I thought I'd share some pictures and videos of Ella's new equipment in the house. It's been quite the lifestyle change for us adding these new treatments to her care and it will still take some time to get used to them (both on a physical and emotional level).
Here is a picture of our living room after her new equipment was delivered when we got home from the hospital on Monday (it doesn't include all of the supplies that we received, which we will continue to receive on a monthly basis).
Below is a picture and video of Ella using her nebulizer. She will most likely only use this when she is sick. It helps to break up secretions in her lungs, making it easier for her to cough them out. When she is sick, she will use this up to four times daily.
Here is a video of Ella using her "Vest" (a.k.a. "Shake"). I don't think I need to include much more explanation other than it helps to break up lung secretions. This is by far Ella's favorite treatment :) She does between 10 and 20 minutes for each treatment (in 5 minute sessions). When she is healthy, she will do this treatment twice every day. When she's sick, she'll do it four times a day. And yes, she "sings" pretty much every time :)
Below is a video of Ella using her Cough Assist machine with her suction machine. The Cough Assist machine blows air into her lungs, and then rapidly sucks it back out, simulating a cough (since she is too weak to effectively cough on her own). This treatment always follows a Vest treatment. The video shows one "cycle" of five breaths, followed by suction. Each treatment includes five cycles of at least five breaths. When healthy, the five cycles will be done twice a day, and when she's sick, four times a day.
The following picture is of Ella's NG-tube pump (nasogastric tube). Even though she is feeling much better, she still isn't eating. We're not entirely sure why she doesn't eat much (she didn't before she was sick, either). She is capable of eating, she just chooses not to. So whether it's due to weakness or something else, we don't know. But she needs nutrition. So she does an hour-long feed four times daily of Pediasure formula (sometimes we'll get a few bites of regular food in between tube feeds). Once Ella is completely recovered from the RSV and pneumonia (and her lungs can handle surgery), she will have a g-tube placed (in her abdomen). This will be a much more convenient way to do her feeds (and without having a tube sticking out of her nose!).
Next is Ella's pulse-ox machine. This one is quite simple. The probe is taped around one of her big toes while she sleeps and measures her beats per minute (BPM) as well as her oxygen saturation levels. An alarm sounds if her levels are out of the normal range for someone with SMA. So far, Ella's levels have been where they need to be.
Finally we have Ella's Trilogy, or Bi-PAP machine. This machine helps to make sure that Ella's lungs are filling to capacity while she sleeps. It also gives her weak muscles a break at night so she can get a better sleep and have more energy while awake. It doesn't actually breathe for her, it just assists her lungs. She uses this every night and at nap time, whether she is healthy or sick. She will always use it from this point on. It looks a little scary, but now that she's used to it, it's quite soothing for her and she falls asleep very easily with it on.
So as you can see, our little Squishy is quite the trooper. In a matter of 12 hours, she went from having absolutely NO medical intervention to having SEVEN machines that she will use on a daily basis for the rest of her life. We are so incredibly proud of our brave little girl :)
