We'd be lying if we said everything is A-ok in the Strong household. It is not. And while we know we are in a very precarious situation with Gwendolyn, we are hopeful. We have a plan. Team Gwendolyn is in full force!
Gwendolyn had another episode last week. She didn't completely stop breathing, but she was on her way. She had been off the bipap for only 15 minutes while I moved her machines into her stroller. Fortunately, her pulse-ox was on and alarmed and I ran upstairs immediately. Her eyes were still open and she was blinking, but she was grey, struggling and her O2 registered at 71 — the lowest we've ever seen her. I ran her downstairs where her bipap was already loaded into her stroller and once on it she, thankfully, was immediately much better. We have known she was not quite herself and have spoken with and seen her doctors multiple times last week. And obviously called them immediately after this episode. This is alarming for many reasons. But mainly because this is now showing that she is becoming weak and in need of more breathing support asap. She has never had an issue with breathing after such a short time. On top of all of this, she has a bladder infection and is cutting her incisors and molars, all of which create a lack of energy. But…she has had those things before…this is different. We have been anticipating this for a long time — machine dependency brings a fear of the day when the machine isn't enough. And we have discussed options and scenarios with her doctors on many occasions. We have reached the limit of her current bipap and so we need to switch machines to meet Gwendolyn's needs. The good news — amazingly good news — is there is now a machine that is very well received by many SMA children – the Trilogy 100. It literally did not exist when Gwendolyn was diagnosed, but now many families begin their journey with this machine as it is much more sophisticated and is meant to be used for the long lengths she now needs breathing support. We are not worried about the machine — we LOVE this new machine because it is giving us options. But we are worried about the transition. We are hopeful that because Gwendolyn isn't in the midst of an illness crisis, the transition will be seamless and no big deal. But, the reality is some children have not successfully transitioned, which leaves us in a place we can't even begin to think about.
We have been very anxious trying to locate a Trilogy, figure out how it will be paid for, and just hoping Gwendolyn could hang in there long enough. We always feel so grateful for the people who help us care for Gwendolyn, but this week they have all gone above and beyond. Her doctors have dropped everything to call or see us. Her night nurses have immediately switched into high gear each night. Her medical equipment company, LifeCare Solutions, literally pulled out all the stops, calling in favors and then driving all over California to get us the machine in record speed — a machine they've never rented before. And the incredible Visiting Nurse and Hospice is once again not only giving us their full support, but making sure we have everything — everything — Gwendolyn needs and fighting for us if they have to. And all of this help means Bill and I can focus on Gwendolyn!
We are on our way up to Lucille Packard Children's Hospital/aka Stanford to meet with our amazing pulmonologist and her team. We may have to be hospitalized so Gwendolyn can be monitored over night. But, then again, knowing our strong little girl, this could be another, “Why are you so worried Mommy and Daddy? This is no big deal!” scenario. We are so, so hopeful and want to believe everything is going to be okay. But the reality that spinal muscular atrophy is stealing our daughter from us is all the more pronounced at times like this and it leaves us fractured and fragile.