Our Sick Girl

Selah had a rough night, had to be suctioned often, her blood pressure was up enough to need a blood pressure med she has not taken in months!  She also had a big poop....The nurse gave her some valium also in the early morning.  Then she seemed to be ok till after she got her morning fish oil.  She threw most of it up.  Then a little later she threw up some water the nurse had given her.  She also started running a low grade temp.  She managed to keep the Tylenol down and has kept all her meds down since about noon. WHEW! 

I called both her pediatrician and her pulmonologist to see if we should take her in but we all were in agreement that we'd keep her home IF she could hold down her meds.  We don't want to expose her to something in the hospital if we can help it. 

Tonight we are just giving her Pedialyte   in her gtube feeds rather than her formula, in hopes of not upsetting her tummy!  So far so good!

We all think she is having a bit of a surge of her trachea infection.  She is colonized and that is why she gets Tobi (inhaled antibodic- 28 days on 28 days off)  She is supposed to start it on Monday....BUT this is the drug we fight MONTHLY with our insurance company.  It's supposed to be delivered on Monday but my bet is it won't come.  Our insurance requires it as a "specialty" drug to come through their mail order company.  WHAT a freaking pain! If we could just get it, we could start her a couple of days early and clear this up.  As it is, I can only hope she can make it through the weekend without having to go to the hospital.  I called the on call pulmonologist tonight.  She was able to call in a med we can use until we get the Tobi on Monday.  Hopefully that will help. 

Please keep Selah in your prayers.  She doesn't seem to be too upset or uncomfortable thank goodness but we are not feeling too good about all that is going on with her.  Times like this make me very glad we have full time nursing! 

This picture is from Thursday during her time with her teacher. 

 

she was really paying attention to everything.

 

Thanks for your prayers!!!!!!