Mom’s Research – Everything Has A Cause

This is a picture of my son in the hospital the day after his 1st Birthday.  How we got there was a mystery and our future was unknown.  This is my story of a bad parenting moment with a lesson learned that guides me through the rest of my life.

We had just settled on a new house.  We were in the same neighborhood but our last house was just too small after our 3rd kid came.  With 2 bedrooms and one full bath (there was a third bedroom but it was the size of a closet) we were going a little crazy.  The market was starting to recover and so we worked months to fix up our house and see if we could sell for more then our mortgage.  When we finally got a viable offer we searched for a new house.  We wanted to keep the same schools and neighborhood but just needed to add another floor to our house basically.  And then we found it – in our neighborhood – double the size – everyone had their own room.  Then the loan process begins.  Months go by and we have finally arrived.  The perfect house.

Unpacking was snails pace and rooms were slowly set up.  About a month later it begins.  Owen (almost one) gets a cold.  It gets worse and just not going away.  Back and forth to the pediatrician.   He was having a hard time breathing.  His oxygen levels were a little low.  They did a nebulizer treatment with Albuterol to open his lungs.  We go back and forth every few days. Owen gets treatments, he stabilizes and we go home.  But one visit she checks his oxygen levels and decides we need some more help.  She called ahead to the ER and had me drive over there.  He was tired and wheezing.  I calmly did everything the doctors said and it didn’t occur to me how dangerous this was until she pointed to his neck.  She said, “Do you see that muscle pulling like that?”  That shows you how hard that body is having to work to breath.  At some point it just gets too hard and the body gives up.  With that we were off to the ER.  4 hours there and the breathing was better and we were back home.  The ER doctor said to do a check up with my pediatrician the next day. That night I got out my Eucalyptus oils and put them in his humidifier in his room.  Fresh sheets, clean bath and down for a good nights sleep.  All morning I held him and felt he was doing better.  I didn’t really need to go to that check up.  He was drinking and doing a lot of sleeping.  But about 3pm I decided better safe then sorry and called up for an appointment.

I arrived and his oxygen levels were checked.  The doctor became frantic.  I hadn’t seen her before so I felt she was over reacting.  She went looking for their oxygen tank and was trying to get it hooked up.  She had the nebulizer going and then she just looked at me and said I am calling an ambulance.  I told her I could drive there as I did yesterday but she wasn’t having it.

I was sitting on the floor with Owen in my arms and an oxygen mask on his face, when the Paramedics walked in.  They calmly assessed the situation and then brought in a big delux oxygen tank and machine.  They hooked him up to that and gave some medicine and those oxygen levels shot right up.  After Owen was stable each paramedic took a different machine, I carried Owen and we paraded out of the office into the ambulance.

We ended up being admitted and spent 7  days trying to get him stabilized.  His breathing would become rapid and erratic and we couldn’t figure out why.  His head wasn’t hot.  But the nurse was changing his diaper and she said – OH MY GOD – feel his stomach.  It was burning up.  They had been checking his temperature by his head and it wasn’t showing a fever.  A rectal check showed he was almost 104.  He had tested negative for a bacteria. They just put him on baby Tylenol/Advil while we waited out the virus.  The fever spiked fast and hard every 4 hours, so soon we were on an automatic flow of fever reducers.  After another day or two they decided to recheck and do a treatment of antibiotics.  This began our recovery.  We also had a technician come in every so many hours with a machine that forced air into his lungs to help open them up.  He had quite a lot of liquid and mucus in his lungs by now.

Trying to bite the bandages off.

 

I lived in that hospital room and never left Owen alone.  My husband brought meals and my friends visited.   One afternoon I was talking to one of the nurses.  She said that when she has kids she wants to be like me as a mother.  Confused, as I was in the hospital with my child with an unknown illness, I asked why.  She said, “You are so calm.  You stay composed and calm no matter what.”  I told her that I am not a doctor and there is not much I totally understand about what is going on, but I know that Owen needs to feel secure and calm.  I am the person he turns to to see if everything is ok.  It is my job to make sure he knows by my actions that everything will be alright.  I told her about my own mom.  She was my rock.  One day we got lost in New York City in the middle of the night.  She tried to flag down a car in the rain at 2 am to get directions and they just drove by.  We were on a dark road in Queens.  She got back in the car and just started crying.  She said, “I don’t know what to do”.  I remember thinking “We are going to die.  Its all over.  If mom doesn’t know what to do its the end.”

