WANTED: Mary Poppins R.N.

This has been quite the holiday week. Where to start? My nurse, Denise called me on the Sunday night before Thanksgiving to tell me her daughter had been in the hospital all weekend and she wouldn't be in on Monday because she had to take care of her granddaughter. Monday turned into Tuesday, and Tuesday to Wednesday. Wednesday Amelia woke up with lots of secretions and throughout the day I monitored her temp. At 4pm, while her PT was working with her, she hit the wall and I got a call from Nestor that our PT was only going to do a half hour with Amelia because she wasn't doing well. I raced home from the pharmacy -- my one outing that whole week -- and sure enough, Amelia was in as much respiratory distress as she's ever been. We gave her a breathing treatment as her temperature climbed to 103.8 and her breathing got worse and worse. I gave her tylenol and motrin, called the doctor and we put on the Backyardigans for her. Her fever finally broke and she was drenched. Wouldn't you know it? She started to laugh at her cartoons and Nestor and I just kept putting on one after the other, after the other for hours.

The doctor called back -- not our regular ped, but one we had spoken to before. I told her the fever had broken, but we still had major concerns -- especially since the holiday was upon us and the doctor in the office had never met Amelia before. She said if another fever spiked, to bring her in on Friday.

I kept Amelia on tylenol and motrin for the next 24 hours, and although I was ready (albeit totally depressed to not be with our family)to stay home with our girl, Nestor convinced me that she was going to be sick here or there and we really didn't have to go for long, etc. Spike was in town too and I knew it would be a wonderful gathering. Also, Nestor's aunt, Titi Lu, who had never met Amelia (she is named after Titi Lu's mother, Amelia) was at his sister's place. We packed up the nebulizer, suctioning unit and everything else I could pack in, and we headed off to Evelyn and Carlo's for a wonderful Thanksgiving feast. Titi Lu and Grandma loved talking to Amelia and playing with her feet while she sat in the stroller. We explained that she was sick and not feeling like being held -- thankfully they understood. By 5pm, we needed to head out as Amelia's fever had been climbing all afternoon and we wanted to get her home. Spike came back and hung out for awhile, then Nestor took him home to his Mom's.


Friday we took Amelia to the Pediatrician, one whom we had never met before, but informed us she was "aware" of Amelia and her needs. She listened and looked and decided we should keep giving her treatments but hold off on antibiotics. She said if Amelia's fever spiked all weekend we should bring her in Monday morning and they would send us over to NYU for a chest x-ray. She also advised us not to go to Baltimore, as was our plan and just to hang locally.

Nestor again, I love him so much, could see how much this stressed me out -- as we had a very sick baby, I was totally sleep deprived and no nurse. Just the two of us against the world (my words!). He left it to me but encouraged the trip to MD. We left that afternoon and spent Friday thru Tuesday AM with my wonderful family down in Baltimore. We called our Pediatrician in Balto, who I've known my entire life(I was in playgroup with his daughter) friday night and he immediately put her on Zithromax. He couldn't understand why, with all of Amelia's high risks, anyone would wait for her to get pneumonia and then send her for a chest x-ray. Within 24 hours hse did a complete turn-around and was well on her way back toher old self. Anyway.....our weekend was really nice. Hanging out with my folks, sister, brother in law, cousins, nephew and niece -- so wonderful being surrounded by family! We were going to head back on Monday AM, but I got a call on Sunday that our nurse was going to take "Personal Time" off. Not available this week at all -- and not sure about the long term.

The agency lined up a new nurse for us for Tuesday, so I canceled her therapies for Monday and Tuesday AM and we came back that afternoon. You'd think this would all be a relief --- but no. Having a new nurse is really stressful -- and sometimes more stressful than not having one. Long story short -- I gave it 3 days and after two hours today, I told her it wasn't working out and I didn't think we were a good fit. I called the Agency and they informed me that they believe Denise is coming back on Monday. YAY!!!!!! I am soooooo happy! I know she must have been going thru some really big personal stuff to leave us like that. She's a really good person who has a tremendous work ethic and responsibility toward her patients. Even Nestor, who I think is a VERY good judge of character thinks this -- and is also very, very happy she is coming back. So keep your fingers crossed for us.

Today we had an Opthomalogy appt and we were informed that the patching we've been doing has changed the pattern of her eye muscles and now, instead of just patching her left eye for 2 hrs a day, we now have to alternate patching her eye's each day -- with Sundays off. So that's good, I guess. She's responding to the therapy.

Tomorrow we're off to meet with NYU's genetics dept to re investigate Amelia's mysterious challenges and what caused it all. Genetics had signed off on her in the first 10 hours of her life, but it's not uncommon to revisit these places as the child gets older. So, we'll see -- I still don't think it's anything genetic -- but I guess we'll go down that road again just to be sure.

And this weekend we're off to the house. Happy trails all and thanks for checking in to my long winded tale.