Appreciating Home :-)

We had some very nice nurses and respiratory therapists over at Parkview LaGrange and of course Ali's amazing doctor!  They were all so very accomodating!  Her doctor told the nurses to let us feed her exactly as I normally do and to just leave me be :-)  So we continued breast milk and baby food (which they even sent up from the kitchen).  The nurses even rolled the normal hospital bed back into the room beside Ali's hospital crib so Al and I could have a more comfortable place to sleep than the reclining chair.  :-)

We even got to see one of our favorite L&D nurses Sandy (she was in the delivery room when Ali was born.)

Several of the nurses really seemed to enjoy the opportunity to learn about Ali as she is certainly not the typical patient they see in a small town hospital :-)  One nurse Lorene (sp?) is working toward her pediatric qualification said anything I could tell her about Ali and her care she would really appreciate, so we talked for quite awhile.  She asked if there was a  website I could recommend to her to learn more about trisomy 13.  I of course suggested livingwithtrisomy13.org .


I learned quite a bit myself too.  I asked the doctor how you can differentiate the sound of an upper respiratory infection and the sound of pneumonia.  He gave me a quick lesson, showing me where to listen and what to listen to and what to tune out.  Then he told me if I really want to learn, get out the stethoscope every day and listen.  One of the respiratory therapists explained that they actually see a lot of pneumonias during the summer when it is a very hot and very humid one.  I never had thought summer to be a time for pneumonia... I wonder if living in a hot humid rainforest is one of the reasons why Al spent so much time in an oxygen tent growing up.

As much as the hospital experience was a good one, it is also absolutely exhausting!  I still do most of Ali's care when she is in the hospital, the nurses usually just come in to check vitals and such.  I watch her and suction her out when necessary etc.  This time she really had her days and nights confused too.  So she was up most of both nights in the hospital and then slept through the days making me even more tired!  Since Al has his days and nights mixed up too :-) after working 3pm - 3am most nights, he stayed up with her Friday night and I got much better rest than the night before! 

Still I was so thankful to be home last night!!!!!  I don't think I ever appreciate home more than when we spend time in the hospital!  Ali seemed to agree too, she slept soooooo well last night!!!  It was so nice to be in our bedroom, in our beds, with our equipment, and our oximeter (which never false alarms as much as the model they have at the hospital!!!!)

Yesterday after coming home she was coughing a lot more again and needing suctioned out quite a bit too, but this morning when she woke up she wasn't coughing at all and her lungs sound pretty clear too.  After being up for a little while, she has been coughing some, but she looks so much better today!!

I am thanking and praising God that Alegria is doing so well and recuperating so quickly!  I know many of these children with trisomy 13 spend quite a bit of time in the hospitals with respiratory issues, and Alegria is 16 months old and this is her first hospitalization for pneumonia (and we were there less than 48 hours)!  I am hoping and praying she continues to recover quickly and she will stay healthy and strong as we prepare for her upcoming surgery!!!

Thanks for all your prayers!

Jill