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OmniPod® Insulin Management System | User Review

UPDATE FOR UST400 CAN BE FOUND HERE.

I was asked to give a review of the OmniPod® insulin management system for a Facebook group for parents of children with type 1 diabetes. The group is looking to maintain user reviews for each of the pumps available to help those who are trying to choose one for their child. I am honored to be asked, and happy to oblige.

OmniPod
OmniPod® Insulin Management System UST200

My son, Caleb, is currently 8, was diagnosed shortly before turning 4, and has been using the OmniPod® system for nearly four years.

When we were choosing a pump, the options presented to us were Cozmo, Minimed and Animas. After reviewing each of their features, one did have a stronger appeal than the others, but for the most part I felt that the functionalities of the pumps were all very similar. We just needed to decide which nuances suited our lifestyle and personalities best.

Then a friend told us about a “new” pump – the OmniPod®.  The system includes two parts – the handheld PDM (personal diabetes manager) and the insulin pumping Pod. These two devices communicate with each other wirelessly.

The obvious differentiation is its tubelessness. We love that. Though Caleb is always attached to a Pod, he doesn’t have to carry around a larger device on his person.

  • Caleb can swim and bathe without insulin disruption.  He swims daily and at length during the summer. I don’t have to compensate for missed insulin while he swims.  Although not advised, he’s also enjoyed our hot tub with no adverse effects.
  • Caleb can play sports without insulin disruption and without worry of damaging an expensive device. At the ripe old age of 8, there is yet to be a sport where the Pod has been a concern beyond sliding into a base every once in a while.  Even then, it’s not a big concern.
  • He sleeps without worry or even real awareness that he’s wearing a pump.
  • I can separate the PDM from him.  This is extremely helpful when I’m trying to analyze data, download information, change settings or even just bolus him.  As the manager of his diabetes, it’s nice to not have to try to physically keep up with him to work the mechanics.
  • I like that the separation lets me take a small burden off of him.  If my carrying the PDM gives even the slightest illusion that diabetes is a little less part of “him” while he’s still young, I’m glad to have it.

    Swimming with the Pod
  • To communicate, the Pod and the PDM must be within a couple feet of each other, but it takes less than a second to establish the connection. For example, Caleb checks his blood sugar and administers his bolus at school before lunch in the nurse’s office. Once he hears the “beep beep” that the message of the bolus has been sent, he’s free to go to the cafeteria and leave his PDM with the nurse even while the bolus is still being delivered.
  • He has no worries when going to the bathroom.
  • The tubelessness allows for some discretion. With a Pod hidden under clothing and the PDM appearing cellphonesque, it doesn’t raise too many eyebrows. Discretion is not a major concern of mine, but as Caleb matures, he may feel differently.

Beyond the remoteness…

  • I love, love, love the auto-insertion. I have never inserted any other pump site, so they all may be just as simple, but I love that the whole change process is so easy that Caleb can even do it himself.
  • The integrated meter is great. I love the new ZipWick™ strips too – they need very little blood.
  • I also have great appreciation for the method of bolus delivery.  Bolus’ are delivered somewhat slowly – in .05 increments.  So if I made a mistake and delivered a bolus for an overstated amount (like the wrong number of carbs), you have a chance to cancel it before too much is delivered.  I find that to be a good safety feature.

    Baseball and Podding
  • We were able to acquire a backup PDM when the 2nd generation was released at a relatively low cost.  Should something ever happen to his current PDM, we will only have to start up a new Pod with the backup PDM. There’s no worry about going to shots while we wait for a PDM replacement. We have yet to need the backup though (knock wood).
  • As new generation PDMs are released, upgrading is not an overwhelming financial burden.  When the updated Pods are made available, access to them will be as convenient as getting a new shipment of supplies.

There are two things that I think people considering the OmniPod should keep in mind –

  • You cannot schedule a zero basal rate.  When Caleb first started pumping and had a significant sensitivity to insulin (less than 2U TDD per day), it would have been pretty nifty to be able to program a zero basal at certain times. The smallest basal increment is .05 units and alternating a zero and .05 rate in the wee hours of the morning, for example, would have been nice. We worked around it by setting temporary basal rates of zero and his insulin needs grew rather quickly once he started pumping precluding the need for a zero basal.  Nevertheless, I’ve always felt that would be a good improvement.
  • The IOB calculation (insulin on board) considers corrections only; it assumes that meal bolus’ are needed for carbs consumed. Because we have never known any differently, this has never been an issue. I am able to compensate easily with a little division by 2 or 4. However, I do appreciate that having the option of including meal bolus’ in the IOB calculation could be very valuable, particularly when you have become accustomed to using such a tool in your diabetes management.

