Oct 23, 2012

Anemia and beyond

Anemia … the continuing saga. 

I will try to summarize as succinctly as possible this quite complex medical issue Manny has going. 

Last October he went on TPN.  December he got very ill, went into septic shock and had to have his first blood transfusions.  February he got very ill with the gallbladder that died and was leaking and had to have his next set of transfusions.

In May his iron levels we so low they ended up giving him another set of transfusions along with his first set of IV iron. 

So if you’re doing the math, that’s every 2-3 months that he’s needing it. 

October of this year his hemoglobin and all the red blood cells are starting to tank again.  He’s not symptomatic (yet) but we’re close to where he became symptomatic in May.  Rather than waiting until he crashes like they did in May, I asked if we could do a preemptive strike.  They gave him two days of IV iron on Thursday and Friday.  (It's the first time we've given iron only and not a transfusion too.  A good experiment to see

So … Monday iron low.
Thursday, Friday … IV iron given
Monday … iron even lower than last week. 

Now the mystery part comes in.  What the heck is going on? 

Possibilities include:  Not enough iron given.  Not the right type of iron given. He may need the actual blood components and not just the iron.  He may not have iron deficiency but instead something like hemolytic anemia.  Or he might have iron deficiency anemia PLUS something else.  He also might have something called Anemia of Chronic Diseases on top of other conditions. 

Bottom line:  This isn’t working and I am glad I have a Hematologist on the case!  We need to get this straightened out soon!  Last time he was this low … he had about 1 week before he crashed. 

Meanwhile, his White Blood Cells (infection fighters) are very very low.  In other words “Sitting Duck”. 

Now at the exact same moment in time, I have several kids who are sick in the house.  We just keep getting hit with one thing after another. I even hired someone to come clean/sterilize the germs!  And I have now bought stock in Lysol wipes it seems! 

Dan got what we thought was allergies 2 weeks ago and then it settled in his lungs.  It was almost a week and a half before any one else had symptoms so we were hopeful.  Then Sam.  Luke.  Kaley.  Same order of events … sore throat, then low grade fever followed by a horrible cough that’s deep in the chest. 

So imagine my horror when yesterday Manny said, “Ow, my neck!”  I asked him to point to where it hurt and he pointed to his throat!  Noooo!  And tonight?  Temp is 100.4

According to our old criteria we’d already have to go in.  But I got a bit of leeway from Doc.  He and I agreed on a new set of rules.  We do an automatic admission to the hospital if:  100.4 for 12 hours or more; if he’s acting sick and has 100.4 even once; or one time of 101 or above. 

So tonight I took his temp and it’s 100.4.  If it goes up over night we have to go in.  If it’s still up in the morning, I will call for a room. 

Meanwhile, as I did his bedtime routine, I felt his neck and there are swollen lymph nodes.  I looked in the back of the throat and it’s definitely swollen and red.  Nothing that looks like strep … but it could be.  The back of the throat is also pooling with saliva like he’s not wanting to swallow.  Having to do lots of extra suctioning.  So … either way we will be headed to either the Primary in the morning or the hospital (depending on the temperature). 

And finally for the news of the day … we went to the GI today.  I was very prepared with all sorts of labs, charts, summaries, questions, etc. All neatly organized and typed out.  I was able to present the history, current situation and concerns/questions very thoroughly to the ARNP and she gave the summary version to the Doctor.  (I am happy with that system as the ARNPs are the main ones we end up dealing with anyway.)

Bottom line … we will start on a new formula (one we haven’t tried before) at 10cc’s per hour.  We will return in 2 weeks with the verdict.  No adjusting it higher/faster until then but we are allowed to stop it if it doesn’t go well.  So … I’m good with the plan. 


1 comment:

  1. Praying the iron starts working. Praying for new formula! What did they put him on? and praying the fever goes as well as his poor sore throat. I am right there with him on the throat and the chest cold and cough :( Try and get some rest while you can in case things change and you dont have your bed. Big hugs