Thursday’s surgery went as well as possible and she’s
avoided any infection thus far. Two of
her major surgeries are now complete and God-willing, the next surgery late
this year to close her cleft palate and put tubes in her ears, will be her
last. On Thursday January 30th,
the surgeon cut much of her tongue tissue to release the tongue to lay flat
instead of pointing upwards over her airway.
Additionally, he performed surgery to break her
lower jaw and place four pins in the jaw as well as a large distraction device outside the skin around the face to pull the
pins apart. As the pins are slowly cranked
further apart now each day, the lower mandible is forced to build new bone to
fill in the ever larger gap and eventually provide her with a bigger lower
jaw. As her lower mandible becomes
bigger and comes forward, so too will her now flattened tongue also come
forward and out of the back of her throat.
The steel device encompassing her face certainly looks
prehistoric but we're grateful for this jaw distraction technology
available only in the last decade, as previously a tracheostomy would have been the only option for someone with such an obstructed airway. Here's a good article describing Pierre Robin Sequence and jaw distraction.
Now five days post-op, Evie has a large respirator giving her robotic breaths, and has threads sewn into her tongue as a tool that could be used to pull her tongue forward in case of choking. Numerous times in the last few days, Brad and I have found ourselves panicked as we’ve watched her oxygen saturation and/or heart rate plummet as she’s turned various shades of gray. We've learned that this happens most often because of either fluid build-up in the lungs or thick secretions blocking the respirator, since she is unable to clear drool or even produce tears due to the Vecuronium. Right now she’s on a steady does of a sedatives, paralytics, and morphine, for which they’ll give her methadone when they eventually taper her off of, just as would be done for a baby born to a drug-addicted mom. Once the full jaw distraction (AKA cranking the steel device with allen wrench to bring her chin forward) is complete, then her medical team will evaluate tapering down her drugs and extubating the respirator. This should take place around Sunday, February 9th, and we will finally be able to hold her again!
In spite of our repeated disappointment over the past month, we’re trying to acknowledge the blessings that exist. Not to be underestimated, we count our good fortune to take part in Brad’s company’s outstanding health insurance and therefore are spared from having the additional worry of her increasingly exorbitant medical costs. And of course, it’s never far from my mind how unbelievably lucky we are to have had this baby in a first-world country, where we’re able to save her life; I have cried many times simply thinking about parents worldwide who without this type of intervention, would likely have to watch their child choke and suffocate. We are also very appreciative for the love that we have received from family, friends, neighbors, and acquaintances from all walks of our lives. The meals at the hospitals as well as restaurant gift cards we’ve received, we’re especially grateful for since we’re never at home for mealtime! Of greatest importance though, we feel great gratitude for the prayers that have kept us going. We know that there are many, many people with far worse challenges than this, and it’s humbling therefore to know how many people care about this girl.
Prayers – a few of the things weighing heavy on our minds right now are:
-Genetic Chromosome Testing – Half the time Pierre Robin Sequence presents itself, it’s as part of another, more serious syndrome like Treacher Collins or Stickers Syndrome, which can cause both blindness and deafness. We sent her test off her test two weeks ago and should now hear back any day whether she carries markers for a underlying syndrome.
Now five days post-op, Evie has a large respirator giving her robotic breaths, and has threads sewn into her tongue as a tool that could be used to pull her tongue forward in case of choking. Numerous times in the last few days, Brad and I have found ourselves panicked as we’ve watched her oxygen saturation and/or heart rate plummet as she’s turned various shades of gray. We've learned that this happens most often because of either fluid build-up in the lungs or thick secretions blocking the respirator, since she is unable to clear drool or even produce tears due to the Vecuronium. Right now she’s on a steady does of a sedatives, paralytics, and morphine, for which they’ll give her methadone when they eventually taper her off of, just as would be done for a baby born to a drug-addicted mom. Once the full jaw distraction (AKA cranking the steel device with allen wrench to bring her chin forward) is complete, then her medical team will evaluate tapering down her drugs and extubating the respirator. This should take place around Sunday, February 9th, and we will finally be able to hold her again!
In spite of our repeated disappointment over the past month, we’re trying to acknowledge the blessings that exist. Not to be underestimated, we count our good fortune to take part in Brad’s company’s outstanding health insurance and therefore are spared from having the additional worry of her increasingly exorbitant medical costs. And of course, it’s never far from my mind how unbelievably lucky we are to have had this baby in a first-world country, where we’re able to save her life; I have cried many times simply thinking about parents worldwide who without this type of intervention, would likely have to watch their child choke and suffocate. We are also very appreciative for the love that we have received from family, friends, neighbors, and acquaintances from all walks of our lives. The meals at the hospitals as well as restaurant gift cards we’ve received, we’re especially grateful for since we’re never at home for mealtime! Of greatest importance though, we feel great gratitude for the prayers that have kept us going. We know that there are many, many people with far worse challenges than this, and it’s humbling therefore to know how many people care about this girl.
Prayers – a few of the things weighing heavy on our minds right now are:
-Genetic Chromosome Testing – Half the time Pierre Robin Sequence presents itself, it’s as part of another, more serious syndrome like Treacher Collins or Stickers Syndrome, which can cause both blindness and deafness. We sent her test off her test two weeks ago and should now hear back any day whether she carries markers for a underlying syndrome.
-Blood Levels – Right now, Everly is bordering on anemia and is also vitamin D deficient, which is disadvantageous to her bone healing. I’m now taking aggressive amounts of D3 +
-Extubation - We're cautiously optimistic that once the distraction is done and the respirator is removed, she will be able to breathe normally. As soon as she's extubated though, we'll still have the hurdle of weaning her off all of the drugs and then the huge challenge trying to teach her how to eat again, still with a large cleft palate.
-Sanity – and we
joke not… It’s important that Brad and I remain healthy and mentally sharp, to
ensure we can make the best decisions regarding her care. Brad is carrying an extraordinarily difficult
load as along with this situation, as he is also trying to manage his very demanding
newly-promoted position at work.
Since it's been almost a week since we've seen Everly awake and because she looks pretty darn rough right now, I keep looking at pictures of her in the few days before surgery. Here are a few of my favorites:
"You're going to do whaaat to my pretty little face?"
.JPG)
Her last full day, hopefully, of having to be on her stomach 24/7
.JPG)
The morning of jaw distraction and tongue surgery
.JPG)
Snuggles with mommy hours before surgery
.JPG){kind=link}
No comments:
Post a Comment