Today the options have changed a little, but overall I still feel that all the major players, including OmniPod®, generally have the same functionality. Each has its specific strengths with their own appeal. The bigger decision may be whether to pump or not.  If you’ve decided that pumping is right for you, then it’s just a matter of test driving the various models available to see what bells and whistles you like most.

I believe your mind, heart and perhaps most of all, your gut will steer you correctly. Only you know what’s best for you.

You can read more about our OmniPod® story here.

For an informative post on smaller Pods and DexCom integration, visit DiabetesMine.com.

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Talking with Dr. Francine Kaufman about STAR 3

You may have heard the announcement of the results of the STAR 3 study last week. Amy of Diabetes Mine had a hot-off-the-press post about it here.

I had the opportunity to speak with Dr. Francine Kaufman of Medtronic about this study on behalf of TuDiabetes.  Please visit me there to read what she had to say.

To me this study validates what many of us already believe – that the use of sensor-augmented pump therapy leads to improved blood glucose control.  I hope the claim that this will become the standard of care is realized and the troubles that people continue to have getting insurance coverage for these devices becomes a thing of the past.

I also hope that this momentum will continue to bring us within real reach of that artifical pancreas so many parents (me included) are hoping for our kids before they head off to college.  Should it come sooner, even better!

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Super Bolus

Super Bolus by John Walsh
Super Bolus by John Walsh

First things first: this approach works for Caleb. It may or may not work for you. I am by no means suggesting that anyone should apply the following theories to their diabetes care. I am only explaining what I do for Caleb.

For weeks, Caleb’s most predictable BG of the day was pre-lunch. Without exception it had been in range. It was sensor change day and we were operating in the blind start-up period. No worries though because this time of day hadn’t posed an issue in quite a while.

It’s approaching lunch time so let’s do a finger stick. 289.

289?

Okay. Oh well. It happens. There was more fiber in his breakfast than usual and he was a little low at the postprandial check. Ah yes, hindsight is 20/20. Moving on.  Now back to this 298 and we are getting hungry for lunch.

Super bolus.

John Walsh explains it as follows: “A Super Bolus is created when some of the basal insulin delivery is stopped or partially reduced, and delivered instead as additional bolus insulin on top of a normal carb or correction bolus.”

The intent is to get glucose levels back in range quickly without inducing hypoglycemia. Here is how Caleb’s super bolus went that day:

Correction: 1.50 units, plus

Meal bolus for 50 carbs: 2.00 units, plus

Basal for the next two hours: 0.70 units, equals

Total units delivered: 4.20 units.

Lastly (this is critical) turn basal to “off” for two hours.

The change in the timing of the basal insulin makes all the difference.  Front-loading it and delivering it with the meal and correction bolus makes it act faster and all at once, thus bringing glucose levels back in range sooner.  If left as basal, the end result will be the same, but it will take more time and hyperglycemia will last longer.  The same amount of insulin is delivered when using a super bolus, it is only the timing that is different.

Back to life, start preparing lunch.

1/2 hour after superbolus: 169

Perfect. Coming down fast and lunch is ready, let’s eat. 50 carbs consumed.

1 hour after superbolus (1/2 hour after eating 50 carbs): 109

Excellent. The first time I tried this, I panicked a little at this point.  A 109 an hour after a bolus that large is cause for worry.  But his basal had been zero for an hour and he still has food in his system.  Plus his basal will be zero for another hour.

DexCom had been calibrated with that lovely 289, which we confirmed after washing hands with a 288. DexCom showed him cruising between 85 and 100 over the next hour.

2 hours after super bolus: 89.  Wonderful.

I know a bolus of that size is still hanging around in Caleb’s system beyond the 2 hour insulin duration that we use. However Caleb’s basal insulin has just now resumed.  He hasn’t received any basal or other delivery of insulin for the last two hours.  Any tail of insulin duration from that super bolus is required for his basal needs.

And it worked.  He continued to hover with a nice flat arrow through the afternoon until dinnertime when a finger stick confirmed a BG of 98.

