Seriously?!?!?!?!?!

Two of Ellie's sisters had fevers last week.  Maybe just a little flu bug.  Ellie also got a fever at the end of last week, so I figured she had gotten it also.

Tues night she was a little sleepy and needed oxygen.  But I wasn't really worried.  She had also been having an increased heart rate, but I still wasn't too worried.

Wed morning she went to school with no oxygen (like normal) and came home on 2.5 liters (pretty high from 0).  Her nurse said she was sitting at 86 without oxygen.  She decided she needed oxygen.  She tried her at lower settings, but she really needed 2.5 liters and that was just to maintain 90-91 (not great, but acceptable).

I made an appointment with her pediatrician for 2:40. Got to Primary Children's ER at 5:30.  Got to a room at 10:10.  Got to sleep at 1:30 AM.  You gotta love hospital time!!!  (Even worse than Mormon Standard Time!)

Ellie is at Primary's AGAIN, with pneumonia AGAIN.  She also has a left ear infection.

In the ER they gave her a HUGE albuterol and another nebulized med, a steroid in her g-tube, started her on an IV antibiotic and two bags of IV fluids.

She is doing much better today.  Her heart rate is normal.  Her sats have been above 98 on 1 liter of oxygen and she is coughing up LOTS of crap (which is good).

She is awake, alert and smiling.

I have asked them to explore any possibilities as to why these pneumonias are happening so frequently.  The possibilities I see are #1) with all of her nebulized meds we are thinning her lung secretions out too much and she can't control them #2) her tone is too loose AKA she is getting too much baclofen so she can't control her secretions (saliva) #3) Her nissen (explained below) has failed and she is refluxing into her lungs #4) she is colonized with Pseudomonas which is nearly impossible to kill, so it just keeps coming back #5) medically complicated kiddos often get more fragile as they get older and just get weaker and sicker more easily.

I obviously hope that it is not #5.

I had spoken with her Comprehensive Care Dr. (Dr. over kids with complex medical needs) about a month ago about this very topic.  The plan we came up with was to wean her seizure med (onfi) and then possibly wean her baclofen.  Those meds could potentially be making her tone too loose, making her unable to control her secretions (saliva).  We have been weaning her onfi over the last month.  We have 2 more weeks until it will be gone.  We also discussed the possibility that her Nissen has failed.  A nissen is a surgery which wraps part of the stomach around the the part where the stomach and esophagus meet.  As the stomach fills with food the nissen (wrapped part of stomach) tightens and does not allow food to reflux back up.  If the nissen has failed, food could be coming up from her esophagus and going in to her lungs.

They are going to do an upper GI tomorrow to look at the nissen.  They will inject contrast (dye) into her stomach through her g tube and then take a series of x-rays to see where the dye goes.

The swallowing needs to be looked at with a swallow study and they will do that when she is not sick (which is practically  never...so we'll see).