Finding Answers

First, here's a little history to help you all understand.

August 25th we noticed loose stools with Landon.  He was otherwise totally fine so we chalked it up to some type of food intolerance.  By Labor Day weekend we began to notice what we thought may be blood in his diapers.  We showed one to a friend who has been an RN for many years and she confirmed that for us.  We rushed off to the ER, scared and looking for answers.  After 4 hours, they sent us home with essentially no answers except that it was definitely blood.  We followed up with our pediatrician (Dr. Harrington), ran all sorts of tests and everything came back totally normal.  They checked his hemoglobin levels and he was still in the range of normal at a 10 (12 is ideal).  We did a lot of elimination diets and Landon would get better but then the blood would return.  Last Friday I changed a diaper that was essentially all blood.  It was by far the worst one he had ever had and it freaked me out!  I called Dr. Harrington, to get a referral to a GI specialist.

Jump forward to Monday morning.  I received a call back from the nurse at Dr. Harrington's office.  The first opening at the GI specialist would be nearly 2 weeks away.  I decided to go ahead and take Landon in to see Dr. Harrington for a check up, because he was losing interest in eating and drinking, and they were able to work us in right away.  We saw her associate, Dr. O., because she was out on jury duty.  I explained the situation we had been going through with Landon and she suggested taking a bit of blood to check his levels again.  Landon very bravely and calmly gave up some drops of blood and we were on our way.  I was to receive a call back from the nurse in about 30 minutes with our results.  Within 15 minutes of leaving the office I got a call from the doctor.  Landon's levels were at a 5!  She said we were to go immediately to the hospital.

We arrived at Wesley Medical Center and got all checked in on the Pediatric floor.  Then came the interrogation by the residents by ONE resident in particular.  She kept questioning me about stuff that had happened back in September and October.  Asking me to recall tiny little details and aggressively asking questions which made me feel like I was somehow responsible for what Landon was going through.  She wanted to know whey we were currently following a gluten free/dairy free diet with him.  She made me feel like I was doing something wrong by feeding him those foods.  One stupid question she asked was why I was in the hospital for 3 days instead of 2 when Landon was born.  "Uh, because he was born late Monday night, you idiot!  Besides, what does that possibly have to do with what we're dealing with right now".  That's what I thought to myself anyway.  She then decided that we needed to stick with the gluten free/dairy free foods.  So that was a good thing I was doing?  Get out of my room, Lady! 

The whole first day was awful.  People in and out constantly, wanting to look at or poke around on Landon.  Scott and I were beyond worried and scared out of our minds.  We had to hold our baby boy down while they inserted an IV in to his tiny little hand.  He cried.  We cried and cried and cried.  The attending physician decided not to do a blood transfusion at that time because they didn't feel it was necessary.  None of us slept well.  Scott went home to take care of business there while I stayed with Landon.  For me, leaving him was not an option.  We were told the GI specialist, Dr. Hattar, would be in to talk with us about getting a plan in action but that she wouldn't be in until Tuesday afternoon.

To our surprise, Dr. Hattar showed up Tuesday morning and we were very happy to see her.  Within the first minute of meeting her I felt a connection and her compassion was instant and outward.  While she was speaking with us Landon had a diaper I needed to change.  She took a look at that diaper, full of blood, and I felt something change.  She looked me right in the eye and said, "We can't have him bleeding like that.  His numbers are at a critical level and we need to transfuse right away.  I am going to talk with his team of doctors here and make this happen for you."  As soon as I heard the word "critical" I began to tear up.  Dr. Hattar put her hand on my leg and reassured me that we were not alone and that she would make sure Landon was well cared for.  I looked up at her and she also had tears in her eyes.  In that moment I felt safe with her, knowing she really cared and wanted to help Landon get well.  Not only did she want him well, she also wanted to reassure me that all would be ok.  I have never in my entire life had an encounter like that with a doctor.  She was sent to me for a reason.  One point of interest; we were originally scheduled to see her associate but she was out of town.  It's no coincidence that we got Dr. Hattar instead.  We were SUPPOSED to get her. 

Landon went in for a Meckel's scan, which would check for Meckel's diverticulum.  I would go in to more detail about that but there's no need because it came back negative.  He was sedated for this scan, which concerned me because of his extremely low hemoglobin.  I was a worried wreck for that hour!  Landon got to have his very first popsicle while in recovery from sedation and he thought that was pretty awesome.  He also began his first blood transfusion.  We got to see two familiar faces while in recovery, Landon's friend Krystal who works in the nursery at our church and our friend Amy who works on the Pediatric floor.  Familiar faces are always comforting.  It was especially great for Landon to see someone he knew who had cared for him in a different setting.  

Tuesday afternoon and evening were somewhat difficult, as we still had no answers.  Landon was also very agitated as he was coming down from the sedation.  They set him up for another scan Wednesday morning and if that was negative as well they would set him up for upper and lower GI scopes Thursday.  Dr. Hattar decided not to wait and booked an operating room for his scopes Wednesday at 12:00.  Did I mention that we had to keep him without food or drink during most of this time?  Yeah, that was rough too!  Try telling a 19 month old he can't have milk or even water.  Not fun.  

He received another transfusion Wednesday morning.  Dr. Hattar wouldn't perform the scope unless his levels were at a 7 or above because the risk was just too high.  We went down to the surgical area Wednesday at 12:00.  Handing over my baby while he cried and screamed, "Mama, Mama!" was one of the hardest things ever!  The procedure took about 30 minutes and when Dr. Hattar came out to talk with us we were very anxious to hear what she had to say.  She came out with some pictures and described to us what we were seeing.  Then she said it.  Ulcerative Colitis.  The words I had been hoping and praying we would not hear.  All I could think was, "NO, not the autoimmune disorder.  This is for life!"  Dr.  Hattar reassured us that we would not be alone, that she would be there with us every step of the way and that we WOULD make sure Landon received the necessary treatment to get well.  She told us he would begin treatment immediately and that she would be back in the morning to answer all of our questions after we had some time to think and process everything.  Although I was relieved to finally have an answer, I was overcome with a deep sadness.  In that moment I went from simply being a Mama to being a Mama to a child with a chronic illness.  It was quite a blow.

To be continued.......