Dec 21, 2012

If it's December, we must be in the Hospital

Life.  Over the past few weeks, I have written several blog entries.  I guess I wrote them for therapeutic purposes because I don’t feel I could/should share them.  Some of the topics have included:

Sandy Hook, gun control, Asperger’s and how my son has this disorder.
Then there are the topics of where do we go from here with Manny’s saga of breathing versus eating.
And the topics of general life. 

Suffice to say, I have experienced a lot of emotions and they’re all rolled into one.  At any moment I will be fine and then crying simultaneously. 

Today, Friday December 21, 2012 at 9:30am I was in the blood lab waiting for blood tests for Sam, Kaley and Jacob.  There was a harmless show on when there was a Special Report.  It was a National Moment of Silence.  One week ago at that moment was the Sandy Hook incident.  (You have to understand, I don’t watch the news.  I can’t.  My kids are all too young and vulnerable to hear the news on a regular basis.  It’s all about this murder, that rape, those break ins … if you watch that, you think there are only bad guys in the world.) I had no clue this was scheduled.  I was caught quite off guard. 

A bell rang out and then a picture of one of the 26 people was shown with their name and age.  About 6 seconds later, another was shown.  I didn’t get past the second name before I was about to be in a puddle of my own tears.  I tried not to fall apart in front of the kids.  And then I looked down the row.  They were moved too. 

As a mother, I just cannot comprehend.  I know that my child is sick.  I know live with the possibility of a negative outcome … often.  But these people sent their kids that day to first grade, kissed them and said, “See you later” never imagining the truth:  they wouldn’t. 

Meanwhile, Manny has been healthy!  We have stopped all feeds and life is great again.  No congestion, no desats, no breathing issues.  GREAT! 

Wednesday we had labs drawn.  Thursday we got the results.  They were HORRIBLE.  They were news of an impending issue. 

Specifically, for the past two weeks, his liver enzymes have been basically normal.  About 60-80.  And this week, one is almost 500 and the other almost 700.  Highest EVER. 

What does this mean?  One piece of info is good/great news.  When someone is on TPN longterm, a huge concern is liver damage/failure.  This is demonstrated partly due to elevated liver enzymes.  His were elevated so people assumed it was due to chronic TPN use.  BUT the fact that the past two weeks the numbers went to basically normal??  That PROVES TPN is not the culprit!!  If it were, the numbers would stay high and increase.  So this is great news.  His liver is not permanently damaged.  He is NOT in liver failure.  Yippee. 

But why the jump from 60 to 700 in a week?  Shows his body is fighting something.  He had no other symptoms. 

Thursday night all was fine until 3am and he was hot.  101.4 temp.  By 6am it was 102.8.  I knew right then and there we’d be in the hospital by night.  (sigh)

Meanwhile, remember how he had a blood transfusion a few weeks ago?  His hemoglobin should have gone up to about 11.5 or higher (his pattern).  But this time it hit 10.4 and then right back to 9.5.  We went to the Hematologist last week and discussed the issue.  We determined iron tests should be done.  So along with the other labs, we did those this Wednesday. 

Those results showed on Thursday that he is at very very low levels of iron.  He will need IV infusions. 

So tonight as I write this … we’re in the hospital again.  He is playing in the wheelchair.  He’s quite content here.  He would rather be home of course but we make it pleasant and he’s happy.  Me?  I’m having a hard time with this admission.  Why?  We had plans.  We were going to have a formal dinner at our house (decorations partly put up, food bought, etc.).  Today was the kids’ last day of school before winter break and we had plans.  Fun things planned.  It’s so very very hard to have to tell them that all those plans are on hold and I’m headed back to the hospital.  They handle it well considering … but they have all sacrificed so much.  They have given up MUCH MUCH MUCH.  There has been a price to pay. 

I won’t go into the details of the price that has had to be paid.  But it’s a lot.  The price has been high on all of us in different ways. 

And yet, the price is worth it at the same time.  Manny.  His life.  His quality of life.  He’s worth it. 

As I type this his fever has just hit almost 103 again.  But when Doc asked him how he’s doing he said, “I good.”  And everyone laughed.  He is truly one of the strongest people I know.  Which I find incredibly ironic. 

Kaley decided not to come with us this time.  Most of me is thrilled with that.  Don’t get me wrong.  I LOVE having her here.  My life is sooo much easier with her here.  And she can help tag team with me in helping keep Manny entertained.  But as a Mom, I want her to LIVE.  I want her to be a kid.  To have fun.  To be at home playing games and running around with her siblings. 

So how long will we be here?  Depends on several factors.  1) Must be fever free for 24 hours.  And currently he has a fever.  2) His liver enzymes need to be closer to his baseline of say 150’s.  3) He has to be 48 hours negative on his blood cultures and they were just taken tonight. 4) A viral panel was taken and depends on what that turns out as to if we think we can manage the symptoms at home or not.  So if all goes well, Monday is a possibility. 

But if there are any issues with any of the aforementioned factors, all bets are off. 

I’ve discovered that once I get here, I get into “Hospital Mode” and I find a way to go with the flow.  So for now, I will just ride it out. 

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