I’m back in Boston again this week to be with Lydia while she gets a little mini break from the ventilator and surgeries. Or at least that is what I had planned on. After being extubated for over a week now they decided to take her back to the OR again today to clean out and close the wound from where her spit fistula was. They had put a silicon sheath around her upper pouch to make it easier to access but this wasn’t allowing her to heal. It was a quick procedure but unfortunately she wasn’t able to be extubated afterwards and spending the night again on the vent. Hopefully tomorrow she can be off and ready for another day of holding and snuggling. The plan is to give her a couple weeks to allow this to heal and then bring her back to the OR when dr. Foker is in town to put the esophagus back on traction and start over again. Lydia has unfotunately earned the title “most difficult patient.”
Her other set back for the week is a femur fracture that the nurse noticed on Saturday when doing her diaper changes. Due to her being on IV nutrition and lying around for so long, she has developed osteopenia and very fragile bones. She has her right leg splinted and doesn’t seem to be in too much pain. It is a little swollen and bruised but doesn’t seem to bother her too much. We’re not sure how it happened and were surprised by the news. Bedrest is rough on all of the body.
Her last bit of excitement for the week is the addition of her new accessory – her butterfly helmet to help round out her flattened little head. She doesn’t seem to mind her new fashion piece even if it weighs her down a bit. With the helmet I think she’s a full 11 pounds, without still a little under.
On the news front back home, Wyatt is now sitting up and has 4 little teeth he likes to proudly show off. He’s also taken to solids and sure likes his sweet potatoes. Ava remains our happy giggly girl and rolls all over the living room floor. She hasn’t quite taken to eating as much as her brother but enjoys drinking from a cup and is getting a little better at this new skill. Gone are the days of two babies staying put under the play mat. I’m going to have to soon quicken my reflexes to keep up with them.
- Posted in: Uncategorized