I invite you to read more of what John Walsh has to say about using a super bolus. He suggests its use for high glycemic foods or large intakes of food in order to avoid blood glucose spikes. I haven’t tried in those situations yet, but I plan to. He also speaks of pumps giving us the option to deliver a super bolus automatically. The thought of it gives me chills.

In what ways have you used the super bolus?

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Our Happy DexCom Friends – video trifecta

As we began our CGM adventure with much trepidation, we were embraced, truly embraced, by our friends Bill and Suzanne.

I think the first time I “met” Bill was when he commented on Caleb’s low video and dubbed him a “Diabetic Ninja“.  Shortly thereafter he named Caleb “Diabetic of the Day”  in one of his own videos. Bill was one of the first people who found us through Caleb’s face on YouTube.  I remember how Caleb smiled when he saw that he was in Bill’s video.  As I’m sure was intended, it made him happy.

We have kept in touch with Bill and he and Caleb even have a friendly rivalry over their favorite baseball teams – Bill’s Red Sox v. Caleb’s Yankees.

Through Bill, we met Suzanne.  Suzanne and I tweeted a great deal about DexCom. She answered my unending questions and understood my apprehensions about putting Caleb through another skin piercing process.  She knew of Caleb and Bill’s relationship and asked if a video from Bill might help us prepare for our training.  Of course the answer was, “yes”.

So Bill and Caleb made a deal to make videos for each other.  Here’s Bill’s:

Suzanne also joined in the video encouragement:

To which Caleb responded:

Bill and Suzanne helped us so much through our CGM transition.  They went out of their way to make these videos for Caleb and sent us many heartfelt emails and tweets.  Thank you my happy diabetic friends!

“It’s all about your attitude!” Yours are fantastic, influential and even contagious!!

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“This is Caleb…” – the origin #dblogday

A little over a year after Caleb was diagnosed, when the fog had cleared, we had experienced all our “firsts” and things were more or less chugging along, my attentions shifted.  The present was under control, now what about the future?

I made my first video.  The intent was to bring attention to work being done to find a cure for type 1 diabetes.  It turned into so much more than that.  It entered me into a world I hadn’t realized existed, or at least one that I could be so much a part of.

Caleb, his face, his story, his personality, have all stretched across the world and brought me, and him, within reach of a support system that we would not otherwise have. I am so grateful for this unexpected byproduct.

This is my first work.  When I made it, I could not watch it without crying.  No matter how many times I watched it, I would choke up.  Now when I watch it, there are two things that I note: (1) how much more effective my message could have been had I made it more succinctly (yes, it’s long – sorry), and (2) how my perspective has changed.  The story is still true.  The spirit of the message still resounds.  But now I know the Caleb who has been living with diabetes for almost three years.  He has adapted.  He has flourished.  He has shown me what perseverance is.  Diabetes does not define Caleb. He just happens to be living with it.  I can watch the video now without tears because I know that Caleb.

So, as this and other videos I have made begin, This is Caleb…

At least a part of him.

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We walked.

Caleb at the JDRF walk - 10/18/09
Caleb at the JDRF walk - 10/18/09

We walked to raise diabetes awareness and funds for a cure.  We were overwhelmed by the generous response from our friends and family.  We set out with a total goal of $1,000, hoping for perhaps $500 of contributions that we would match.  You met that challenge and more than doubled it.  Thank you so much for all your support!

I’ve seen so many pictures of walk teams with blue skies, colorful t-shirts and well, sun and warmth.  Our pictures are a little different.  But that’s okay.  We walked in honor of Caleb and all PWD because we want better for them.

I’m so proud of my family.  It was pouring on us, forty degrees, strong winds whipping our faces and our path was riddled with puddles.  Lila was “bubble girl”, essentially wrapped in plastic.  Not a single complaint from anyone.  Caleb, Colin and David were the last walkers there – still trudging through the mud and puddles while others were packing their vehicles or were long gone.

At the walkThen we returned to our vehicle, took off our soaking layers and headed home, stopping for a well deserved treat of Dunkin’ Donuts on the way (I’m happy to report BG has been hovering between 80 and 100, with a nice flat arrow).

I knew we would create a memory today.  I had pictured it differently, but it’s a great memory nonetheless!

Anyone interested in making a donation to the JDRF can do so here. Or just click to see and hear the goal thermometer explode!!

