Since last post there has been a lot going on, good and bad, and I have been very very busy and most of all tired. Amanda’s nanny had knee surgery and will take a month and a half off; it’s only been 2 weeks and I am already missing her and her help so much! The nurses we’ve had since Amanda was 5-6 months are helping us a lot during the day, and this helps a lot, but Amanda wakes up almost every night needing repositioning or just cuddles and the sleepless nights keep adding up.
Last week while one of Amanda’s newest nurses was here we went to our building park (I almost stayed to rest but since it was a new nurse I decided to go) and while Amanda was on Bipap I started to notice that she was crying, then I looked at her pulse oximeter and her O2 was at 91-92; my first thought was that it was giving an incorrect reading–Amanda never desaturates on Bipap, but, her numbers kept dropping. The nurse suctioned and asked me for the ambu bag…these nurses are well-trained and know what to do FAST, I wasn’t sure about removing the Bipap but she told me to do so and turn on the O2. At this point Amanda was pale and her saturation was in the 70s. She gave Amanda a few breaths with the ambu until her numbers came back up. We put Bipap back on and she suctioned again and lots of secretions came out. These kinds of things hit hard; while everything was happening I kept thinking, is this it? Is this her last breath? It is always shocking and nerve-wracking to see Amanda stop breathing and turn pale/blue. When she recovered my mind was going crazy looking for answers to why this happened. Maybe her head wasn’t where it was supposed to be, maybe having her play in a certain position caused secretions to build up, maybe her Bipap settings need to be checked, maybe she is weaker, maybe, maybe, maybe. The truth is, it is a combination of everything and most likely Amanda getting weaker every day. In general, Amanda is not tolerating much time off her Bipap. She doesn’t like to play without her Bipap on, and sometimes when she is off Bipap she doesn’t look happy. Bathing her has become more difficult as she keeps choking and needing suction and Bipap. SMA is progressing fast and I hate watching it taking over my baby without nothing to stop it. We knew this would happen, but it is never easy. After a few days of fighting tears there is nothing else to do but to carry on…
That was the bad, so, the good: remember how Amanda didn’t like to paint? Well, maybe it was because I couldn’t find a way to make her do it independently. With some tips from other SMA families I was able to get her to paint and she loves it! Here’s a video (she’s better than what the video shows but since I was also holding the camera I didn’t position the paper the right way). I got her new markers that make it even easier for her to paint and she is loving it!
We also watched Tinkerbell together (daddy didn’t really watch he fell asleep) in the living room and this week with Teacher Maecy Amanda had lots of fun!