May 20, 2010

Hectic day

I'm very late in posting today because it's been non stop with people all day.  Not fun people like visitors but yucky stuff and things I don't want to be talking about.

The pulmonologist made sure Manny was sent home with a suction machine (because he cannot swallow his saliva and they don't want it to go down his lungs), a pulse oximeter (measures the amount of oxygen in the blood ... I've been talking about that one a lot), the "vest" (which shakes the congestion loose) and oxygen. 

Next person in was the Neurologist with some really (relatively) good news.  He sees NO seizure activity!  He explained that the white matter of the brain is all diseased but if there are seizures, it shows just how far it has spread.  So it's a good sign that he isn't having seizures.  I took it as a great sign that he set an appointment with Manny in 2 months from now.  That tells me he thinks Manny will still be around in 2 months.  I cling to all the good news I can.

The pulmonologist said that kids with Leukodystrophy tend to die in 1 of 2 ways.  A slow, steady decline over time.  Or, they're on a slow decline and then get an infection and are not able to recover.  So we're going to have to figure out a way to keep him healthy (with 5 germy kids around) without having him live in a bubble (that's no way to live).  Still trying to grasp how to do that.

Mom stopped by.  That was great to see her.  Haven't talked to her since the diagnosis.  She's great because she knows ME and what I need.  She loves her grandson.  And she has a PhD in Clinical Psychology and has for the past few years, specialized in death/grief counseling.  So she will come in handy.  She is still fighting for the miracle like the rest of us!!

Then the social worker was back talking about a program that is a new program.  It's a step before hospice.  And they provide services for the entire family, not just Manny.  My first thoughts are of him right now ... I don't want him to suffer.  I know of a kid (most of us do) that at the end of her life suffered a lot.  I cannot imagine how her mother must have felt watching that, standing by so helpless.  And I have the choice to be able to let Manny just "go to sleep" peacefully.  (IF that is God's plan.)  And that sits better with my spirit. 

My second thought is of Jacob, Kaley, Sam, Luke and Zoe.  For those of you new to our family .. they're all adopted too (like Manny) and are ages 11, 10, 8, 7, and Zoe will be 5 on Tuesday.  They all have special needs as well.  I want to help THEM in all of this too.  We haven't even told the kids any of this news yet.  I wanted to wait until I got home first and had a decent night sleep before I tackled THAT conversation. 

The next visitor was the nurse who was training me on how to use the pulse ox machine, the suctioning machine and the oxygen.  I am having an "out of body" experience as I go through all this.  I'm going through the motions, I'm learning it.  I'm writing down the instructions. But I think I'm numb or something.  It's like I'm learning all this for someone else.  I can't explain it. 

But every now and then, it hits me.  All this equipment IS going home with us.  He is going to need it.  I WILL be using it.  And especially the oxygen.  I have to take this protable tank with me everywhere I go.  (There's a bigger one being delivered to home.)  And he has a HUGE tank because his volume is pretty high.  They have smaller tanks if his volume was lower.  But he has the size you see grown ups dragging around.  And I think the only time I've ever seen them is with very elderly, very sickly looking people dragging around their oxygen.  And I can't even begin to imagine incorporating this in my every day life.  I take it into Walmart with me?  When we go to the park?  And it keeps making me realize just how much my life has just changed.  And I'm resentful of it.  Not of him, but of having to do this.  I just want my baby to be healed.  Perfect.  And I have all these reminders around me that he is not ... yet. 

Finally the social worker came back to bring the packet of information on the new program. 

And it's 3pm.  They started arriving at 7:30 am and I've had at least one person in my room since then until just now.  I'm mentally, physically exhausted.  I even woke up with a fever.  They say he's "immune" to me since I've been here with him the whole time and he's on IV antibiotics.  But still ... I worry. 

Now that I've been trained and we have the equipment, they've set the discharge for tomorrow morning. They've taken him off all meds except those he'll be going home on. Just to make sure he can still breathe without them.

And as I was typing this blog, he's sleeping in a little bouncy chair near my feet facing me so I can watch him sleep.  And he woke up choking.  He looks at me with these scared little eyes, "Help me, Mama." And this time I can help him.  I am able to "fix" it and he goes back to sleep.  But I realize ... one day ... I might not be able to.  And I can't breathe. 


  1. Hi Beth,
    Thanks for taking the time to explain and share on this. I didn't realize the extent of Manny's situation. I'll meditate for him and send love his way.

  2. Oh Beth, I understand your "not being able to breathe feeling". I can barely breathe reading each update. Precious Manny. I'm just so sorry.

  3. Beth, This is all so hard and you are doing an incredible mommy job! I will keep Manny and your whole family in my thoughts. I hope you all are kept in the white light of peace.