Day 5, 3am the alarms on his breathing machine go off.  The numbers were crashing.  The nurse races in.  She just keeps raising the oxygen.  It is now at 100% and yet the alarm is not stopping.  He is breathing but his oxygen levels are low.   The nurse went over by the door and hit a button.  An alarm in the hall and red lights went off.  Not like a fire alarm, different, quieter but alarming.  Within a minute approximately 15 different specialists had entered the room.  They were all looking at Owen and talking and I couldn’t understand a single word.  The machine kept beeping and the alarm was still sounding.  No one was doing anything with him.  I wanted to scream – DO SOMETHING.  My body started to shake uncontrollably and I was trying not to see the reality that something very bad could be happening right now.  I looked over at the nurse and she said – Now its OK to let it go!  Even she thought I should panic.  I have never felt fear so helplessly in my life.  I always thought if we were in the hospital we would be safe.  This isn’t an incurable disease.  This is Bronchiolitis – or at least that is what is all over the medical reports.

Maybe 3 more minutes went by (also known as 3 hours in my mind) and his oxygen levels started to rise.  Everyone watched them rise – no one left the room.  They talked quite a bit and soon he was at 100% and they started to lower the oxygen in the breathing machine back down slowing and he was stable again.

One doctor and a nurse stayed behind and explained to me that they think the last “forced air” breathing treatment dislodged some mucus that then blocked his airway.   They discontinued that treatment.  So when the technician was back at 5am to do it again I could feel the physical body reaction all over again.

It was all down hill from there (or up hill).  He got better and better and at 7pm on day 8 they said I could take him home because he was 4 hours off oxygen.  I looked at her in terror.  He has breathed on his own for 4 hours after 8 days of needing assistance and I am supposed to go home at night and pretend to sleep and I have no alarm that tells me if he is breathing.  She smiled and said, “How about we check you out in the morning?”  By 4am my confidence was back and I was wishing I wasn’t still on the cot/chair which had become my new bed.

My chair by day and pulled out into a little bed bed by night.
Leaving the hospital

We left the hospital the next morning and we thought it was over but that is actually where this story begins.

While I was in the hospital my grandmother passed away.  We went home, packed up and headed out the next morning to Boston.  10 hour drive.  The night before we left I slept with Owen in the living room so I could just obsessively watch his breathing and not disturb anyone.  Everything was fine.  We took the long drive.  Got a nice hotel.  He was doing great.  I had comments that people couldn’t believe he was just in the hospital.  He was walking around, happy, talking.   We were there a few days and then headed home.

We got home at midnight.  I carried Owen to his bed and then we all went to sleep.  At 4am I was awaken by him coughing.  I could hear the mucus.  It was starting again.

I went back to the doctor the next day.  They thought he may just have a bronchial situation or asthma and I was suited up with my own Nebulizer and Albuterol prescription.  I used these at home and it started getting better.  And then it flared up again.  I was beginning research into asthma and other breathing issues, inhalers, etc.  I wanted to be ready at all times.  This just might be something he has for life.  The doctor did say they sometime grow out of it.

But the more I thought about it the more it bothered me that he had never had any breathing problems until this.  He went the first whole year of his life with only an ear infection.  There has to be something else.

It started since we moved. – Oh No – don’t even think it.  We sold our souls getting into this house and now my kid is allergic to it.  Maybe it is just something in the house? And this is where the adventure begins.

I started with the ventilation system.  Its air into lungs – I felt it was the most obvious.  I found the best vent cleaning company I could on Angie’s list and had them come out.  I just told them I had mold in the vents and I wanted them to do the full treatment.  They did the initial cleaning and told me I didn’t have any mold.  I told them to do the mold handling anyway.  He tried to explain to me it was a waste of my money.   I said, “It’s my money I am wasting.  Can you just do it and kill anything anywhere in my vents to make me happy?”  And so the vents were clean.

He was still getting sick.

Next I took him to a nutritionist, because they also did allergy testing.  He tested pretty well and for no specific allergies that we could see.  But he was still getting sick.  After a few visits my nutritionist had a great idea.  I started taking samples of things in the house and he tested him specifically for that.  I cut some of the carpet, the dog and cat hairs, grass outside, laundry detergent, all foods he was eating, anything we could think of.   There was a response on the testing for the carpet and the dog.

