Happy New Year!

Zadie's 2012 consisted of too many ER visits, five bouts of pneumonia, one very nasty case of RSV, two surgeries and a lot of learning and growing and fun!  We got great news when I checked the mail on Christmas Day (mail that had been delivered the day before) and got the letter from the insurance company that our second level appeal had been approved and Zadie was now back to 16 hours a day, 7 days a week of private duty nursing.  We are in the process of trying to get the shifts staffed.  I look forward to sleeping in a real bed, since my air mattress seems to be losing air quicker and quicker every night.  It might have to do with the 90 pound dog that likes to join me sometimes or the cats that like to jump around on it.  I also look forward to Zadie being able to be home during the day, rather than coming to daycare with me and Jonathan.  It's nice for her to get some socialization, and it's really nice to see her all day, but her health is more important right now, and I'm afraid that she will have a very rough winter if she continues to come with us.  

Zadie learned all sorts of stuff in 2012.  She learned to walk and sign and she even gained back her voice!  It's not 100%, but she can get very LOUD when she wants to express herself.  She can also say mama and baba meaningfully.  She got her palate repaired back in May, and can drink like a champion.  

By 2014, I would love it if Zadie could lose her trach and her Gtube.  I won't get my hopes up or put too much pressure on anyone, but it would be great.  For now, she is happy and healthy and that's all we can ask for.  

RSV & another ER visit

Zadie got a fever out of nowhere last Wednesday.  She had no other symptoms other than excessive sleepiness.  I gave her Tylenol and it went away, but I took her to the pediatrician that day, since pneumonia always comes on fast and is a constant concern.  He listened to her lungs and said they sounded good.  He said it was probably just a virus, but he put her on antibiotics as a precaution so that whatever it was stayed out of her lungs.

She did ok the next day, but then spiked another, higher fever that night, and again on Friday.  She wasn't really eating anything, so I was making sure that she was getting plenty of fluids.  Over the weekend, she was feeling very yucky.  Her breathing was very fast and she was requiring oxygen to keep her saturation levels up during the day as well as at night.  I considered calling the doctor, but I knew that any on call doctor would have us go to the hospital, and most likely, the hospital would want to admit her, and I really wanted to avoid an admission!  So we rode it out for the weekend.  She barely moved from the couch the whole weekend.  She kept spiking fevers, and if we tried to give her anything but Pedialyte or juice, she'd vomit it up.

Monday morning, I called her pediatrician and brought her in that day.  I felt nauseous, because I was positive that he was going to send us to the ER, at least for a chest xray.  And because she had just been in the ER three weeks earlier with pneumonia, I was afraid she was definitely going to be admitted.  I was right about the ER trip, because the ped suspected RSV.  We went right there, and saw our old buddy, Dr. Robbie, the ER doc we've seen way too many times!  Right away, he said she didn't look so bad, especially compared to other times he's seen her, and her pediatrician is just nervous.  He said unless something crazy came up, he wasn't going to admit her.  Huge relief!

The test results confirmed it was RSV, and the chest xray looked normal.  Since RSV is a virus, there's no medication for it, and it just needs to run it's course.  He said it could last 7-10 days, and it's possible that it started last Wednesday with that first fever.

Today was slightly better.  Zadie still slept a LOT, but she did eat a little bit.  She also was smiling more than we've seen in days.  Her breathing was closer to normal, and she didn't need any oxygen.

RSV is a very nasty bug.  At one of our appointments at CHOP, I met a mom and her trached son in the waiting room.  Her son had a trach because of a bad bout of RSV when he was a baby.  Because it's so serious, there is a shot for it, Synagis, that is only given to high risk babies under 2.  None of Zadie's doctors ever suggested we try to get approved for it, for some reason, but the fact that she has a trach makes her a candidate.  I'm not sure if it's worth it to try to get it at this point, but I will ask.

My main goal for the next few months is to keep her as healthy as possible.  We need to be working on the Passy Muir Valve in order to move on to the cap in order to hopefully lose the trach in the spring!  If she's sick, we can't move forward.  Short term goal is to get her feeling good enough to sit on Santa's lap!