Overnight Hospital Stay 1/2/12-/1/3/12

This is a very long and wordy post so I apologize in advance!  It's really hard to type everything out while attempting to make sense so if it doesn't I'm sorry!!

New Year's Day was a very relaxing day for Addy.  She laid around watching lots of movies and trying to catch back up on her sleep from New Year's Eve.  It was a pretty normal day with no issues or concerns!  She went to bed great and slept really good until around 1:30 when her pulse ox alarm kept going off.  Her oxygen (o2) numbers would drop to 92 (92 is when the alarm will sound) but jump right back up to normal readings.  Around 4:00am they kept drooping and staying down so we gave her some oxygen to see if that would help.  The 3 liters of oxygen we were giving her by 7-7:30 was only keeping her between 92-95 so we knew something wasn't right.  We called her pediatrician Dr. Nelson and she said to go ahead and take her to the Emergency Room since she was requiring oxygen (in a perfect world we would have bypassed the ER and gone to her Pulmonology Dr but their office was closed since Monday was considered a Holiday). 

James had gotten up that morning and went to work so by the time I did a round of chest pt on Addy while we waited for James to get home to take her to the ER her O2 numbers were back up to normal with out oxygen.  We decided to go ahead and take her in so they could do a chest x-ray to rule out everything.  Both Dr. Nelson and Dr. Tamez (her pulmo who was actually on called) had called ahead to the ER to let them know we were coming.  They took us right back to a room but then we had to wait FOREVER for the doctor to see her.  Thank goodness it wasn't a true emergency!!!!  During our wait Addy took a nice long nap which was definitely needed!  The X-Ray came back normal and since the ER doctor had no clue about Addy or SMA he decided to have the PICU come down to examine her.  We decided with the PICU doctor to do a strep test (because she had a weird rash on her chest) and if that came back positive would take her home but if it came back negative Addy would stay the night in the PICU to be monitored in case she had a bad night like before).  The strep test came back negative so we headed up to the PICU for a quick over night stay.  James and I made it clear we didn't want any IV's or anything since it was only to monitor her for the night.  Once she was on the PICU's monitor's we saw that her O2 was registering at 100% which never happens on our home equipment.  We hooked her up to her home pulse ox and soon realized thats ours was reading at least 5 digits lower then the hospital machine which isn't good.  We started wondering if maybe the night before the low # were the machine and not Addy.  We knew we had to get a new machine! She had a great evening in the PICU and enjoyed seeing some of her favorite PICU staff.  They gave her some melatonin that night to help her relax and she was sound asleep with in 30 minutes of taking it and didn't wake up until the next morning!  The plan for the next day was to wait until her DME could bring a new pulse ox.  They brought one up around lunch time but it was no better..reading the same!  We had to wait a few more hours so they could go back to their office to get a different model.  When they got back that one was reading a little better but it wasn't good enough for James and I!  After talking to the PICU doctor we decided we needed a completely different brand so he wrote us a script to order a new one from Addy's 2nd DME office and then it was time to go home.  It took us a while to get out of the PICU due to a couple emergencies (other patients) but we finally made it home around 6:30 Tuesday night!

We just found out on Friday that Addy's new Pulse OX machine has been approved by Medicaid and has been ordered! We were so excited and can't wait to receive it!!!

hanging out in the ER

in the PICU