CGM Advice Please!

Thanks for all the posts encouraging me to be bold and speak my mind with the endocrinology office. They got my email loud and clear!! They called me today and agreed to set up some one on one training with the diabetes educators to help move us along in our quest for more information, instead of making me pay for a $750 class that is all review material.  They also agreed to help us get started on the process of ordering a continuous glucose monitoring system.  My friend Emily (thanks girly!) is going to send us a Dexcom system to try, but before we order and pay for one of our own....I wanted to ask for tips.  What is your preference and why? The educator told me that the Dexcom is great because the site can remain on for 7 days but it is the only one that doesn't communicate with the pump. So, I'm wondering your thoughts. We aren't pumping yet, but plan to be within a year or so. We only need 1.0 units of insulin a day right now so the doc thinks the pump is silly until Parker needs doses 3-4 times a day. I agree. We are honeymooning so badly right now that Parker is having lows even after going 12 hours with no insulin injections and a full breakfast meal. I was also glad to see so many comments about your similar experiences with the honeymoon phase.

Bottom line, I am loving the advice and just want to see what the favorite CGM is among the DOC moms and dads. We are just beginning to research and we have to get more info on all the lines available but it would help to narrow down my search.

Also, please join me in praying for my T1 diabetic friend Jim, who just received a kidney and pancreas transplant. We have known this sweet family for a while now and we are so grateful he received a transplant so quickly. We just want to pray for peace for the donor family and that he will not reject these organs (amazing gifts from God).  Kris and Jim's Blog

Friday, February 4, 2011

This Honeymoon is No FUN!!!

Today I am super frustrated with this Honeymoon period....which is a stinky name for this phase. It sucks too much to have a nice name like that.  For those of you without T1 kiddos, the honeymoon phase is where the pancreas gets a little break because we are providing some insulin via injections, so it gives one last ditch effort at producing insulin on its own to regulate your blood sugar but does a crappy job of it. Right now it looks like his little pancreas spits out insulin at the most random, unpredictable times causing him to drop quickly. This morning I checked him at snack and his BG was 233 and within 2 hours at lunch, it had dropped to 53. I think it is officially time that I demand a continuous blood glucose monitor from our endocrinologist so we can be alerted when this is happening. Dropping that quickly not only makes Parker feel bad but is dangerous because he could become unconscious. It is critical that they work with us on becoming more aggressive in combatting these lows.

So, I guess I have to put on my mean panties and give the endocrinologist no choice but to do what we ask.  Sometimes the squeaky wheel gets the grease, and Lord knows I have been a squeaky wheel when it comes to Parker's care in the past.

THANKS so much to Laura at http://www.houstonwehaveaproblemblog.com/ for the shout out and asking the DOC community to welcome us. I was overwhelmed at the number of responses we have received from sweet parents going through the same issues. I feel so clueless when I read the veteran blogs of people who have done this longer. Our doctors are trying to limit our knowledge right now, which is quite frankly, ticking me off.  So, it is refreshing to see some advice and tips from parents who have been there.

Tuesday, February 1, 2011

Our Diagnosis Story

I have decided to join the blogging world again, but decided to discontinue the old blog and start over with a new blog, new face, and new focus. While the old blog focused on sharing the latest news about our kids and their activities, this will have a new focus, as our family has a "new normal. We are focused on a cure for diabetes, finding more information on how to best care for our little man, and how to be a "normal" family despite the challenges of trying to be an artificial pancreas for our son.

So to give you a good recap of how we got to this place I figure I should share our diagnosis story. As most of you know, Parker has struggled with gross motor skills, temperature regulation (he is my sweaty boy, even in the dead of winter), and low muscle tone throughout his childhood. These symptoms (and extreme nagging and persistence on our parts to find a cause) led to the diagnosis of a Chiari I malformation and syringomyelia on December 16, 2009. Following a routine MRI we discovered that almost 75% of Parker's spinal cord was compressed by a central tumor filled with CSF (cerebrospinal fluid) due to increased pressure on his cord by a narrowing at the base of his skull. So after a very tense Christmas holiday, full of worry and waiting, we had surgery on January 23, 2010 to decompress the hole at the base of Parker's skull, remove a portion of his C1 vertebrae, and relieve the pressure on Parker's spinal cord. Thanks to the God-given gifts of a wonderful surgeon with skilled hands and fervent prayers of many, Parker recovered beautifully and had a clean MRI this August.









We thought we had been through the worst of his struggles for sure, because what could be worse than brain/spinal cord surgery on a three year old? We would soon discover the answer.

