Getting started is always the hardest part…

Getting started is always the hardest for me (for most, right?), no matter what it is.  Writing, cleaning, cooking, just taking that first step seems so daunting and then once I do I'm off & running.  SO, with that said, I've been thinking of, planning to, brainstorming, even opening blogger to start my blog and just never started typing.  BUT, here I go...

Faith's story touches people in ways that I still don't fully understand or comprehend.  I am resolving to not let my lack of discipline keep it from being fully told.  SO, I'm going to try to make it a point to blog our highs & lows (pun fully intended ;) of managing this disease & my crazy brood of four children, four roosters (down from 10!), 3 hens, 1 dog, & 3 horses.

We'll cry, we'll laugh, I'll ramble...you know, pretty much a normal day...

If you've never read Faith's story, catch up now...

 

 

"Before Faith learned to walk she learned to sit through 8-18 finger pokes a day.

She learned to be brave through her insulin shots before she could even say the word "shot".

Most days when I give her an injection she says "tank tu" when I'm done...God love her.

Type 1 Diabetes is a war and if we don't get up and fight it every day, we'll lose."

— Sarah Wilson, Faith's mom

This is Faith's story.

Sunday, Nov. 15, 2009, Faith, our 9-month-old daughter, woke us up at about 4:45 a.m. fussing.  I went to get her out of bed and she was soaked.  I just thought it was a leaky diaper; so, I cleaned her up, got her a bottle, and got her back to sleep.

I went to bed and she woke me up again at about 7:45.  This time she had spit up her bottle, but she didn't look sick or anything, didn't have fever and wasn't particularly fussy, so I thought maybe her bottle hadn't settled well.  I gave her another bath and set about getting everyone ready for church.  We put her in the church nursery as usual, but when I picked her up, the workers said she had been very fussy.  She didn't look very good either and she felt warm.

The older kids had stayed the night with my husband's parents, so after church, we had to drive to pick them up.  Before we could get home, Faith had started throwing up everywhere.  I mean, everywhere.  It was on the back glass, on all the kids, even in the floorboard behind her.  We pulled over and I cleaned her up as best I could.  We hurried home.  She threw up a couple more times by the time we got there.  We couldn't get her to hold down anything.  I called the nurse on call and talked to her about it.  She told me to give her fluids in a medicine dropper.  I did that, but Faith couldn't even hold that down.  She was running a 101.4 fever.  I was very concerned

Chuck, my husband, took the older 3 to church that night. I took Faith to the ER.  In the ER they concluded she had the H1N1 flu and an ear infection.  They sent us home with Tamiflu, antibiotics and Zofran for nausea.  We went home.  She seemed a little better Monday and slept most of the day.  Tuesday morning she seemed OK, but the more the day went on, the more concerned I became.

I couldn't tell you exactly what it was at first that made me think she was worse.  I just felt uneasy.  Sometime around lunch time, she started throwing up again (but only once), which concerned me.  I started thinking maybe I needed to call the doctor.  She started breathing heavy, but I kept reasoning -- she has the flu, of course she's going to look sick.

I battled with myself over whether or not to call the doctor for a couple of hours.  It seems we are at the doctor every other day.  I kept telling myself that they would think I am crazy if I called them and said, "Um my baby that has the flu, well, she looks sick."  I called and talked to the nurse (the first of many things God worked out that day, because normally you have to leave a message and wait for a call back…generally after hours).  The nurse told me it wasn't a bad idea to bring her in for a recheck so I picked the kids up from school a bit early and headed to Tyler.  Thankfully, my mom and sister were in Tyler, so I asked them to meet me at the doctor's office to pick up the older 3 kiddos.  By the time we got there, I was frantic.

When I got into the doctor's office, our pediatrician wasn't there, so I saw her nurse practitioner, Shana.  The moment she walked into the room she yelled for the nurse to bring a pulse ox (to measure oxygen in the blood and stuff.) and said Faith just didn't look good.  Faith was this very noticeable, very scary gray color and was breathing rapidly like she'd run a marathon.  However, her oxygen rate was perfect and her lungs sounded perfectly clear.  SO, Shana could easily have said "she's sick with the flu, of course she's going to look bad, but her lungs are clear and oxygen is fine so go home." THANK GOD SHE DIDN'T!

She told me to go straight to the hospital.  That if I promised to go straight there, then she would not call the ambulance (where the heck else would I go?).  She handed me papers and sent me out the door.  She told me to go straight up to the pediatric floor and not to stop at admissions.

When I got to the hospital, the nurse met me in the hallway.  By this time, I'm crying and scared to death.  Now, this is not my first rodeo...I have four children.  I've been through the flu and hospital visits NUMEROUS TIMES, but something just felt WAY different about this time.  I was terrified...and alone. I don't usually cry, but I just couldn't contain myself that day.

