Emotional Break down

Let me start off by saying Ellie is fine.  Ellie is improving each day.

I (Mom) had a rough day yesterday (Tuesday).  I was emotional and was honestly just not up to blogging.

There wasn't really anything big, bad or scary.  Nothing new.  Just the same stuff viewed in a different light with different wording that threw me off an emotional cliff.

Once again, everything is fine.

Most times in my life I am able to forget about Ellie's disabilities.  I know that sounds strange.  But it's true.  I see her and love her as she is.  She is beautiful and smart and patient and kind.  She is my daughter.  She is a sister.  She is a daughter of God.  She is perfect just the way she is.  This is the way I see her.  But sometimes something small happens and an earthly reality sets in and I realize how fragile life is and she is.

I will give you an example.  One time a girlfriend (C.F.) and I took our kids to a local train park. Do you remember C.F.?  They have big and small trains that you can ride on.  The small train is like on "Silver Spoons" TV show.  Where you straddle the small train and ride around on train tracks.  The train goes about 1 mile an hour.  Ellie was about 2 or 3 at the time and I could easily hold her.  So I was planning on holding her on my lap and we could ride the train together.  The train owner would not allow anyone to be held.  Ellie could not ride the train.  It broke my heart. 

For some reason that experience, although a tiny thing, really hurt me.  I realized in that instant that Ellie's life would never be normal.  Of course I knew this intellectually because my at 3 years old she couldn't roll-over, sit up, talk, walk, or hold up her head.  But I still had it in my heart that she could participate in everything, it would just take some adaptations.  I don't remember how I acted.  Knowing my personality, I probably over-reacted and acted poorly.  I do remember that I cried due to the unseen future of lost experiences that had just been heaped upon me.

Well Tues one of those realities hit me.

Monday 4/17/17 Day 14

She got a new Dr. on Monday.  He is really really kind.  And he has a way of saying things in the worst possible way, but in the kindest way imaginable.  It is a strange combination. 

He said that her lungs sounded STIFF.  No one else has used this word to describe her lungs.  Other people say they sound "diminished", or "I don't hear good air flow", or "The bases (of the lungs) are really quiet".  These are terms I have heard a lot of times before.  But not STIFF.

He mentioned they were stiff on Monday. 

Monday day and night her CO2 readings were good both on Bipap and on breathing trials.

So Monday night they decided to try her off bipap completely overnight (only on a nasal canula).  We did a blood gas at bedtime.  Then another at 2 AM.  If it was unchanged at 2 AM she would continue to morning and they would do another blood gas in the morning.  At 2 AM her bloodgas had risen (meaning she was retaining CO2) so she had to go back on bipap.

I (Mom) couldn't stop my brain from thinking worst case scenarios and couldn't get back to sleep for 2 hours.  So I was tired the next day. (This was probably the main reason Tues was an emotional/overwhelming day for me).

Tuesday 4/18/17 Day 15

Tuesday the New Dr. wanted to increase her baclofen (medicine to relax tight muscles) to help with the stiffness.  They had talked with Comprehensive Care and Pulmonology on Monday and they were both on board with increasing the baclofen.  (This was confusing because look which Dr.'s I list below)

I resisted on increasing the baclofen because we have just been weaning down on the baclofen. 

She has had 3 Dr.'s suggest going down on baclofen (Comprehensive Care, Neurology and Pulmonology) in order to help with...
-sleepiness
-bowel regularity (you need some muscle tone---tightness)
-trying to regain tone (tightness) to control secretions to prevent pneumonia
-and higher baclofen can lead to a lower seizure threshold (meaning more likely to have seizures).

So those were the reasons we had been lowering baclofen.  Now they wanted us to increase baclofen.

I didn't say no, but I listed the reasons I just listed as to why we had been decreasing baclofen.

I suggested that comprehensive care come and score her arms and legs.  Comp Care Dr.'s score stiff joints/muscles on a 1 to 5 scale based on how tight they are.  I thought if they could score her then we could know how much tighter she was from her last visit and then we could make a decision whether or not to increase the baclofen.