On December 17, 2010 Jared and I flew to Florida for the wedding of his sister Maegan. While we were gone my sister mentioned that Parker had struggled with some bed-wetting.  I simply thought his routine had been disrupted or maybe she had forgotten to make him go to the bathroom before bed. He wet the bed again on Monday night so I made sure that he went to the bathroom Tuesday evening but he woke at 10:00, again at 2:30 and still wet the bed around 5:00 in the morning. I laid awake all night thinking in back to grad school and trying to think of all the causes of excessive urination... my mind kept going back to Type I diabetes. First thing in the morning on December 22, 2010 I told my Jared that I thought Parker had Type I diabetes.  Normally he would have said I was being crazy or looking at the internet too much but after our spinal cord problems he learned that my gut instincts were pretty accurate with Parker. We made an appointment with our sweet pediatrician for that afternoon and I asked Jared's mom to keep a log of how much he drank and urinated that day. After I shared our symptoms with Dr. Terry, she took a quick urine test and looked panicked and tearful as she asked whether we had family in town that could help with Avery because I would be in the hospital for several days with Parker. She confirmed my fears that Parker was diabetic and sent us straight to the Legacy Children's ER. I have learned that when your pediatrician cries when she shares news, it's because she knows how much your life is about to change. I am so thankful for the kind and compassionate women/mothers that we have had as Parker's pediatricians. They have made it easier to receive bad news.

As I drove Parker to the ER I was taken back to how I felt exactly one year before when we received the news that he would need spinal cord surgery and it felt like a million years ago. Suddenly, we were faced with a life-long challenge that would never be in our rearview mirror. 

Jared had to receive the bad news on the phone again, like the year before when I called during our terrible MRI. He quickly met us at the ER along with my dad and uncle who was in town for Christmas. At the Legacy ER they quickly reported how high his blood sugar was (it's a blur but I think it was about 411), that he had large ketones in his urine, indicating that he had been breaking down fat for energy, and was dehydrated. My first thought was, how can he be dehydrated when we have been giving him so much water? His body was using all the water to flush out the excess glucose in his blood stream. If we had limited his water intake to prevent bed-wetting we would have made him very ill, they reported. We had done a great job by giving him lots of water to help him keep from going into diabetic ketoacidosis (a life threatening condition).  Before we ever saw the doctor Parker needed lab draws and an IV. I cannot quite describe the trauma that getting labs drawn and having IV's placed has been for sweet Parker. I just know that it was so hard to watch that my uncle and dad had to turn and leave at one point to hide their own tears. It's heartbreaking to hear your son say, "I want to go home!" at the top of his lungs over and over again. He knew he was missing a Christmas party with friends at our house and he couldn't understand why he needed to be in the hospital when he felt fine.  After the labs were in we met with another very compassionate doctor who explained that we did indeed have Type I diabetes and would need to be transferred downtown to Children's Medical Center Dallas for "training" a.k.a "survival skills" before we could take Parker home.

Parker got to ride in an ambulance to CMC Dallas and greeted every nurse on the floor upon his arrival. He acted as though he owned the joint since he had been here before and remembered the lay of the land. He was not so pleased when he realized that every time someone came in his room he would need a finger stick and shot.  The first night was a little rough because he was exhausted and just didn't want to be messed with but on day two he met Nurse Ashley! This was a love affair that would go on for the next several days. She was the sweetest nurse and so good at explaining every step to Parker so he wouldn't be as afraid. She was also very compassionate with Jared and I as we cried, asked questions, freaked out about having to do this everyday, etc. Then, it was time for the diabetes educator, Aquilla to teach us how to care for Parker. We had two hours of head swimming information and practice on one another. Then we had another education class with the dietician to learn how to count carbs and plan Parker's meals. By the end of these classes we just went to the cafeteria and cried. It was overwhelming, exhausting, mind-numbing, frightening stuff to know that Parker's life was now resting in our hands. He could not live without injections four times a day and finger sticks at least 4-6 times a day. We slept a little then repeated the process the next day with a review of information and tests of our skills. Luckily, Parker was a champ at shots and finger sticks by day two. I can't imagine how hard this would have been with any other kid. Parker is so sweet, he rolls with the punches and learns to adjust so quickly. The doctor told us that it may not be so sweet once we went home and he learned that Diabetes would come home with him and not stay in the hospital. But, Dr. White underestimated our little man. He has never thrown a fit about a shot or finger stick to this day.  

It was great to get to leave the nasty, dirty hospital room and go to our nice warm comfortable beds on Christmas Eve. But we had no idea how hard it would be coming home to the bustle of the holidays. Parker's sugars sky rocketed because he got too excited, we panicked and needed to call the on-call doctors twice that weekend but they calmly reinforced what we had already learned. The holidays were not as joyful for Jared and I this year as we were grieving and felt like we were watching the world have fun while our hearts were breaking. The bright spot in all of it was watching the joy on Parker and Avery's faces. They moved on, they didn't care that we brought Diabetes home with us, they were just happy to be kids and carefree.


We didn't take pictures of his hospital stay other than him playing in the child life room. But here's a few from Christmas....you can tell he isn't too heartbroken.




We aren't grieving any more, we have moved past that phase. Now, I get a bit mad at times, but I will explain that in another blog post :) We are blessed beyond measure, grateful to God for his awesome power in revealing Parker's needs to us, and sustaining us daily.