Ronan in the PICU

When I woke up this morning I was excited.  Tonight we were going to the art center and my teacher's art gallery for my art class.  She had promised some delicious refreshments and a lot of fun.  I felt it would be a nice change of pace to get out a little bit. I never expected to end up in the PICU.  Ronan had been acting strange since he came home from his endoscopy on Tuesday.

The first thing I noticed was that he was super red.  This wasn't completely alarming because his dad naturally has a red face and Ronan and my other kids have it from time to time.  But what was strange was his face was red everywhere like he was overheated but his temp was normal.  His hands and feet were swollen and red.  I assumed the lethargy was from being put under anesthesia and figured a nap would cure it.  By the evening he was still really tired and I thought maybe all the procedures were starting to burn him out.

 

Ronan signing "Daddy"

The next day he woke up like himself and I figured we were fine.  An hour later his home teacher and Speech therapist showed up for his session.  He kept falling asleep during the session.  Our guess was he was still tired from the endoscopy.  The rest of the day seemed to go the same.  He would get bursts of energy and then collapse in exhaustion.  But he was eating ok and I thought maybe he needed more recovery time.

I got a call from his GI doctor saying they were going to do one more endoscopy.  I remember the sinking feeling that settled in when I heard this.  I put up a small protest but relented when they insisted this would be the last one and the surgeon would be present to watch this time.  I looked over at Ronan who was curled up in a ball on the floor and thought "How much more can he take".

He seemed like himself for the evening and I put him to bed thinking things were ok.  This brings us to this morning.  He woke up fine with a burst of energy and as the morning progressed he grew more and more tired.  He struggled eating his lunch and I was suspicious that maybe his esophagus was closing up again after only two days.  I put him down for his nap.  He slept four and half hours.  I gave him his bottle and he struggled getting it down.  I tried his pureed foods but he refused them then fell asleep on the floor. 

I was thinking I would take him to his pediatrician in the morning. He started stumbling around the house and falling over and my instincts told me to call his GI doctor. Something inside just told me he couldn't wait until morning.  His GI doctor was afraid his esophagus had perforated during his endoscopy or that his thyroid was in shock from all the procedures since he has hypothyroidism.  He sent us to the ER and said he would call ahead so they would be ready for him.  When we got there they had all the tests ordered.

Ronan was wide awake and being ornery to all the nurses.  He wasn't allowing them to examine him which is the usual Ronan.  I heard the triage nurse tell the nurses in the pediatric ER that he didn't know why I had said Ronan was lethargic because he was acting fine.  At this point I figured they'd just send him home.  My mom was there and the nurse told me it would be fine to go to my class since I had explained everything to the doctor and signed releases.  They promised to call at the first sign of trouble but expected he'd be going home.

A half an hour into my class my phone rings.  My mom called to tell me that Ronan's blood sugar is 21 and they are putting a tube in him and he's super lethargic.  My first thought was they were intibating him and things were really bad.  Isaac drove to the hospital which was a good thing because I cried the whole way there.  Isaac kept assuring me Ronan was fine and that it probably sounded worse over the phone.  When I walked into the ER I made my way to his room and rounded the corner cautiously.  I was afriad of what I would find. 


The tube was an NG tube and I breathed a sigh of relief.  They had inserted to get sugar in him quickly.  His sugar was up to 84 and I breathed another sigh of relief.  He was still out of it.  They told me they now understood what I had meant about him being lethargic. The helicopter people were placing an IV (they can place the IV in him when no one else in the hospital can). On more than one occasion I have thanked God for the helicopter people.  Normally it takes six people to hold Ronan down but this time he wasn't resisting.  When they checked his sugar again a half an hour later it was back down to 50, it wasn't stabilizing.  They decided to send a constant stream of glucose through his IV and this seemed to work.

The next thing they noticed was his heart rate was dipping dangerously low.  The tech came in to take his temp and it was 93.  She went and got a different thermometer and tried a different spot.  It was still 93 degrees.  I was stunned "Is that his real temp".  The nurse nodded and told me it was because they had left him without clothes and blankets while they did the tests.  They brought heated blankets and his heart rate returned to normal but his temp didn't.


I asked them to call his Endocrinologist and they looked at me confused.  I told them that she handles his thyroid but also deals with blood sugar issues.  They weren't convinced at first but after me asking again they decided to call her.  His Endocrinologist felt she knew immediately what was going on.  She thought his Adrenal gland was crashing.  Ronan has been on chronic steroid use for his asthma.  She thought this coupled with all the stressful procedures shut down his adrenal gland.  Without a functioning adrenal glad you can't control sugar, body temperature or handle stress.  This would be why this occurred immediately following his last endoscopy.  It was the final draw that threw him over the edge into adrenal failure.

They decided he would be treated as though his adrenal gland shut down until proven otherwise.  He was admitted the the pediatric ICU as he could no longer stabilize his sugar or temperature and he was barely responsive. 

 Now this is where we sit.  I am typing while Ronan is sleeping under his super heated blanket.  They tried heat lamps but his temp dropped to 91.  His temp is now at 95 and it is the best they can get so far.  The blanket is streaming constant heat from a large machine on the floor and it feels like a sauna in here.  The nurse asked me how I could stand sitting in here because it is so hot but I found a cool spot in the corner so it isn't so bad.  I'm just trusting God to get Ronan through like he has always done before. 

The hope is that it is adrenal crisis and he'll respond to the meds.  If it is not they have no idea why this is happening or what will happen from here. The main problem with why they are still not sure it is adrenal crisis is that labs that should be off are normal and this has them worried.  It's hard to be in the dark but I know God isn't and he knows exactly what is going on with Ronan.  I'm praying he will guide the doctors to the right answer and Ronan will be back to himself soon. 

Another thing that needs prayer is what this means long term.  If Ronan is in adrenal crisis that means surgery would be very dangerous and even future dilation life threatening.  The problem now becomes when Ronan's esophagus closes again there will be no way to fix it.  How will he eat?  I'm trying to focus on the here and now but that is weighing heavy on my heart.  I feel like we may have missed the window to fix the problem.  I'm trying to fight anger about this.  Why didn't they go back and take care of the problem right away.