Wednesday, August 10, 2016

One Drop is All it Takes

I looked at Whitley in the dark hours of the night on July 26, 2004 and said, "I think we need to go to the ER."  Knowing how terrified I was of needles, Whitley gently said to me, "Shelly, if we go there you know what they will do, don't you?"  I responded, "Don't you think he needs an I.V.?"  No normal parent wants their precious 3 year old to get an I.V., but we both knew it's what Isaac needed.  I don't remember exactly what time we got there but it was probably around 2 in the morning and our son was no longer holding down water.  We told the doctor about some symptoms Isaac had days before he started vomiting.  At first Isaac was thirsty a lot and then that turned into him even refusing food and only wanting to drink.  We told him that Isaac was potty-trained before we left Texas, but now couldn't make it to the bathroom and was having to wear diapers again. We even told him that he was soaking through his diapers at night and we were having to change his sheets.  We told him that after a couple days of that we were outside in the heat and had given him gatorade that he almost immediately vomited.  That was the first time he vomitted and now it wouldn't stop.  After we relayed what had happened over the last several days, the doctor left the room and the nurse began rubber banding all of our child's limbs, hunting for a vein he thought he could stick successfully.  He kept muttering about how dehydrated Isaac was.  I remember him saying, "Once we get the IV in we will do some blood tests to find out what is going on," but his eyes were terrified and that was making me nervous!!  I could tell that he did not want to stick our little boy.  Isaac wasn't making his job any easier because any time the nurse even touched him, Isaac would let out a blood-curdling scream.  It was really loud in there!  All of a sudden the nurse said, "I'm going to go call our OB nurse.  They stick these little guys all the time."  I was relieved and thought to myself, "Yes! You go do that!"  As he stepped out of the room, though, there was a conversation we heard between the doctor and the nurse.  The doctor had assumed from all of the screaming that the IV had been done.  When he found out that this ER nurse wanted to call the OB nurse he said, "Well... wait...  Has he thrown up since he's been here?"  "No, not since we gave him the suppository."  "Well, if you can get him to consume [X amount] of Pedialyte, we will just let him go home."  I'm not sure what the backstory was here.  Sometimes I think he just didn't want to make a life altering diagnosis at dark:30 of the morning.  We left with no i.v. and no urinalysis or blood tests.  As I looked down at the blue sheet of paper that the doctor had written the diagnosis of "stomach virus" on, I even felt dumb about mentioning the drinking and peeing.  We ended up making a series of poor decisions based on this thought, "It's a stomach virus... it'll go away."  This "virus" got stranger and stranger to us though because eventually he stopped throwing up, but was still withering away, looking more and more frail.  I called our doctor's office in Texas before we left Montana.  I told the nurse that Isaac had been very sick and had been to an ER.  I told her that they gave him suppositories to last a couple of days but that he was still very sick.  Knowing that Dr. Rakov wouldn't have any openings on the Monday after we got back, I said anyway, "I really need Isaac to be the first person Dr. Rakov sees Monday morning."  I guess she knew this phone call was serious because she just told us to come in at 9 on Monday.  There were so many hospitals we could have stopped at between Montana and home, but I remember stubbornly thinking that we had already gone to an E.R. and they didn't do anything so why should we go again?!  My feminine intuition had been put through the ringer!  Sometimes I would think that we should just stop at a hospital somewhere, maybe when we got to Texas.  Then, I would recall the ER trip, dig my heels in and think, "Home.  We just need to get him home!"  My stomach is sick right now thinking about all of this turmoil that I felt even though it was twelve years ago.

Twelve years ago today, on August 9th, 2004, we took Isaac to see his doctor.  When we took his frail body out of his car seat, we put him back on the pillow that we had been carrying him around on for the last couple of days.  He was so frail and bony that I was seriously afraid he would break.  He could no longer walk, no longer would talk, slept almost constantly, and only woke to let out pitiful screams.  He was just over 3 years old, but he weighed a frightening 19 pounds.  He was small to begin with so maybe it's just better to say he had lost 1/3 of his body weight in a week and a half.  By the time we were sitting there in Isaac's doctor's presence, we had no eloquent descriptive words to say about what had been going on.  All I could think was, "Please, FIX him!"  Every time the doctor would touch him on the abdomen Isaac would scream, so he wrote orders for an x-ray of his stomach, a sonogram of his appendix, a urinalysis, and Isaac had the "famous" blood draw.  As the doctor left the room, he said a reassuring, "We will not stop until we figure out what is wrong."  We had waited a week to hear those words we needed to hear!  We went back to the clinic after we were finished with everything at the hospital.  When the doctor came into the exam room we were waiting in he said, "Mystery solved!  Isaac has Type I diabetes and we need to get him to UMC in Lubbock as soon as possible.  A non-diabetic person usually has a blood sugar number of about 100.  Your son's is 1,260."  I did not burst into tears.  In a weird sort of way those words were a huge relief!  We were so thankful to know that there was a solution.  Isaac spent 3 days in PICU as they slowly brought his blood sugar down and 6 more days in a regular room while his parents learned how to take care of him.  Those first three days were truly miraculous!!  When we took him home, it was still another couple of weeks before he could walk again and there were a lot of things that he had memorized before the age of three (words to songs, for instance) that he had to be retaught.  All in all though, his recovery was quick.

It would be several days before I could cry.  When the tears finally did come they weren't so much about the disease diagnosis itself, but for how bad my child had to get before he got what he needed.  What was heart wrenching for me as a parent was that I didn't feel like I stood up for my child the way that I should.  This is part of the reason why I try to write something every year on his diagnosis anniversary.  We may not have done the things that we should have in the days leading up to his diagnosis, but because of that we know what diabetic ketoacidosis looks like!  Sadly, there are other parents out there who have experienced loss of a child due to the same thing.  Many times those losses at the onset of type I diabetes are due to a misdiagnosis experience similar to ours.  This link is to a story we followed last summer.  Kycie's diagnosing blood sugar was lower than Isaac's.  We were not far from this being our story at all and I struggled through this family's journey a lot because I just don't understand why it wasn't ours.  These things do NOT have to happen!  If you notice any of the following symptoms all it takes is one drop:

Even though our dx story is painful to share, we share it because education is so important and we don't want any more of our loved ones to learn all of it the hard way.  Knowing the warning signs listed on this poster is a good start!  Twelve years ago I thought diabetes happened from having a poor diet and wouldn't have dreamed a three year old could get it.  Educate yourself, please, if these are your perceptions too.  This post might not be the best one for educating about why diabetes occurs but there is good information out there! has great information and for the purpose of this post, it's the only link I'll leave at this time.

Before I close, we always try to do a little something special on August 9th every year because Isaac's life was saved that day twelve years ago.  Isaac we celebrate YOU today, so I can't just leave this post only telling about the past.  You were a fighter at age three and you are still one tough kid!

The day we got Isaac's first insulin pump.

First insertion of his Continuous Glucose Monitor about 5 years ago.

The CGM helps us stop problems before they are major ones, gives us alarms when problems are occurring and lets us know more information than what a single blood test does.  I have to say this tool is so valuable at night (I'm typing this after a night of multiple low blood glucose alarms) and during/after exercise!  This information is sent to our phone and my smart watch as well.

at Texas Lions Camp this year

We are so proud of you, Isaac!

1 comment:

  1. You have done a great job with all the kids. God just gave ya'll a special boy who will be a great man because of you "digging in your heels" and taking care of him. Bless you and all your sleepless nights.