the 100% Mommy

by Debra Wallace

When the baby gets fussy, he is usually thrust at me as someone says, "the baby needs you."  He sees me, stops crying, and calms down to rest in blissful peace while I nurse him to sleep.  This is why most moms have more than one child.  A sleeping contended baby makes us feel appreciated, whole, cared for, important, needed, and irreplaceable.

In Christian's life, someone else gets him ready for school and puts him on a bus, the very unhappy bus driver and matron drive him to school, at least 5 school staff work with him throughout his day, then another nurse takes him off the bus and usually puts him to bed.  Where is the mommy in that?

If it were my choice, I would do it all.  He would be woven into the fabric of our day and it would be hard to tease him apart.  Instead, it's like having an alternate universe where there are all sorts of opinions from how fussy he is, how he's sleeping, how his teeth should be brushed, what kind of hoyer sling should be used, how supplies should be labeled, what types of skills he still has, and what types of medications he should be on.  These things are my mommy domain, which has been trampled underfoot.

I love our support people - I do, and I can't do it by myself - I tried.  

Here are some of the things that are cute when you are a baby and not cute when you are 9:
* Wearing a diaper
* Drooling
* Being in a stroller
* Being carried
* Fussing
* Having someone else brush your teeth

One of the happiest days for me in this whole disease process was surrendering to the school bus and choosing to focus on the kids that needed me specifically.  Hiring our first private duty nurses was even better.  And of course, the nurses and school staff need to have opinions on these things and they need to share them with me or it would be negligent and I would be angry.

And yet this boundary and sense of space wounds me deeply.  It is an irreconcilable hole in my heart not directed at anyone or anything specifically because nothing about it can be changed, but just something that is intensely painful.  I want to be the 100% mommy, and I can't be. 

On Salt Water

by Debra Wallace

Christian is tube fed and somewhere along the line a dietitian determined that he didn't have enough sodium in his formula so it needed to be added.  They gave us a bottle of concentrated salt water and we went home.  Then it ran out.

This bottle of salt water was unique.  Not only did it contain both salt and water, but it was created by someone with an advanced degree, and it cost $40 a month.  

Even though I don't personally pay for it, I also don't feel comfortable wasting our collective money.  So I asked GastroEnterology how to mix our own.  They sent us instructions for mixing "normal saline."  The problem is that we would have had to give him a gallon a day or something.  Making, mixing, storing... it's not practical.

So Jason and his chemical engineering self figured out how much salt we needed in how much water and off we went.

Now, nurses cannot administer "medications" in an unlabeled bottle or without doctor's orders.  How this is a medication I'm not sure, but I guess because it could be mixed in a pharmacy and because it's given through a hole in one's stomach, that makes it a medication.  

You might think that acquiring salt water mixed by a pharmacist in a labeled bottle would be easy.  You may have overlooked the fact that not just any pharmacy will mix this specialized compound because it does not have a medication number in the medication number database.  Only a hospital pharmacy will attempt such a feat.  And Medicaid pays $40 for it.

Jason and I see a huge business opportunity here.  We'll be opening a salt water production facility here in our home.  Should you find yourself in need of any concentration of salt water just call 555-SALT and we'll be happy to assist you.

The Sky is Falling

by Debra Wallace

It's hard to escape this fact.  The anxiety produced when a child's health is of the terminal variety is unlike any other.  Medical professionals and parents alike are supposed to fix problems - all of them.

Christian is having trouble managing his secretions (spit) and is coughing a lot.  The options are:

1.  Give saliva reducing meds

2.  Remove his salivary glands.

3.  Give him a tracheostomy 

4.  Inject botox into his salivary glands

5.  Pretend to be a dentist

Medicine in general has an infinite number of interventions, but in our case they are typically not recommended even if we wanted them.  As I've revisited why they are worth avoiding, I'm really floored by the comprehensive nature of this disease.  Sure you can remove the salivary glands, but it doesn't really help because there's too much soft tissue in the throat (caused by the disease process).  Surgical options are super invasive and high risk with not much payout.  Medications don't help much because swallowing is just really important if you'd like to wear no more than one shirt a day.  So you get awarded a suction machine.  You're jealous, I know.

Suction machines are not as gross as rectal medications, but they are up there.  Not the suction part so much as cleaning the thing.  I pretty much never do (sorry nurses, I love you all!).  Of course, the container is clear.  Some day, I'm going to manufacture opaque ones and they will be mad popular with the parents.  Nurses are more or less immune to the grossness of body fluids (and the hideousness of medical equipment).

In any case, a whole lot of cortisol has already flown through the brains of the involved caretakers over the color of Christian's snot, which he also cannot wipe on his sleeves or sniffle back in.  So it is proudly displayed on his face in order to evoke anxious responses for all involved.

I'm not one to get excited about these things, but when the sky is falling, it's hard not to run.

Dr. K is coming on Thursday for her first home visit for Christian.  While I love her dearly, this is not a good thing.  It more or less signals the beginning of the end - the end being the smooth sailing of April 2013-now.  My cortisol levels are more or less a response to the impending doom I sense coming my way.  I do not want to do this again.