IMG_3625_2

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I pumped. Once.

Lorraine, Caleb's mom, with inserted OmniPod, pumping saline.
Lorraine, Caleb's mom, with inserted OmniPod, pumping saline.

That’s me.  No, that’s not a demo Pod. That’s the real thing.

No, I do not have diabetes.

When Caleb started pumping, so did I.  I wanted to know exactly what the “virtually pain-free” insertion felt like.  I had heard it compared to a finger stick. Caleb was going to endure this for the foreseeable future.  I had been able to directly feel a finger stick, so too did I want to feel a Pod insertion.

So, shortly after Caleb’s first “click”, to which he reacted with a surprising, “Yow!”, I heard my “click”.  The trainer had filled a Pod with saline and we repeated what we had just done with Caleb.

It was no finger stick.  I had my own, “Yow!” although I kept it to myself.  It was surprising because of what I had read about the pain of insertion from the Insulet site as well as from other OmniPod users.  I have never used a traditional infusion set, so I cannot directly compare, but I have heard from those who have used both and they seem to agree that the OmniPod is less painful.  With perspective, it may indeed be more like a finger stick, but it was a definite pinch.

I recently asked Caleb to talk about what the insertion feels like.  Here is a video of his response (the “Yows” are now few and far between):

I wore the saline-infusing Pod as Caleb wore his insulin-infusing Pod.  No bolus’ for me of course.  But I slept with it, showered with it and went about my life with it.  It was not in the way.  I did forget about.  It did not seem obvious under the clothes I wore.

Then, I took it off.  I ripped it right off.  It didn’t hurt.  I took it off and threw it away. That was it.  Done.  Over.

Caleb, of course, has been attached to a Pod 24/7 for the last eight hundred and twenty-five days.  Me, only three.  I pumped.  Once.

When Caleb started pumping, so did I.

I finished.  Caleb has not.

I wish it were the other way around.

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Honeymoon schmoneymoon

IMG_1094When Caleb was diagnosed, we were told he would have to wait at least six months for an insulin pump.  We were told insurance would not cover it until we could show that injections weren’t working. I have since heard that some doctors will not prescribe a pump until a year after diagnosis because they prefer their patients not start until the honeymoon is over.

The good news is, Caleb did not have to wait to start pumping.  He had his first Pod on about 3 months after diagnosis.  The not so good news is that the first year and a half of pumping was a struggle.  Well, diabetes is always a challenge.  We still struggle. But for that first year and a half, stress and confusion were abundant.

I attribute this to a few factors:

(1) achieving tight control of a diabetic’s blood sugar is plain and simply hard and I was new at it,

(2) there is little in life that I haven’t been able to conquer that I really wanted to and for a long time I believed I could achieve consistently good BGs simply by putting in time and effort,

(3) using only fast acting insulin is a very different and more sensitive therapy than one with a longer acting insulin which seems to soak up  some of the “extra” variables, and

(4) we were managing insulin dosing with an erratic, fickle pancreas that produced some level of insulin without rhyme or reason and without notice, aka: the honeymoon.

Caleb’s honeymoon and its subsequent deterioration has never been medically tested. However, over time, I saw gradual changes in two areas.  His overall dosing would creep up and plateau and creep up and plateau.  Each time it flattened out, I would say, “Okay, the honeymoon is over”, only to be proven wrong and go through it all over again.  The other thing that changed was the reaction Caleb’s BG had to various foods. Every once in a while a food that never before posed any issue would cause erratic blood sugar readings. When first diagnosed, there were no problem foods at all.  Even pasta and pizza were just like everything else.  Pasta was the first to cause problems.  Then gradually pizza and chinese food joined the mix.  I would get the dosing down for them, only for it to change.  Then anything processed or fried started to wreak havoc.  Chicken fingers and fries became cursed foods.  Later ice cream and others.

Nights were by far the hardest with which to deal.  Between the hours of 8PM and midnight, Caleb’s insulin dosing was anyone’s guess.  We would go through periods of dinners of protein and veggies for weeks in order to figure out his basal pattern, to no avail.  His insulin needs would go up, up, up then down, down down. Up and down; high and low.  I had different spreadsheets for his basals, his carbs, his BGs.  I tracked his corrections and treatments.  I mapped his dosing and BGs by hour for any “challenging” food every time he ate it.  I even had a legend detailing various foods and their dosing “exceptions”.  I am a finance person.  I am accustomed to trends and analyses.  If I analyzed this long enough, and in enough detail, I would solve this puzzle. Or so I thought.

