May 17, 2012

Happy 2 year anniversary

Life is never dull.

Last week, Sam (our 10 year old) got a fever, no other real symptoms.  Lasted 5 days.  About 3 days in, Jacob (13) ditto.  Kept doing our darndest not to let the rest of them get it, but especially Manny. 

Why?  Because when he gets a tiny thing, he gets BIG sick.  And his labs are showing that his white blood cells and his red blood cells are way low, which leaves him vulnerable. 

Meanwhile, several people are looking at the labs and are concerned but it is not clear as to who is "in charge" of the case.  Why is this concerning?  His levels are below the level that would need a blood transfusion.  Now this is a matter of judgment as some people can handle lower hemoglobin levels than others.  But the problem is when the person becomes symptomatic. 

So here's a quick education on hemoglobin basically.  It is what carries the oxygen through the blood.  So the lower your hemoglobin, the lower the oxygen in your cells.  A child his age should be around 14. Most doctors like to keep it above 10.  Transfusions run their own risks.  About 10-20 years ago, the rule of thumb "transfusion trigger" was 10 for the hemoglobin.  And 30 for the hematocrit.  (His hematocrit is 23.8). Now the thought is below 8 for sure.  In the 8's if the person is symptomatic.  

What symptoms?  Well, any kind of breathing issue.  (High respiratory rate, low oxygen saturation, etc.)  

Manny's oxygen saturation is normally about 98-100.  Even a couple of nights ago, this was what he was running.  Last night, he was hitting the low 80's.  So yes, his breathing is being affected.  

Thankfully, this morning I had an appointment with his Pulmonologist.  He was concerned.  Concerned enough that he stepped out of the room and called his friend, the Hematologist.  They set an appointment for Monday.  All this was done before he came back into the room.  

I then got Manny into the car and when I did, he felt hot.  Very hot.  And I knew what this meant... a trip to the ER at a minimum (for blood cultures ... remember, the rule is: if you have a central line and a fever over 100.4, you have to get a blood culture... and then it's up to the physician if they admit and treat or not).  But I also knew that given his strange labs, they'd admit him.  

They did.  I called the pediatrician.  She called the hospitalist.  3 minutes later I got a call from the pediatrician that Manny would have a bed ready when we got there.  

I packed the last minute items.  (See, I keep a bag packed but the last minute things have to be added later like the phone charger, laptop, etc.) 

I explained to the other kids what was happening.  (that's always a hard conversation).  We prayed as a family.  

Kaley, Manny and I headed to the hospital.  The whole way (abotu 45 minutes), he was passing out and retching alternating.  He said, "I not OK."  and "I sick".  

Got to the floor and he perked up a bit to see all his peeps.  They always have the same reaction, "Hey!!  Nice to see y... Oh, no!"   They love seeing us but hate that it's because he's sick again. 

Doc came in and I said, "Happy Anniversary!"  He was like, "Of what?"  It was exactly 2 years ago that I was admitted to the hospital for the first time.  He wasn't sure if Manny would survive the night. So to see him TWO YEARS later, it's a blessing.  The three of us have been through a LOT together! 

So I tell him the symptoms ... High fever, lethargic, combined with erratic breathing, high heart rate and bad labs. (Specifically his WBC is 5.1, RBC 3.0, HGB 8.0, HCT 23.8 and all are dropping.)

Doc is going to call in a whole slew of specialists for him. 
Hematology for all his wacko labs.
GI for his TPN needs, etc
Cardiology for his 
"innocent murmur" that is "different" this time I'm told,
Ultrasound for his liver that is tender.
Neurology/MD Doc for a consult about a possible progression of his Muscular Dystrophy symptoms
He also ordered tons of bloodwork, a chest xray, a viral panel, a strep test, etc. etc.  


What does this all say to me?  Doc is concerned too.  

We got here about 5pm and he was begging to sleep.  He slept off and on until about 7:30 when he started screaming! He was burning up again too.  Tylenol.  Nothing would comfort him.  Finally, it kicked in.  Then he is now wide awake as I'm ready to crash... but I know there are more treatments and tests to be done still tonight.  More invasive tests, more blood to be drawn, meds to give, etc. etc.  So I hunker down for a looooong night. 

We've only just begun. 


Yes, Kaley is with us.  (She is a gift!  She was soooo excited to come back ... uh, she must have a boring life if this is fun! LOL) 

And me?  Somewhere between the lab test, the pulmonologist visit and driving to the hospital, I lost a filling in one of my teeth.  Thankfully it's one in back so only I will notice.  But it hurts.  And it's sharp and keeps cutting my tongue if I talk.  (Guess who won't be talking much the next few days?) 

Like I said, it's never dull around here. 

1 comment:

  1. Becky Browder NeustadtMay 17, 2012 at 10:48 PM

    Oh I would so love to wish you some dull. And some rest. Definitely sending love - xoxo

    ReplyDelete