Home Again, Home Again

After 3 failed IV attempts. Don't worry, we had 12 more.

We're home! Ohmygoodness, that was crazy. Let's just say, Charlotte will never be a Red Cross Blood Donor.

We were admitted around 9:00 PM PST last night. 10 hours, A NICU nurse, 3 PICU nurses, a PICU attending, 2 attending anesthesiologists, and some sedation later, Charlotte finally had an IV placed. It took an hour after sedation to get a line in. When they finally were successful, two doctors placed IV's at the same time, so they left both of them in. By the time they wheeled Charlotte from the sedation room down the hall to her room in the PICU, one had already blown. This girl does not like IV's.

Once we got the line in, we waited for another 4 or 5 hours before IR could fit us into their schedule. At this hospital, IR uses sedation when placing J-tubes. At CHOP, they just told the kids to suck it up. (I'm sure they did it as nicely as possible). Having gone through both experiences, I'm not certain that the trauma from placing an IV was worth the lack of trauma during the J-tube placement. At least that only lasts about 15 minutes. The IV ordeal was drawn out over several hours, and Miss Charlotte was convinced we were trying to kill her every time I put her on the bed.

However, it's all over now. Except for when it has to be replaced in three months. I think I might schedule a vacation conveniently at that time. {Peter doesn't read the blog, he'll never know :)}

Thanks for all the texts and messages of support. We know you are all probably burned out on this journey and our neediness.

Don't worry, so are we :)

We're Home!

Phew. The past two weeks have really kicked my trash. CA, on the other hand, has handled things just fine.

So fine, in fact, that she is now 100% oxygen free. Who knew that all she needed was a nice sea breeze and high taxes?

Charlotte's echo looked great, and the cardiologist is confident that her heart will remain fine without the oxygen. We've also gotten the go-ahead to only monitor her sat's while sleeping. This means that during her "down" time from her tube feeding, she is completely tube and wire free. For three whole hours a day. It's rather strange. I carried her around the house for the first time today. She's 16 months old. I carried my baby. It's rather surreal.

In other news, Charlotte is attempting to crawl as well. So far, I've seen her take about 3.5 crawls toward an item. That wore her out, though, and she has refused to perform since then. We'll get her going though.

We meet with the San Diego Regional Center and a Special Education Teacher today to map out a therapy plan for the little one. We have a follow up appointment with her primary care doctor on Friday, and hopefully then we can know who we still need to see and who we can say "chao" to without looking back.

Of course, all good news has it's counterpoint and Charlotte's stay was full of that. It appears that her central apnea is pretty significant. To make things difficult, we can't quiet figure out why she has central apnea. She's too "old" for apnea of prematurity to still be a problem, and her MRI revealed that she does not have a malformation of the brain stem, which often causes central apnea. Which leaves CA as a bit of a mystery. Neurology also noted that she has hypotonic CP, although, at this point at least, the diagnosis is more to qualify her for services than it is an actual forecast of her abilities. And finally, her eye doctor told us today that while her eye sight looks great, her field of vision is reduced by about 50%. It's the question I have avoided asking, but there it is. She has about 80 degrees of vision, and beyond that, her peripheral vision is non-existent. But hey! That's 80 degrees she in all sense should not have. We'll take it!

Currently, my two little munchkins are laying on the floor, watching some Go, Diego, Go! It's been amazing to watch them interact like two "normal" siblings. You know, like Caleb shouting, "Momma, she's bothering me!"

Sigh. I love it.

She's Home!

Peter was able to talk the doctor into letting us run more tests on an outpatient basis, and since she didn't have an infection, there was more of a risk of her catching something in the hospital.

The current theory is that Miss Charlotte out grew her diuretic dosage and her lungs got a little wet. It's also possible that she was refluxing and is micro-aspirating again. (darn aspiration never goes away, does it?)

Who knows. Important thing is, she's home!