Three Little Birds

Story of 3 little birds and one who soared above us all.

Lydia’s Boston Adventure Day #365

It’s the most dubious of anniversaries as Lydia marks her one year stay at Children’s Hospital Boston. Dr. Jennings originally thought a 2-3 month stay, Dr. Foker had said it could be 3-4 months, I pessimistically figured it would be a good 4-5 months and now one year later I think we are still looking at least another 4-5 month stay. I think Lydia wants to make sure she has established Massachusetts residency so she won’t have to pay out of state tuition when she goes to Harvard or MIT.

On a more positive note, Lydia has had a pretty decent week. For one week in quite some time everything has been positive and moving in the right direction. She has gone for longer and longer periods on just a pressure support setting on the vent, meaning she’s doing all the work and has been sitting up in her new chair, playful, no fevers, peeing and actually has a somewhat decent looking chest xray – pretty much all the goals we’ve set for her. They’re hoping to be able to extubate her on Tuesday so maybe, just maybe she’ll do well and we won’t need to discuss that pesky tracheotomy business anymore. I had already accepted it would likely be her new fashion accessory but definitely won’t mind doing without it.

The interesting discussion of this week happened to involve around Lydia’s spleen. Her nurse told me on Wed that they had started amoxicillin for her asplenia. When I was all, “What? She doesn’t have a spleen?” The nurse was pretty sure she’d read somewhere in her chart that she didn’t have a spleen and asked a resident who agreed she didn’t have a spleen and would probably just be on amoxicillin forever. I was trying not to to flip out at the poor nurse but was a bit flustered that it would take 17 months to find out she was missing an organ, one I would prefer her to have. I even was flustered at Clay that maybe someone had told him and he failed to mention it to me. Finally the next day the same nurse apologized for the confusion, they looked into it – she does have a spleen, it was seen on a previous ultrasound and it was working. She does remain on a small does of amoxicillin for low levels of her immunoglobulin but we’re not sure how long she’ll be on it. I certainly don’t take any of Lydia’s functioning body parts and organs for granted and don’t like surprises that she’s missing something else.

Clay will be heading out to Boston this week and will be spending Easter with Lydia. I’m trusting Clay to make sure she is in her Easter best. Hopefully we will will find out more this week to how long we will need to wait before the next surgery for her esophagus or if she should come back to Missouri for the summer. My hopes are we can actually get the esophagus together relatively soon and be back in MO at the end of summer. I’m really hoping for a good birthday gift come Labor Day. I only want one little thing….


1 Comment

  1. Aunt Brenda

    We do pray that she will be home soon BUT not too soon that she would not be well enough and might have to make another trip back to Boston. We want her to be nice and healthy and as strong as possible. She is a real fighter and deserves the best care possible until she can be out of the danger zone and you can relax knowing that. She is always in my daily prayers. Love and kisses to the J Pack. Auntie B

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