4-2-13 Ally hospital update — 10 pm

After some trouble in the morning, most of Ally’s day went well.  She napped well with low, almost normal heartrate and so we took a break from giving her motrin and tylenol.  Unfortunately at the end of her 3:30/4 treatment, she had some big desats to the 70s (out of 100) for oxygen  again and high heartrate of 160s for a few hours.  We had to use quite a bit of oxygen to get her breathing well and keep her oxygen up.  Then after an additional nebulizer/IPV treatment, tylenol AND motrin, she stabalized again.  I must have jinks things by talking about going home sooner than later.

Ally has done well since then (knock on wood) and just finished her 8/9 pm breathing treatment.  We are lucky to have a GREAT respiratory therapist that knows Ally well from the past and he is on tonight and tomorrow.  Hopefully we will have the same day therapist too.  For nursing, we have additional NEW nurses to Ally, but there are two of them (since one is learning) and they are very nice.  Just still hoping for as much consistency as possible, so I can rest as much as possible and things are as stable, consistent and less scary for Ally (and me).

Not sure of the time frame when we will be going home.  Every time I think it might be the next day, she has bigger breathing complications and even some fevers of 100 one point today.  We did some additional labs, but those haven’t come back yet.  We are down to treatment every 4 hours, but that is still 6 times a day and lots of monitoring.  I want to be closer to our baseline of 2-3 treatments a day before going home and make sure nothing more is developing. Praying, maybe Thursday, but Ally will lead the way.  It could maybe even be Wednesday night, but again Ally will lead the way.  At home we only have day nursing during M-F, so I don’t want to go home and get behind on things.  This is her first sick hospitalization since her trach (almost 3 years ago) and I want to make sure we are doing the best we can to get her over this illness safely.

Thanks again for the prayers and well wishes!!!

PS — Don’t forget about our MDA Muscle Walk that is in 4 days.  We are only $94 away from our team goal of $1000.  The link to donate is  http://www2.mda.org/site/TR/Walk/55-637-ChicagoDistrict?pg=team&fr_id=4394&team_id=14985   THANK YOU AGAIN!!!!