They walked us to our room and the first thing I saw sitting in the windowsill was the most beautiful sight I may have ever seen -- a pumpkin decorated as Horton from Dr Seuss' Horton Hears a Who.  The reason this is beautiful to me is that one of my very close friends works at the hospital and had decorated that pumpkin.  There it was in this room.  I don't know why it was so comforting to me, but it was.  It made me laugh.  It sort of snapped me out of it.  This was so totally God working to comfort me. When I texted my friend Nicole, who decorated it, I wrote, "I love you, wanna know why?" as the caption and sent her a picture of the pumpkin. Almost immediately, my phone started ringing, which I thought was weird because we usually just text and she was at work, but I answered, and Nicole asked me where I had gotten that picture.  I told her it was in Faith's room and she told me that they'd been looking for that pumpkin to throw away and hadn't been able to find it!  Keep in mind this pumpkin had been at the hospital for more than a month!  They had decorated them weeks before Halloween and this was November 17th!  It was perfectly intact and not rotting at all.  This may seem like a silly insignificant thing, but it wasn't to me.  It was just what I needed at that moment to comfort me and lighten the mood.  I didn't feel alone somehow because this pumpkin, that my friend had decorated, was in the room waiting on me.

They whisked us off to another room where they attempted to get an IV started and couldn't.  So, they tried to catheterize Faith, but for some reason it didn't work.  She ended up peeing all over three nurses -- their faces, their scrubs – but, thankfully, one of them had the presence of mind to grab a little vial and catch some of it.  They caught the tiniest amount and decided to send it to the lab to see if they could do anything with it.  I can't stress to you enough how important this was!  This turned out to be another miracle, but I'll get to more about that later.

So they're trying to start an IV because Faith is severely dehydrated at this point.  They try for 50 minutes and can't get one started.  I finally said, "Ok, enough.  Get someone else."  It was time for a shift change, so they sent us back to our room (where Horton was waiting, LOL).  When the next set of nurses were on, they took us back and tried to start the IV again, for an hour.

This time I requested they bring a NICU nurse or the Flight for Life team in to try.  The Flight team came, and tried.  They couldn't get it either!  Poor baby Faith was SO upset and screaming her head off, so we kept giving her Pedialyte bottles and pacifiers dipped in SUGAR water to somehow console her.  (OMG!  Now that we know she has diabetes, I shudder every time I think about this.)  By this time, Faith had downed around 30 ounces of Pedialyte (which is now a red flag, but wasn't at the time.  We just thought she was making up for lost time).  They sent us back to our room and said they were going to call the doctor and see if they'd call off the IV since she'd drunk so much Pedialyte and was keeping it down.

So, remember the nurse having the presence of mind to grab a vial and catch the urine that was going everywhere?  Praise God for her!  I hope she realizes that God used her that day.  (I have since told her...)  That teensy bit of urine is how we ended up finding out that Faith has diabetes.

By this time, Chuck is with me at the hospital.  The nurse came in and says they've gotten the urine results and they don't look good.  She said Faith's glucose levels were in the thousands and her ketones were above 150.  This meant absolutely nothing to me at the time, so I asked, "Ok, what is a good ketone number?" and she said "Um, 0..."  (For those of you that don't know, her glucose levels should be between 80 and 120!)  I still was clueless what this all meant, so I asked her, and she said, "Well, if the test results are correct, it means diabetes.  I don't want to concern you just yet, but we definitely need to get an IV started and run more tests.  We'll go get the room ready and be back to get you in just a few minutes."  Oddly, this didn't concern me.  I just knew she had to be wrong.  I turned to Chuck when she left the room and said, "No, that can't be right.  She just has the flu.  Call your mom and have her get online and research what could cause these glucose and ketones levels BESIDES diabetes.  I just know it's not diabetes!"

Now, Faith hadn't been sleeping well since she'd gotten sick, so I was exhausted.  Chuck and I decided to take shifts.  I took the first shift sleeping so that I could be up with her later, since Chuck had to go to work the next day.  So, when they came to get her for her IV he took her, and I stayed behind to rest.  I quickly fell asleep, and apparently I died, because this was all happening around 8 p.m. and the nurse came to wake me up at around 2 a.m.!  I looked up and realized Chuck and Faith weren't in the room and was immediately brought back to reality.  I looked at her (Nurse Barbara...I'll never forget their names.)  with a look that must've expressed exactly what I was thinking and feeling because she just looked at me with this sad expression and nodded saying, "Yes.  Come with me.  It's not good and we moved her to a bigger room."  My mind was racing…Is she alive?  Why did they let me sleep so long?  Has it taken them this long to get her IV started?  I just remember being so afraid and confused.  That walk down the hall took SO long.