They agreed, but comprehensive care has never come over. 

It felt like yes, we should increase her baclofen for her lungs, but for a million other reasons, no we shouldn't.  It is hard when you feel like you can't make a good medical decision.  All medical decisions have consequences and it is hard when there are bad consequences with either decision you make.

When we discussed the blood gases she had had I asked how they compare with previous blood gases from previous years.  They were similar.  She pretty much only has blood gases done when she is really sick in the hospital  So that may not be a good comparison.  But at least they are not worse.

The new Dr. said that if someone came into the ED with those blood gases they would be admitted with that as their only symptom.  So although we were calling them "good" blood gases.  They really aren't.  But it may be the best we can get without going to a trach and ventilator.

I spoke with someone from Rainbow Kids yesterday and she pointed out that the decision to do a trach or not may come down to quality of life versus quantity of life.  How can anyone be asked to make that decision?

Would her quality of life go down if she got a trach?  I don't know.  Would our family's quality of life go down if she got a trach?  I don't know.  That is what makes it hard.

Her secretions have been greatly decreased (so she is much improved).  Her airflow is sounding much better.  I thought because of those things and her amazing oxygen sats (o2 in her blood) that her chest xray would look amazing.

It didn't.

This is the point of day when I started crying.  The xray was slightly improved, but not as fantastic as I had imagined.

They had to remind me that her lungs had been bad before getting the virus and that xrays lag behind physical symptoms.  And they "treat the patient not the film.".  OK, OK.  But I still thought in my mind that they would be better.

It is hard when your expectations so not match reality...in all aspects of life.

The Dr. asked me why I was crying.  I said, "Because most of the time I can forget that Ellie is going to die, but sometimes I remember."

(DO NOT MISINTERPRET>>> SHE IS NOT DYING RIGHT NOW>>>BUT SOMEDAY)

I know that sounds dramatic, but feelings are what they are.  I learned a long time ago that you can't change feelings,  Feelings are just that, Feelings.  The way you feel at a given moment.  You can only change your reaction to feelings.

The Dr. said he wanted to come back and talk about the "bigger picture".  If you have had a child with disabilities long enough you know this means they want to talk about "end of life decisions".  (ONCE AGAIN>>>SHE IS NOT DYING RIGHT NOW).  Dr.'s always want you to make these decisions ahead of time.  Jason and I already have a plan...it is called..."Do everything to save her". 

There was a time when she was literally near death and Jason and I had made a decision that if her heart gave out we did not want anything done to save her.  She pulled through.  So we went back to our stand-by plan of "Do everything to save her".

There may come a time when Jason and I need to make tough decisions regarding end of life.  But that time is not now, so stop bugging me.

Sorry if this line of thought disturbs you, it is a difficult topic for everyone.  Unfortunately when you have a medically complex child it comes up A LOT!  I have had 4 different professionals mention it at this hospital stay alone.  And she is not even dying or that sick.  It gets old.  Maybe Ellie and I could get matching tattoo's saying "We don't do end of life!"  Or something like that...ha ha!

As a preface to the next few paragraphs, her new Dr. is not a member of my faith (The Church of Jesus Christ of Latter-Day Saints).  As I thought back on the Dr.'s words of "looking at the bigger picture".  I realized he was right.  But not in the way he intended.  He meant that we needed to weigh end of life and trach and quality and quantity of life.  Lots of seemingly "big picture" kinds of things. 

But I realized, the actual big picture is that Ellie is a "daughter of her Heavenly Father who loves her and she loves Him."  Yes, someday she will die.  Her body will be buried and decompose into dust.  I will miss her, but she will be free.  The really big picture is that her spirit will live on.  Her spirit will return to live with her Heavenly Father.  All the seemingly big decisions facing us right now are really not that meaningful in the long run.  Ellie's salvation is sure. 

I testify that our spirits were created by a Heavenly Father (God) and Heavenly Mother.  They love each of us individually beyond what our mortal minds can comprehend.  We learned and progressed as much as we could while we lived with our Heavenly parents. 

