A gentle heads-up: the text and photos in this post may not be appropriate for the squeamish...
Dr. Taylor came by our room this morning after the bandages were off to turn Leah's distractor for the first time, and to teach us how to do it. He explained that the device, which is like a wrench, will attach to the end of the distractor like a sleeve. The distractor and the wrench are hexagon shaped on the inside, so they have to be fitted together. Once they are fitted together, we turn one full turn in the direction in which the arrow printed on the wrench is pointing. This is obviously very important, since if we turn the other direction, we will reverse any progress, and this entire surgery will have to be repeated. Not a good scenario...
Each time we turn the wrench, it will expand the distractor by .5mm. Since we will turn it twice per day, we are expanding the space in her skull by 1mm per day, and since we are looking for a total expansion of about 20-30 mm, this will be in place for about 20-30 days. At that time, we will come back to Philadelphia to have the external part of the distractor removed, while the internal part will remain in place until Leah's second surgery, which will probably happen sometime in January.
All of the doctors who have seen her incision say it looks great, and that she is doing better than expected. She continues to drink bottles well, and has wet diapers, so we know her usual systems are working. The nurses took out her arterial line this morning as well, which she did not love. It bled pretty substantially, but they managed to clean her up a bit and give her some more morphine, so she is now sleeping comfortably.
Some incision and distractor photos are below:
Julie & David - thoughts and prayers are with you. Wish I could reach out and give you both a big hug! With all she's been through, she is still so beautiful. Hope things continue to progress and you can come home soon. Take care.
ReplyDeleteDear Julie and Dave - we had no idea what Leah and you have been/are going through until a couple of days ago, and since then I haven't been able to stop thinking of you all. I can't even begin to imagine how hard this must be for everybody involved, but I wish you courage and optimism. I admire little Leah for her stamina and bravery - she is truly amazing! Our thoughts are with you and Emma and John, who must be very worried about their little sister. I am so glad the surgery went so well, and that Leah is now on the road to recovery.
ReplyDeleteLots of love,
Ursula, Peter, Sophia and Johanna.
Amazing, as always. You guys never cease to amaze me by your faith, patience, fortitude and love. Leah is following in suit. How hard for all of you but how wonderful that she/you are one step further in the process. All things considered, she looks wonderful to me!! prayers and love, Denise
ReplyDeleteThank God for skilled doctors and nurses! She looks really good, and it's great that she's nursing and ... uh ... that her digestive system is working. Are you two getting some rest? Please take care of yourselves. We are praying for all of you.
ReplyDeleteShe is as beautiful as ever. Thanks so much for sharing this with us. Her Hamilton friends are all pulling for her. Take care!
ReplyDeleteWow! Looks like all is going well and that the two of you are hanging in there with each new piece to this journey. Thinking of you all and sending you all the good Karma I can muster! Peace.
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