Friday, January 20, 2012

Every Breath

The following post is wordy, I know.  Brook asked me what I was working on and  I said, "I am trying to write about you being sick but it is going on and on and on."  She said, "That sounds about right because it did go on and on and on!"
I wrote this entry as a way to document what has happened to her.  Do not feel obligated to read it, no one's feelings will be hurt.  I cut out a lot of smaller details but it is still long.  The short version is this:  She couldn't breath, we found the answer and I am grateful for her, for medical advancements and for the Lord in our lives.

Brook didn't breathe from the beginning.  Everyone told me that the second childbirth experience is easier than the first.  They lied.  I'll make a long story short but for all who are squeamish about childbirth stories you might want to skip ahead.
 Labor had been long, the final stages had been long.  I tried and tried but she was stuck and I knew it.  I told the nurses "this baby isn't moving, something is wrong."  The nurse smiled and patted my hand and said, "It's alright Honey, women have been having babies for centuries, you just have to push harder." (I have never wanted to slap a person so much in my life.)  After more than two hours of this I was completely exhausted and began to cry, sob really.  I was loosing it.  John finally convinced the doctor that I knew what I was talking about and they had better do something to help or call someone in that knew what they were doing.  That is about the time the monitors all went off, they had lost her heartbeat.
  The doctor pulled out a contraption that looked like a toilet plunger and said, "This is going to hurt."  (Thank you, Captain Obvious!)  The room began to fill with other nurses and doctors as they began to prep for surgery in case the suction didn't work.  The doctor tried to pull her out but was pulling me off the bed and the bed across the floor.  He had John grab hold of me under my arms and pull while he and the nurse put their feet on the bed and pulled the other way.  There she was, blue, shaking and in pain.  Most children are born crown of the head first.  She was in the birth canal with her head sideways.  The more I pushed, the more tight she became with her left ear pressed against her shoulder. It hurt her to move her for about a week.
  They never laid her on my stomach like they usually do, she was taken away to the warmer and worked over. I couldn't see her, I couldn't hear her.  After what was only a few moments but what seemed like forever some one said, "Oh, there she is!" At the same time someone moved out of the way and we made eye contact.  I knew her name, I knew we'd be good friends and I knew with that look she was saying, "That was not a pleasant experience!"  She never cried, only took in little fluttering breaths.  They took her away and I went into shock and passed out.  I don't remember much until I awoke a few hours later in my room.  I was informed that she had spent some time in an oxygen tent but was doing fine.  They brought her to me and I finally got to hold her.  My favorite part of giving birth is holding the baby's face close to mine and smelling the sweet scent of a newborn's breath.  As I held her I was grateful that she was breathing at all and that I got to keep her.  I was grateful that the ordeal was over.
  Fast forward a few years to First Grade.  Brook became sick and was having difficult, labored breathing.  I took her to the emergency room and she was diagnosed with asthma.  The diagnosis hit hard but I knew it wasn't the end of the world.  There is medication and treatment and ways to keep it under control and we just needed to learn what to do.  We learned what her asthma triggers were and did our best to avoid them and prepare for the ones we couldn't avoid.  Feeling that asthma shouldn't be an excuse to not participate, we also kept her active.  Life moved on.
  Fast forward to a the last couple of years.  The asthma was getting worse and worse.  We tried different medications, and combinations of medicines.  After a year of this her breathing was so bad that she became winded just going up or down the stairs. I saw her have to rest in the middle of sweeping the floor. She had to drop out of her activities and was missing a lot of school. She was in the emergency room several times. The Asthma specialist finally said there was nothing else she could do.  If Brook wasn't reacting to the medication then there must be something else wrong.
  This brings us to last spring when the tests began.  One of the first was also one of the worst.  They measured her breathing capacity and then poisoned her then tested her again.  When I signed the permission forms to let them run the test I was told that they wouldn't let her breathing get bad beyond a certain point.  They underestimated the condition Brook was in and her breathing levels dropped well below what they intended and then they had difficulty bringing her back!  She was trying not to panic knowing it would make it worse. She spent the next couple of days suffering.  I felt like the worst mother EVER!  I had allowed them to do that to her.