Then, when I thought it could not get any worse or more erratic, the bottom fell out.  Over just a few months, his basal TDD went from three units to six and then eight.  The breakfasts of oatmeal or Costco bagels that had been such friendly alternatives were now added to “the list” of foods.  All the rules had changed and things had to be relearned.  It was like going through diagnosis or pump start all over again.

Initially, each time Caleb took what I call another “step” out of the honeymoon, I would feel sad.  I would think his pancreas had completely failed and I mourned for it.  Of course, I was always wrong, and it would take another, albeit smaller, gasp for life and peter on.  We went through this so many times, that by the time it did go completely kaput, nearly two years after diagnosis, I was relieved.  With so many variables to manage when caring for someone living with diabetes, I was happy that the unpredictabilities a schizophrenic pancreas pose were no longer among them.

So perhaps, for some, it is wise to wait a year after diagnosis before pumping.  However, despite the grief I believe it posed for us, I am still pleased with our decision to start pumping quickly and would do it all over again.

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Jump Start the Pump Start

One of those times the magic works!
One of those times the magic works!

We heard how great pumping would be.  There would be so much flexibility.  He would get his childhood back.  It would be much easier.  We would be able to tailor his basal for every hour.  Dosing could be as little as .05 units – so very specific.  Life would be grand!

Caleb was diagnosed in January 2007.  With everything everyone was saying, I couldn’t get him pumping fast enough.  I learned what we needed to do and did it.  We were carb counting from the day he was diagnosed – check.  I became proficient in adjusting his doses on injections – check.  We obtained insurance coverage – check.  I read Pumping Insulin from cover to cover – check.  I read the manual, got the training – check.

Caleb’s injection therapy had him eating 3 meals and 3 snacks a day of precisely the same amount of carbs at exactly the same time every day.  It was not easy.  Giving him 3/4 of a bagel for breakfast – that was depressing.  A low carb dinner allowed for a higher carb dessert, otherwise sugar free jello.  And oh how I disliked those pre-bed snacks.  I was just not a fan of eating right before going to bed.  I didn’t like finding carbs to eat – it messed up our routine.

I was ready for the miracle that everyone was describing.  We were now entering the land of eat what you want when you want. No more schedules, no more smoke and mirrors to make 50 carbs at each and every meal seem like exactly what he wanted.  Life was going to almost be like it was.  That’s what everyone was telling us.

Well, not exactly.

The rude awakening came the very first night of pumping, April 24, 2007.  Caleb’s BGs were good all day.  I was nervous because he hadn’t had his NPH that morning, but he was cruising.

Me and three kids in the house – hubby away on business.  I slept little, if at all.  We put Caleb’s first Pod on his tush.  I reminded him all day to be careful when he went to the bathroom – pull his pants over the Pod carefully.  Then that night, I myself forgot.  He woke up having to go and I helped him and ripped that Pod right off pulling his pants up or down – I don’t remember.  I just remember I had to do my first Pod change in the middle of the night.  That was not fun.

Worse than that however, were the 300s all night that would not correct.  300s???  Other than the trip to Universal Studios and the first couple of weeks post-diagnosis, we had not seen a 300.  Egad!  Correct, correct, correct.  All night.  He came down finally by morning, but I was a wreck. What happened to the miracle of pumping? The precise tailored dosing?

We did see immediately that there indeed was flexibility in what he ate.  There was no longer the 50 carb limit.  We cheered and skipped through the “beep-beep” of bolusing him for whatever amount of carbs he was eating.  We also saw right away that he did not have to eat his meals squarely on the hour.  If he was playing outside, we didn’t have to rush in for dinner.  And, yahoo! – the snacks were no longer necessary.  Would you like a snack?  Sure, no problem – “beep beep”.  But it wasn’t required.  No more panic at school for him to eat at precisely 10AM even if he was in Music. Woo hoo!  No more waiting for highs to come down with the NPH.  If he had a high (with the exception of our late night fun) we did another “beep beep” and he corrected nicely.

But I thought this little pumping machine that could deliver insulin in .05 increments – so much more specific than the .25 units we were eyeballing with syringes – would result in near perfect BGs all the time.  Wasn’t that what everyone was saying?!?!?!?!