So up came the carpet.  There was old hard wood underneath so we got it refinished.  There was now no carpet on the main level (which included bedrooms and everywhere Owen would go).  But Owen was still getting sick.

We had the dog shaved, but we had the dog before Owen was born so it didn’t seem like the correct reason.  And he was still getting sick.

I found myself one night on the phone with Kirsten crying.  I said, “My kid is allergic to my house.  What do I do now, just move?”  She told the 2 of us to come live with he while we figured it out.  I stayed home with a few more ideas but that was my next back up plan.

The next visit the nutritionist had the next great idea.  I took small glass jars and put them in every room in the house for 24 hours.  Then I sealed them while still in each room and brought them back to the doctor.  Owen had a reaction to the air in his own room, which was why he was fine when we slept in the living room.  Ahh … finally we are getting somewhere.  I decided that because his wall backs to the kitchen there is mold in the wall and a leak from the kitchen.  Next call to the plumber.  But the plumber sees nothing.

Before tearing down the walls, I thought maybe a little more direction on what I am tearing down.  I decided it was still mold somewhere.  I searched every mold specialist in Angie’s list and found one with like a million 5 star reviews.  I talked to them and they said they were only for Maryland.  I told them my story and that they were my only hope.  After this I am looking for a new house.  He took pity on me and scheduled for the next week.

After sleeping on the couch all week my husband moved Owen’s crib to our bedroom since I was clearly never letting him back in his room again.  The next day Owen was sick again.

And then it hit me.  It all came together.  How could I be so stupid?  Have you ever have that moment where a ton of tiny little instances that meant nothing all come together and then it is all so clear.  I have been killing my kid.

The next day the mold specialist was arriving so I waited to confirm with him.  He did full testing of every room in the house, the back yard, etc.  He had machines everywhere.  I brought him into my room and I showed him my crib.

There was a little black stain in the stitching on the mattress about 8 inches long.  I had cleaned it but it never came off.  The crib underneath had a layer of dirt.  I cleaned it off but it came back faster then anything else in the house.  I had remembered to myself after changing Owen’s diaper the week before that I left the wet pants there.  In the morning when I saw them on his bed they already had mold.  When we were moving I put the mattress in the shed.  It was a good shed but not climate controlled and it has rained quite a bit.

I asked him what he thought of the crib.  He told me after inspection (for maybe 30 seconds) that the inside of the crib was so filled with mold that each time I put him down on the bed the pressure would push out tons of mold spores which he would immediately breath in.  He said there was so much mold that it would make an large adult quite sick.  On top of that, I was doing the Eucalyptus oil in his humidifier in his room and opening up his lungs for big breathes of mold.

I threw away his crib, all sheets, his dresser (because it had gone outside also), basically all of his clothes and anything that had been in his bed ever, stuffed animals, etc.  I bought special mold laundry detergent for anything else I didn’t throw away that he might ever touch.

The next week I got a call with my mold results for my house.  The guy walked me through everything and there was some mold in the basement but the rest of the house was pretty much fine.  He said he told his wife what happened and she said, “She must feel like the worst mother on earth.”  As a man he doesn’t understand what he is saying to me, but it was true.

How could I have not put it together?  How could I have not known?  I didn’t even really know what mold looked like.  I only new black mold and the stuff in the shower.  This looked like dirt and dust.

I learned 2 important lessons. First – there is a lot I didn’t know about mold and I am now a self declared mold expert.  Second – when you it doesn’t make sense, there is something more to know.  There is a cause and you can fix it.  You just have to keep going until you find it.

With those lessons I begin this blog to discover the whys and fixes for our most annoying parenting issues.

Here is Owen a few years later.  A superhero and never had any breathing trouble again!

Christie

 

3 thoughts on “Mom’s Research – Everything Has A Cause”

  1. Omg I never knew the whole story Christie! That is sooo scary! I couldn’t imagine that happening to me. But I feel like your article will definitely help any Mom that may come across any similar issue. And you are an amazing mom. It’s so scary to think of loosing your child over something that was so simple but so hard to figure out.

  2. What a jaw-dropping and triumphant story, Christie! – Thank you for sharing it.
    This just goes to show that some of the most gut-wrenching situations can be the catalyst for the most unexpected and amazing opportunities. – Your blog will be a tremendous help to numerous families.

    There is no price that can be put on the knowledge and wisdom you got from this experience. I am truly inspired by the wealth contained in your narrative. I love the great conclusion and how victorious Owen stands healthy and tall in his Superman attire!

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