We Could Have Built An Ark

Tomorrow, after 21 nights and 22 days we will be going home. Since May 8th, 40 nights spent in the hospital. We could have built an ark. 

Mini Mayhem will have to be monitored 24/7 by her pulse oximeter which shows her heart rate and oxygenation level and will alarm if either goes outside her set parameters.

They were unable to do the 24 hour pH test today. While inserting the tube through her nose, there was a bit of resistance but then it went in fine. I did tell them she had a tonsillectomy and adenoidectomy on the 19th and ENT had cleared her for this test. While they were calling for X-ray to come check placement MM pulled the tube out some. They tried to advance it back in place but it wasn’t “easy” so they took it out and called the GI doc who said don’t try again. They didn’t want to cause any damage while she’s still healing. With nothing more to do, we are headed home tomorrow.

**UPDATE 10:40 PM** Guess who has a temp of 100.4!!! I asked for labs in the morning to check on Karla and for a CBC. I would have asked for them tonight, but sleep meds had already been given and I wasn't going to wake her up for that.

**UPDATE 8/29 11:00 AM** No fever this morning and labs looked good with exception to her sodium being low. I feel it is because she did not get her water from yesterday afternoon until last night along with her overnight water (1700 mL vs 1120 mL). We got behind yesterday because of the pH test we thought she would have. She just got her morning dose of "salt", they are going to give her an extra, let her get her 2pm dose and recheck labs at 3 PM. If her sodium is ok then, WE GO HOME!

(I do not own rights to this music.)

Ironically, I came across this on Facebook this evening.

I think a mother’s love is stronger then medicine…

And last night while I waited for her dad to pull the car around at the hospital I was reminded of this.

Because what happens when doctors can’t help?

What happens when a collection of symptoms doesn’t equal a clear diagnosis?

One of the hardest parts of medically complex parenting is having to endure when the medical system becomes irrelevant.

When we have run all the tests

When we have tried all the meds

When we have seen all the specialists

And nothing works.

Having a child with an incredibly rare diagnosis means that 2+2 hardly ever equal 4.

Yesterday on day 12 of a difficult new development, after unsuccessfully seeing two of her specialist teams, I cracked and finally went to the ER in hopes of finding a new treatable issue .

And after consulting with 4 doctors, running a bunch of tests and spending hours in a small room with a very unhappy and uncomfortable child we were given empathic smiles, well wishes and discharge papers.

Because if an issue can’t be translated into abnormal test results … then it doesn’t exist.

I won’t even say the medical system failed us, because it didn’t .

It did what it is designed to do.

And this is why a mother’s love is stronger than any medicine will ever be.

Because when medicine fails…

We comfort.

We treat.

We fight.

We acknowledge.

We keep going.

We endure.

I don’t need to see test results to know deep in my bones when something is wrong with my child.

A treatable issue would have been nice..

But as long as she’s fighting something ….

Then so am I. 

Written by: Krystal Anderson