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Post-surgery – Day 5. Milestones in a marathon

On the way home from the hospital, I fell asleep on the subway. Almost missed my stop. I guess adrenaline will only take you far.   Deane is not running on adrenaline. He is, as they say in sports journalism, gutting it out, digging deep and – do I dare say – giving 110%. Today … Continue reading

Thank you is insufficient

My husband and I sat by Deane’s bed yesterday afternoon and read the many, many amazing messages that we have received conveying warm thoughts and prayers for Deane. We can’t begin to express how much this means to us. Knowing that there are so many people, some of whom are friends of friends we have … Continue reading

Post surgery – Day 4. Small steps

It’s not wise to go looking for drama when you’re in the hospital. All too often it will find you and it’s not good. But when there aren’t any big developments, it’s hard to know how things are going. That’s how Deane’s fifth day in the hospital has been. It’s not that nothing happened. Late … Continue reading

Post Surgery – Day 3. Change isn’t always bad

A queasy feeling churned in the pit of my stomach when I realized my child was being moved to the ICU. At 8 a.m. the night nurse told me Deane had had a fever that spiked in the middle of the night. It had been another night of constant de-sats and suctioning. Within an hour, … Continue reading

Post Surgery – Day 2

The hospital at night is not as quiet as you might expect. Unless you’re in a room by yourself because your child is still in constant care with breathing problems. Then it is unsettlingly quiet. Deane is still struggling with secretions blocking his airways. He had a rough night last night and is starting off … Continue reading

Post surgery

So the operation went well yesterday. All the work on Deane’s hip and legs seems to have gone according to plan. The epidural they put in to numb his legs went in smoothly and has remained effective. The schedule was that after a couple of hours in post-op recovery, Deane would be sent up to … Continue reading

Surgery day

Sitting in the family waiting room. Waiting and waiting. My head is swimming slightly with a combination of exhaustion from a 5 a.m. wake up and nervousness of not knowing what it is going on. Our son has been in surgery for four hours. Still two more hours to go. Then comes a long healing … Continue reading

A familiar scene

It finally came. The day I’ve been trying to avoid for months. The appointment with the dietitian. At our last appointment, more than a year ago, I had been told that if Deane didn’t gain close to 10 pounds, it would be time to look at a g tube. I’ve written before about our – … Continue reading