home is where the heart is: a hospital journey.
We are all ready to go home but we’re not. Discharge is set for June 5th but it would be a miracle if we actually left the hospital that day.
The beauty of the Canadian healthcare system is that we don’t have to pay for our stay in hospital or any of the equipment we need. Our Bipap machine alone is $15,000. The downside of the system is that we often have to wait: for equipment, specialists appointments, non life threatening surgeries.
So, we wait. Probably another week or so.
Over 5 weeks ago we were admitted to the hospital. It feels like ages ago. I had NO idea that our trip to the ER would result in intubation, extubation, Bipap and a J tube insertion. This place has become our home. It’s weird and comforting at the same time.
Looking back I can scarcely understand how we made it through. Yes there were tears and I was throwing up and having trouble eating and functioning, but we made it. God is so good and kind to us. He has never left our side.
Florence will be going home with a Bipap machine for use at naps and during the night. She will have a GJ tube button or MIC KEY inserted at the end of June. She will be fed through her J tube (directly into her small intestine) for awhile. We were hoping for G tube feeds (directly into her stomach) sooner but it’s a process and they want to make sure she doesn’t aspirate (i.e. have acid reflux or vomiting). She’s amazing and doesn’t display any signs of this, but as with all SMA babies they take things slowly and expect the worse. As one doctor said “We trust the nature of this condition and what we have seen it do, because that’s all we know.” I smiled and nodded and felt my heart say: well, I don’t trust it, so say what you like, I will never accept it as a part of us. And somehow his words made me feel at ease.
We also have coverage for all of the supplies we need on a monthly basis, from white vinegar for sanitizing equipment to syringes to formula to medical tape.
We are blessed to have 56 hours of in home nursing care a week. It may take some adjusting to have someone in our small home with the creaky floors and tiny bathroom all the time, but it will be SO helpful.
As our time here draws to an end, I want to tell the medical world: This is not who she is! This is an SMA free zone! We don’t live under those restrictions. We don’t expect the worse. She is doing so well and already beating the odds. As a baby, Flo could hold her head up and sit if we held her. She could breastfeed and eat orally. She only recently started losing the ability to hold her head up I was told I couldn’t breastfeed or feed her solids (although there is hope for her as she gets older). She would happily eat some puréed bananas and have her mamas milk.
She can move her hands and part of her arms, she’s bubbly and chatty and loves to sing. She can swallow her secretions and suck and chew on things. She can move her feet and ankles and cry loud enough to let you know she’s pissed! She doesn’t require Bipap at night to keep her alive, she just needs it to help her lungs expand, to build up a reserve.
She is not your typical SMA type 1 and this is no small miracle.
We celebrate her accomplishments every moment of every day! And I appreciate those nurses and doctors that do, in fact I love them! They see her and are amazed. They are proud of her and slightly stunned.
We are moving forward, not backwards. We are living in grace and letting go of fear.
Life is so short and we now understand that it’s also fragile. Things change in a moment, but God doesn’t. We get tired and feel like we can’t cope.
God does not. This is why He is the strength of my heart. My mother heart started to weaken the moment we got the diagnosis. It is only because of God’s great love that we can continue and do all things through Him.