No.  It’s what I heard, but it’s not what they were saying.

They said there would be flexibility – check.

They said he would get his childhood back – well, for the most part, check.

They said it would be much easier – check.

They said we could refine his dosing – check.

Everything we were told was true. However, with no experience and thus no perspective, those statements are subject to interpretation.  I of course now have that perspective and find myself saying all the same things, however, I know there is more to it.  I know that pumping takes commitment.  I know that you can achieve tighter control, but with tighter control comes more risks of lows, so diligence is required.  I know that pumping is indeed a wonderful improvement to Caleb’s life, but it is not perfect.

I find this dichotomy hard to handle sometimes.  I want to celebrate the advances we have today that make things so much easier, but it gives outsiders the impression that this is no big deal.  There was a report on NBC Nightly News with Brian Williams last night which gave me the same feeling.  It spoke about how much easier and manageable diabetes is today.  It is.  But it’s still very difficult and draining and stressful and restrictive at times.  Yes, it’s better and advancements have been wonderful.  But don’t forget about us world.  We still need improvements because it is far from perfect.

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You decide

Caleb with his first Pod.
Caleb with his first Pod.

Deciding to pump was not hard.  Even deciding which pump was not hard.  What came after was a surprising challenge.

Six weeks after diagnosis, Caleb had his first endo appointment.  We covered many bases at this meeting, including insulin pumps.

I labor over the smallest decisions.  There is little that I take lightly.  I research, ponder, marinate, research a little more, think, inquire and finally decide.  When I decide, I am confident and committed.  By that point, I know what I want.

Pumping for Caleb was no different.

The nurse pulled out pump options and explained their advantages:

Animas: it allows for the smallest basal rate which is particularly important for children

Cozmore: it, in her opinion, had the best software

MiniMed: it has an integrated CGM

I sat with Caleb and my husband.  I listened to her describe the devices.  I waited for her to finish and asked, “what about the OmniPod“.

The nurse responded, “Caleb can’t use that.  He’s much too small.  It’s too big for his body.”

Perhaps what was said was not quite as surprising as the way it was said.  She implied that we were fools to consider it and further, we really had no clue what we were talking about. We were asked, “where did you hear about it”, as if it was important to know the source of our supposed misinformation.  We were “pooh-poohed”.

If you know me, you know that I am not afraid to speak my mind.  I am not afraid to go against the grain.  I am stubborn and outspoken.

If you know me, your eyebrows likely raised when you read the nurse’s response and you may have chuckled thinking something along the lines of, “this nurse has no idea who she is dealing with.”

A civil discussion ensued.  I explained that it was not too big.  That I knew of a child who was two when he began using it with success (Caleb was then four).  I had spoken to that child’s mother.  I explained that although I agreed the portion adhered to the body is bigger, the overall device that was effectively attached to the body was smaller.  She really tried to talk us out of it.  But her basis was invalid based upon what we knew.  We did not come to our conclusion without careful thought.  We could be wrong, but we wanted to at least give this a try.

With a smirk, she conceded.  I envisioned, “you’ll see”, going through her mind.

Shortly thereafter, Caleb began pumping with the OmniPod.  We dealt with various people at the endo office as he got started.  Everyone’s reaction included surprise that someone of Caleb’s age would use the OmniPod.  Nevertheless, they supported it.

Caleb has been pumping with the OmniPod for over two years.  We have never had any issues with the size of the Pod.  At the time, there was no one else at his endo’s office under the age of twelve using it.  For several of Caleb’s endo visits after he started pumping, the tables were turned.  We were being asked more questions than we were asking.  They could see that the OmniPod was a viable option for children Caleb’s age, and they wanted to learn from our experiences so they could advise other patients.

I believe Caleb’s endo felt they were providing reasonable guidance.  Because the OmniPod was relatively new at the time, there was not a lot to draw upon and I believe they simply made some assumptions about its use.  I am appreciative that they were willing to support our choice, even when they did not agree with it.

This experience solidified my understanding that I am my son’s greatest advocate.  Even including doctors and nurses with the best intentions, only I truly have his best interests in mind.

I will continue to research, which includes consultation with Caleb’s doctors.  However, I will continue to make decisions that I, and soon, that both Caleb and I have concluded are the best for him, either because of or despite his doctor’s advice.