I walk into this dimly lit room at least twice the size of the one we'd been in and find my baby is laying in a hospital bed (the "cage" as we affectionately call it) with an IV in her head and one in her hand.  My husband is crying. There is a doctor I've never seen before.  My heart sank.  I was suddenly so angry at Chuck.  "Why didn't you wake me?" is all I remember saying before Dr. Casas looked me in the eyes and told me "Faith is very sick.  She has Type 1 Diabetes and is in severe Diabetic Ketoacidosis."

I was so shocked and confused.  First of all, I didn't know what that meant.  I knew of diabetes, but only Type 2, which I associated with old people.  Trust me, Type 1 is different -- This Ain't Your Grandma's Diabetes!

This next part is such a blur to me.  When I replay it in my mind, it is like one of those dream sequences in movies that jump around and have that haze around them.  I remember putting my hand over my mouth and apologizing to Dr. Casas for crying and I remember him telling me that I could hit him if I needed to.  He told us that she was on an IV drip to bring her sugars down and clear the ketones.  I remember that as soon as he left the room, all I could do was "yell" (quietly) at Chuck for not waking me up...this was irrational, but I was in shock.  He told me that he knew I was exhausted and thought it better to let me rest until they knew something for sure.  He said he knew I must have been tired, because when Dr. Rogers, the doctor on call that night, had come in the room to tell us they were fairly certain that she had diabetes and that he had called Dr. Casas in, I just slept right through it.  I remember calling my good friend, Kristi, to tell her...and I distinctly remember not worrying that I would wake her.  That is a sign of a true friend.  I just knew that she would get up and take my call.

Also, I remember crying and crying and searching my brain for what I did to cause this.  I was just sure that some negligence on my part was to blame.  (I've since learned that there was nothing I could have done to prevent this from happening. Type 1 Diabetes is a result of genetic factors already in place. Some virus or unknown environmental factor triggers the onset of the disease.) Dr Casas gave us a few moments and came back in to tell us that he was staying at the hospital with us that night (God Bless that man!!).  He said that they would be in every hour to check her sugars and adjust her insulin.  He told us that she was very, very sick, but that he thought she would be OK now that she was on the insulin.  He told us that in a few more hours she would have likely died…Even now that makes me sick to my stomach.  Had I continued to dismiss that intuition--that whisper from the Holy Spirit-- that something was wrong, I'd have likely found her dead in her bed the next day.  Wow!  Moms, LISTEN to that still small voice!

I remember that after we calmed down a bit, I walked out into the hallway and asked the nurse to wake me every hour when she checked Faith to tell me what her numbers were.  I also remember that she didn't have to wake me once.  A few minutes later, I realized that Horton wasn't with us, so I walked back out into the hall, and there was a different nurse standing there.  I looked at her and said, "I need Horton.  Can I go get Horton?"  This makes me laugh to this day.  This woman probably thought I had snapped...LOL! She just looked at me with this puzzled expression on her face and said, "Um, what?"  I was too drained to really see the humor in this until the next day, so I just flatly replied, "The pumpkin that was in my room, I want it."  She said, "Um, OK," and led me down the hall to our previous room.  I tried to explain why it was important to me, but I'm sure I was making no sense. She didn't seem to get it.  She just looked at me as if to say, "OK, crazy lady, go back to your room."  So, I did and I lugged the pumpkin elephant sign from God back with me.

The next morning, Dr. Casas asked me if I felt up to visitors.  Let me interject here that 1. This is an illustration of what a great doctor he is.  He was concerned about us emotionally, as well as Faith, physically.  He really made us feel like he cared.  He referred to her as Faith every single time, even though her first name is Elizabeth and that's what shows up on her medical records most of the time, and remembered our other children's names.  We really thank God for bringing him into our lives.  2. This next part is one of a million miracles that God performed that week, and one of the many reasons I know He has a plan in this.  Dr. Casas told me that he was looking over his schedule for that day and saw that one of his appointments was a 19 -year-old boy that was diagnosed with Type 1 at 16 months old.  Faith was diagnosed at 9 months old.

Being diagnosed at such a young age is very, very rare, and presents more challenges than in older children, so he thought it would be good for me to meet someone who had been down the road that I was now on.  He also told me that this young man's mom and some other ladies were starting a Type 1 foundation, and he thought they'd like to reach out to me.  The very fact that they were scheduled to come in that day was a miracle.  They had been scheduled to come in the previous week, but had to reschedule.