As spirits, we came to a time and place where we could no longer improve ourselves without a change taking place.  We made a conscious decision to follow God's plan for us.  This meant that we would come to earth and our spirits would be placed in a mortal frame, a physical body.  A body created by 2 mortals (2 human beings of flesh and blood). 

On this Earth in our physical body we would be tested an tried.  We would learn and grow.  Just like we did in  heaven before coming here.  We would make the conscious decision (just like before) whether or not we wanted to follow God's plan for us. 

We would not be perfect.  We could not be perfect, we are limited by a mortal body.  So God sent his Son (our brother) Jesus Christ to suffer and die for us, for me, for Ellie.  This was only possible because Jesus was half mortal and half Immortal.  His Mother was mortal (Mary) and his Father was immortal (God).  A mortal alone could not have accomplished the task.  And immortal alone could not have accomplished the task.  Our differences are made up by Christ's everlasting atonement and resurrection. 

Due to Christ's sacrifice, when we die, our spirits will return to live with our Heavenly Parents once again.  Where we will have the chance to learn and grow some more.  It is a pattern which God set forth.  I close this testimony in the name of Jesus Christ Amen.

***********************

Tuesday during the day they had her do a 4 hour breathing trial and then check her blood gas.  It was awesome.  Then they left her off bipap for another 2 hours and recheck blood gas.  It was awesome.  They repeated this process all day yesterday.  She was off bipap ALL DAY YESTERDAY!  And all blood gases were at HER good level.

Then because I was tired from stressing the night before and lack of sleep and crying that morning I was wiped out.  I asked the nurse and tech to get their stuff done and I was taking a 2 hour nap.  I taped a sign on the door and got in a nap.  It helped about 70%.

Tuesday night she went back on bipap all night.  But they tried a lower setting of 14/7 instead of 16/8.  Her blood gas in the morning was up (bad).  So she was not ready for those settings yet.

She has had several nights in a row now with no desats...amazing.  If we could keep that up at home, life would be sooooooooo much better.

Wed (TODAY) 4/19/17 Day 16

This morning, after a good night's sleep, I was feeling much better.

Today she has been off bipap (on Nasal canula only) all day again.  They were checking a Blood Gas at 2 PM and then again at bedtime.  I have been able to wean her down to 1/4 liter of o2, which is not much.  I tried .12 liters this morning, but she only lasted 5 minutes before dropping her sats.

She sounded a little course at noon today.  But that was right before a schedule breathing treatment(vibrating vest, nebulized meds and suctioning).  It is OK.

Tonight we are going to go back to the higher 16/8 pressure and leave her on bipap all night.  But we will stop doing breathing treatments during the night and only continue them every 4 hours during the day.  We will see how she is in the morning.

The plan for going home (I think) is she will go home on bipap at night and room air/nasal canula during the day.  We are risking recurring pneumonia like she used to have 18 months ago.  I am willing to try it.

We do several things differently now than we did 18 months ago.
We follow CF protocol (Cystic Fibrosis)...NO SHE DOES NOT HAVE CYSITC FIBROSIS...BUT SHE DOES A LOT OF THE SAME TREATMENTS.
-We sterilize everything that has touched her mouth or nose (we wash in soap and water and then use a baby bottle sterilizer)  (ie: nebulizer masks, toothbrush, bipap masks, etc...)
-After we brush her teeth, we use mouthwash to try and kill any remaining germs in her mouth.
-We use new suction supplies with every suction.
-We suction and brush teeth at the same time which causes a bigger cough to clear out lungs.

So their is a chance that we can avoid pneumonia if it was caused by dirty germs and not the secretions getting pushed down deeper into her lungs.  (We were not dirty before...but we were only using soap and water for example and not the high temp bottle sterilizer)

We won't know until we go home and try.

Here is the link to send notes to Ellie, she loves them.  https://intermountainhealthcare.org/locations/primary-childrens-hospital/hospital-information/amenities/email-a-patient/