A month ago Gesina was admitted to the hospital for shallow, rapid breathing. After all the breathing treatments, she just "got better" overnight. On Saturday, she started the shallow breathing again. Because she wasn't magically getting better and in fact, seemed to be getting worse, I had to bring her in. I haven't seen the ER act so quickly at my small time hospital! Of course, we got transferred to Children's of Wisconsin (CW) via ambulance but Gesina was in good spirits. Here she is with, as Joe Mazzola said, the cutest ventilator ever!
She is getting enough oxygen now, her heartbeat has gone back down to near normal, but her breathing is still a bit rapid for her. She is going home today (Tuesday) but we get to bring home a baby inhaler. She is now considered at risk for asthma because of her strong reactions to respiratory viruses. I'm hoping she can dodge another diagnosis but as a child with quad CP, I don't THINK I'll need to worry about her overexerting herself physically... but I could be wrong. That is a question for her Physiatrist.
We've also been trying out a wheelchair/stroller combo. It's got bells and whistles but needs to be to support her head and trunk. Here she is demonstrating how no one controls babies head, not even the "best" wheelchairs!
Of course, this exact wheelchair costs $9,000... yeah, as much as a decent used car :-( We are not at all confident that her private and/or Medicaid insurance will cover it. We are going to work the argument that this particular chair will last her up to 7 years (!!!) which is much better than the expected 2-3 years other wheelchairs last but I'm not confident. If only she could gain head and neck control she wouldn't need such an involved design. Insurance companies tend to argue that at her age, why can't she just use a regular stroller? Uh... because her little body literally collapses. Her trunk forms a 'C' and her head rests on her chest. This happens in her new car seat as well so I'm trying to get her a special needs one of those too. Sadly, this is just the beginning of my long future of fighting with insurance companies to get my baby the tools and products she needs to live a life that approaches "normal". Blah.
Other than these challenges, Gesina has been doing so well! Seizure free for 3 months!!! She sees the neurologist at the end of the month and if she makes it seizure free by then, we will discuss slowly weaning her off of the Phenobarbital (one of her 3 seizure meds). The Pheno makes her sleepy and having her more alert during the day would hopefully be a benefit for her development. She has also been using her hands more. Her upper body, compared to her legs, was more effected by her brain injury. So it's a huge deal that she has "found" her hands in the sense that she now can more accurately get them into her mouth. I'm optimistic that this means she may be able to walk if her legs aren't as affected. We'll see and in the meantime, here's hoping! Here's the most recent pic of her before the hospital trip. She awesome, inside and out!