A few hours later in walked one of the many angels I met that week.  Susie and her son, Jeremy, walked in to my life and they were definitely a Godsend!  Seeing Jeremy was huge for me.  I really had no idea what a Type 1 child looked like.  To see that he was a great looking, articulate kid who, if you ran into him on the street, you would never know had fought this battle all his life was SO encouraging to me!  ESPECIALLY at a time when my baby girl was laying in a hospital bed unable to even lift her head.

Susie stayed with me for a bit, and we talked and cried and prayed.  She also told me that Dr. Rogers "just so happened" to be the same doctor on call the night Jeremy was diagnosed 18 years earlier!  It gave me chills to learn how God had orchestrated all this.  I don't know if she'll ever know what her visit meant to me, but I love Susie like I've known her my whole life.

Later in the morning Dr. Steeger, our pediatrician, came in just as shocked as we were that Faith had been diagnosed with this disease at such a young age. She was so supportive. I was so afraid and so down on myself. I felt like I had done something to cause this to happen to Faith, and like I was too much of a flake to handle this. I have to be one of the most disorganized, forgetful people on the planet. I just couldn't see how I was going to be able to manage such a time and energy intensive disease. Some days I still don't, and every fear that I had about me forgetting or losing something has happened at least once since we've been home, but we've recovered, and for the most part, have managed to stay on top of everything. When I expressed my fears to her, she was so encouraging. She reiterated that my bringing Faith in, and Shana sending us to the hospital, had truly saved Faith's life. Her support during this difficult and terrifying time meant the world to me. Shana came to visit later, she said she couldn't believe it when she'd heard the news. We hugged and cried for a bit. How do you thank someone who saved your baby's life? I'm still trying to figure that one out.

My dad, Preacher, and sister came to see me.  Dad ended up staying most of the day.  I was glad, because I didn't want to be alone.  Chuck had gotten up that morning and gone to work.  That seems so weird now, but I think we were just in shock.  When you don't know what to do, you do what you know, I guess.  The rest of the day was fairly uneventful

The next day another angel walked into our room.  Margie and her son, Jake, (another Type 1 family and executive director of Tyler Type One) came to visit and encourage us.  They brought us a Blessing Basket from Tyler Type One. It contained good snacks and other survival items that we would need to get through the next few weeks. It proved to be invaluable, as I would have never thought to buy the glucose gel that they included, but ended up needing several times.  Again, seeing Jake and how bright and vibrant he was, despite having this disease, was SO comforting to me.  Margie has become a close friend that I love dearly.  I cannot yet say that I am thankful for diabetes, but I am SO thankful for the people that this disease has brought into our lives.

Managing this disease is a constant battle.  It never rests.  The word that we, my Tyler Type One family of moms, have all landed on is relentless. This disease is relentless!  There is no "today we're going to take a day off from diabetes and just relax."  No, "tomorrow will be better."  Until there's a cure, we don't really ever know what tomorrow holds or what the next hour holds for that matter.

We check Faith's blood 10 to 15 times on a good day, more if she's sick.  She gets around 8 shots a day.  We check her during the night, any time she's fussy or sleepy, and anytime she is hungry.  Her tiny fingers are so poked up. Most days she handles it like a trooper, but she does have what we call our "We Hate Diabetes" days where she just can't take it.  These days she will just fall apart crying anytime she sees me reach for any of her paraphernalia. Most days, when I give her an injection, she says, "tank tu," when I'm done.  God love her. On the outside, she looks perfectly normal and healthy, but inside a battle rages 24 hours a day.  The inability to see it from the outside leads to a lot of "What is the big deal?" and "She'll be fine, I'm sure she'll grow out of it" comments that I'm sure are not meant to hurt, but do. Before she learned to walk, she learned to sit through 8-18 finger pokes a day.  She learned to be brave through her insulin shots before she could even say the word "shot."

Without a cure she will never remember a single day without a finger poke.  Think about that!  She'll NEVER have a single day off from counting carbs or checking her blood sugar -- not her first date, her graduation, wedding day, or the day her children are born --not one single day off.

She will not grow out of it and we are not lucky we caught it this early.  We caught it this early because she got it this early! It is a nightmare to manage at this age. Everything affects it.  When she's teething and doesn't want to eat, her blood sugars drop to dangerous levels.  When she wants to eat like a normal infant/toddler and graze all day she can't.  When she learned to walk, and thus her activity level increased, she ran low a lot.  SO many things affect it.  It is so rare for someone to be diagnosed at this age that they don't even make insulin for her.  Insulin has to be diluted specially at the hospital so that it is possible to draw up the correct amount in a syringe, which we also have to special order.  When she is sick and doesn't have an appetite, I can't explain to her that she has to eat.

It's a war, and if we don't get up and fight it every day, we'll lose.