  She had her heart and lungs tested in many different ways.  Everything from MRI, to utlrasound to treadmills.  Everything was normal except for some blood work.  She tested positive for schleroderma, or hardening of the organs.  We were left with that diagnosis for several months while we waited for an appointment to open up to see a rheumatologist.  I was beside myself with grief.  I knew what schleroderma was and I wasn't sure I could stand to see my precious girl suffocate and know there was nothing I could do about it.  I can't put into words what it was like to see her suffering so.  It was ripping my heart out.  Meanwhile she was left on the heavy asthma medications just in case.
  We finally got to see the auto-immune specialist and he reviewed her file. It turns out that some of the medication she was taking causes a false positive and we needed to get her off of it right away.  We have since done more lab tests and the SD numbers are going down like they should.
 This was a huge relief but we still didn't know what was causing her difficulty.  We were now well into October. At the beginning of all this she had received a priesthood blessing that told her to be patient and the doctors would be inspired with the answers to help her.  At this point I was tired of being patient.  I wanted to know!  I wanted the problem to be found so we could fix it.  I know that Brook was frustrated too but she never complained.  Every time I would ask her how she felt she'd say, "the same," or "It's not pleasant."  Then she would smile to reassure me.  I found it fascinating that she was the one comforting me.  She knows I like to be in control of everything and that I felt out of control in everything because of worry for her.  She is sweet and kind and wise.  I am trying to be more like her.  One evening I was thinking about the doctors being inspired when the lung specialists called with an idea.  He wanted Brook to see an ear, nose and throat specialist and a speech pathologist.  It sounded crazy but we were desperate and I had been praying for a new idea.
  The ENT put a camera up her nose so he could see straight down her throat and the Pathologist had her preform a few tests and try some different exercises and we had a diagnosis;  VCD, vocal chord dysfunction.  It seems Brook's vocal cords close when they aren't supposed to cutting off the air supply. Stress makes the condition worse and is not uncommon in teenage girls who are high achievers.  The heavy asthma medications cause it to to be worse too.   She has spent the last few months in a type of physical therapy teaching her to control it.  She was asked on her first appointment to place herself on a scale of 1 to 10. One being no problem breathing and 10 being unconscious.  She rated herself at an 8.  Still conscious but feeling dizzy.
  Like everything else she does she put herself 100% into getting better.  It has been hard and there were tears sometimes but she worked through it.  She graduated from therapy this week placing herself on the scale at two! It was two because she could breath but still has to think about doing it right.  She is off of all asthma medication except for her rescue inhaler. Two weeks ago she gave a speech and was able to breath through the whole thing. I was with her afterward when someone asked her how she was doing.  She was able to answer and tell the whole story.  I found myself trying to answer for her (it has become my habit to jump in so she wouldn't turn blue or feel frustrated when she couldn't get the words out.  I'm going to have to work on not doing that to her anymore.)  When it occurred to me what was happening, that I didn't have to talk for her or stand so close or be prepared to rescue her, I cried.
    I know other mothers who have not had the happy outcome we have had. My heart goes out to them.  I can't imagine loosing her.  I am grateful I have not had to endure that and this knowledge makes her life that much more priceless.  I am grateful to my Lord and the sweet comfort he sends during trials.  I snuggle up next to her whenever I can and find myself distracted by her breathing.  I don't count the breaths any more or time their duration.  I just listen.  Every breath is precious.


Camile Kellogg said...

Jen, This brings tears to my eyes. God is so good! Love, Camile

jess and lacy said...

Im so very glad you have your solution! What an amazing daughter you have! Thanks for sharing :)

Unknown said...

I just finished reading this post. Yes, all of it. I have always loved your family...I loved to sit and watch all of you love one another. The Tingey family is one of the few I miss the most.

After reading the post, all I can say is WOW! My thoughts went to John 9:2&3 - "And his disciples asked him, saying, Master, who did sin, this man, or his parents, that he was born blind?

Jesus answered, Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him."

All things in this world have a purpose in Our Father's Plan. Even disease, I reckon.

I love you guys. And, I really do miss you. I am so glad you are all well.


Charley Childers said...

OK. The "Unknown" comment is from me - Charley Childers. I did not have a "name" then, I reckon. I do now.

Now, with my dumb luck, the thing will auto-correct itself and leave you wondering, "What is he talking about?"

Oh, well....

Anonymous said...

This post was just another example of why I look up to you! You are a wonderful wife, mother and sister . . . I love you!

Kelsey said...

I hopped onto your blog last night and really enjoyed reading all about your family! What an amazing girl Brook is! I had no idea she has gone through so much!