Hoping his lovely surgeon will discharge him tomorrow. Rich is now travelling for work so getting back to the cheeky redheads is a priority!
Tomorrow morning I will make that familiar trek out to Westmead at the crack of dawn. We will shuffle in to the admissions department where we will line up with the other nervous parents holding pyjama clad children grumpy from the pre-op fast.
I am conflicted in my hatred of Westmead. I feel guilty for despising the very place that keeps my Ted alive. The place filled with amazing, selfless miracle-working nurses and doctors happens to be the place that makes me sick with anxiety. The place I really never want to see again. Every minute I am at that hospital I really want to be anywhere else.
Tomorrow Ted is back there for his tonsillectomy and adenoidectomy. While this sort of surgery is run of the mill it does carry more risk for Ted but all going well we are only looking at a few days in hospital. Irrationally those few days for me will feel like forever.
It’s not just the grubby facilities and the general communist feel you get when “computer says no” and people treat you like an inmate rather than the parent of a sick child… Westmead is the place I watched my baby fight for life, where bad news was delivered time and time again. It is the place where I made friends and then watched as their children lost their fight… For me it is mostly a place of anxiety but deep down I can admit it is also a place of hope.
So in the spirit of Easter hope I will show you a cute picture of my three sleepy bunnies up before the sun yesterday for their egg hunt. A cute photo is essential for ending a whiney post on a positive note is it not?
When you are busy and life is full, the little moments tend to lose themselves in the blur of hours, days and weeks but there are some that stay with you always.
The day of Ted’s Fontan completion is one of those days that I can break up into minutiae. Handing any child over for surgery is daunting but I suppose only a mother in my position can really know the pain we feel when we consent to procedures we know can’t cure our child, we know may kill our child but we have no choice. For the Fontan is but a palliation for kids like Ted. Buying time.
This was that moment for me a year ago today:
And then we had the hours upon hours of waiting. Sitting on the familiar blue chairs outside ICU like we have done too many times before. Fearing the worst while desperately praying, begging for the best. Counting the minutes. Finding anything for a distraction from the dread at the pit of our stomachs.
And then this.
Sadly I know many HLHS mothers who endured days like that but then didn’t have the outstanding outcome we had. They did not have the year of firsts Teddy had. The year of new beginnings. We remember those families every day as well. X
In a year our little Ted has come so far.
While it can be hard not to measure the distance between where his healthy peers are and where he is, it is easy to measure the distance he has come on his own journey instead.
On this day a year ago this was us –
We were preparing to hand our precious blue tinged boy over for the final stage in his three part surgical palliation. There were so many unknowns and the biggest question was whether our brave soldier would survive.
Not only did Teddy survive, but he has thrived. Since his Fontan surgery a year ago he has gained 2 kilos, his blue lips are permanently pink, he turned five AND he started primary school. That special little heart of his can go the distance.
At one point during my pregnancy we were told Ted would have a poor quality of life, he would not be mainstream schooled and later we were also told he would have a long term feeding tube and would communicate not with speech but with Keyword sign.
We showed them.
Turning five is a big deal for kids like Ted. I say this because it struck me in all of our pre birth meetings and in all of the journals I read… that making it to age five without serious stroke, hypoxic brain injury, major cardiac complication as an hlhs kid is a huge marker. We’d been told many times of the odds of certain things happening “by age five” … everything was about five.
So here is a video of Teddy turning five, my non viable fetus:
Ted took his karate party very seriously. Oh and here he is on his first day of school. Mainstream school mind you and rest assured this child never shuts up so keyword sign was not required after he was 19 months old:
Still, we have a long distance to go with this beautiful boy. He has made it to five. He has so much to offer the world. Our hope remains in advancements in medical science. In the mean time we will continue working together to shorten the distance between Ted and his peers. He has such a strong love for life we know he can do it.
Teddy is the nautical explorer of the day.
“Sometimes we are lucky enough to know that our lives have been changed, to discard the old, embrace the new, and run headlong down an immutable course. It happened to me … on that summer’s day, when my eyes were opened to the sea.”— Jacques Yves Cousteau
Rich and I were shocked yesterday when out over a coral reef off the coast of Racha Island, our little Ted took to snorkelling like any other fish takes to the sea. While Tabitha was frightened and fussy Teddy dived straight in and loved every minute.
It was quite choppy, he can’t really swim and we were out far from land but that did not bother Ted. Again his brave little spirit shone through and he had the time of his life, he loves the sea. Really the way Ted applied himself to snorkelling is not dissimilar to the way he is with everything in life. Such a brave little adventurer.
Here are some more photos from our little adventure to Racha Yai.
… The Galvins have arrived.
After a very eye opening journey on Jetstar we finally made it to Phuket.
A peasant in paradise xx
Usually any flight longer than five hours requires us to have him hooked up to an oxygen tank. Now that he has good oxygen saturations (for a Fontan kid) he can fly like everybody else.
I will update from Thailand.