Back in Bean Town
I’m back in Boston for the weekend while Clay rocks out in Nebraska and the 2/3rds are being entertained by Grandma Pam in Trenton. We haven’t made a lot of progress the past couple of weeks in terms of esophagus growing, but Lydia has remained stable which some days is the best we can hope for. She had surgery #11 on June 24th in which they sewed the lower esophagus to her chest wall and reattached the upper pouch to traction. They are currently giving her esophagus a break from the traction and just letting it rest. She had been dopamine earlier in the week due to low blood pressure from all the diuretics she gets to keep her fluid off but her blood pressures have been stable the past few days without it. They’ve also turned off her paralytics and she is beginning to open her eyes and wake up a bit. So far she’s been really calm when awake and not fighting the vent and appears to be very comfortable.
On a plus side, she is (hopefully soon) going to be able to start Omegaven – the non FDA approved expensive fish oil that goes into her veins. We had tried really hard to get her on this at Mercy back when her liver enzymes were way up and her orange color lovingly earned her the nickname Snooki. Boston is the leading center in the country for using Omegaven and now that her enzymes are creeping up again, we should be able to get the FDA approval to get her on it. Another plus to using the fish oil besides helping her liver recover is that is has been shown to decrease cellular inflammation all over. This may be another reason growth of her esophagus has slowed down and hopefully after a 2 week break from the tension sutures and getting started on the Omegaven lipids, she will be ready to go back on traction. Right now it looks like we are still a good 4-6 weeks away from getting her esophagus connected as they want the ends to overlap and there is still a 3cm gap between the ends. So we will try to patiently wait as Lydia continues her summer in New England adventure. While I hear the falls are beautiful around here, I am still optimistic we can get her home by the end of summer.
I want to give a big thanks to Tim and Pat Whitaker for donating frequent flyer miles to help with my trip out here this weekend. This was my first flight out here with no airline delays! Only a little cancellation of last night’s really late flight due to Obama being at the airport, but I’d rather fly during the day anyway so thanks Obama!
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