When we actually managed to meet together for family devotions this summer, Psalm 103 was the psalm we reviewed together, having memorized it for the first time many moons ago:
"Bless the Lord,
O my soul,
and all that is within me,
bless his holy name!
Bless the Lord, O my soul,
and forget not all his
who forgives all your
who heals all your diseases,
who redeems your life
from the pit,
who crowns you with
steadfast love and
who satisfies you with good
so that your youth is
renewed like the
I do not want to forget any of the benefits that the Lord made very real to our family this summer. First, I would like to remember all the Lord's goodness to us in regards to Tayta and her facial surgery. God has been so good to us!
I wrote here about Tayta's rare tissue disease and the plans for surgery, and if you've read along you've already read some of the ways God has provided for Tayta and our family. The later, August 15th surgery date turned out for the best in so many ways. For one, Tayta was able to enjoy, and participate in to the fullest, all the family trips and summer outings, including our church's annual family camp (that's biannual to us, of course).
As Tayta professed Jesus Christ as her Savior some years ago, we had talked with her about baptism, leaving the decision to her. On the last day of family camp, Tayta told Dear Husband that she would like to take the step of baptism, publicly declaring her faith and trust in Jesus. It was an occasion for much rejoicing. My parents were thrilled to be present for her baptism, a first for them as our other children were baptized in Jordan. Had Tayta's surgery happened on the earlier, "preferred" date, she would have missed family camp altogether.
On August 14, Tayta and I flew into Madison, Wisconsin, in preparation for her August 15th surgery. We were transported to what would become our perfect home-away-from-home in Madison, the Ronald McDonald House, by a RMH volunteer.
The Ronald McDonald House, which provides housing and services for out-of-town families with children in the hospital, is a wonderful community charity. In part supported by McDonald's, it is also funded by many local businesses and run by volunteers as well as paid staff. The RMH provided us with very comfortable accommodations just a couple of blocks from the hospital, and volunteers from the community brought in a home-cooked dinner each evening. We were thankful that they had room for us the three times we needed a place to stay: the night before surgery, the five days after surgery and release from the hospital, and a final night before Tayta's second post-op check-up. The house had full occupancy each night we were there.
Tayta and I decided that it was better that we had to travel away from home for her surgery as her recovery time at the RMH passed peacefully and comfortably, and there were no distractions for me. I was able to give my full attention to Tayta and her recovery needs. I'm not sure I can say enough good things about the Ronald McDonald House and its staff and volunteers!
Nor can I say enough good things about all the kind and competent health care workers who cared for Tayta during her surgery and hospital stay. We were very impressed with all the staff at The American Family Children's Hospital, where Tayta had her surgery...
...though I have to admit, Tayta and I were very thankful to be released as soon as possible. Once the tubes and monitors are no longer necessary, hospitals, no matter how nice, are just not the most relaxing and comfortable places to recover. Not to mention the poor food choices for someone who must sip through a straw.
And now for the post-op/recovery pictures: below is Tatya in PediatricICU soon after her surgery. They provided a couch/bed for me so that I could stay with her at night. I thought the room pretty cheery for ICU.
The nursing staff was great and tried to let Tayta rest as peacefully as possible, despite needing to regulalry check her vitals and test the live tissue connection with a Dopler instrument.
Tayta was glad to move to a gliding rocker the next day and,below, is how she looked for two days following her surgery: sad and pitiful. Her pain was minimal (the nerves in her face were severed during the surgery but will slowly regenerate) but she experienced discomfort from the swelling, which peaked a few days post-surgery, and from the tissue donor site under her left arm. She's sipping a chocolate milkshake. The first one was good, the fourth and fifth, not so much.
Two days post-surgery and still no smiles from Tayta. She is still looking pretty sad and pitiful but says she is fine. I made this picture smaller for any squeamish readers. Tayta wanted me to include it, but then she likes dissections and is thinking of pursuing nursing studies. For my readers with medical interest, or just curiosity, since many have asked, the head drain is for the one incision the surgeon made on Tayta's head, just in front of her left ear.(She had a 6 inch incision under her arm/back as it was the donor site for the tissue transplant). The yellow "popcorn" sutures held the transplanted tissue in place. Medical wonders, for sure!
Life suddenly improved when Tayta could leave the hospital, wear her glasses, and manage at least a half smile.
Five days post-op
At one week, Tayta's surgeon removed the sutures and gauze from her face, along with her head drain. Her smile is growing.
Dr. John Siebert, Tayta, and Dr. Seibert's PA
Two days ago, back in Jordan, I took these pictures of Tayta, now four weeks post-op. The swelling continues to slowly subside, her skin tone is returning to normal...
...and best of all, her smile is back in full force. It will be weeks, even months, until the swelling subsides completely. Tayta will need a second, minor revision surgery anytime after six months from her first surgery. In this outpatient surgery the surgeon will correct the atrophy in her left lower lip, sculpt any residual tissue bulkiness from her left cheek/chin, and tuck the scar just inside her ear. Officially, there is no cure for PRS, however Dr. Seibert's patients have not experienced further tissue loss after undergoing this free-flap tissue transplant surgery. This is our hope and prayer for Tayta. Again, I say, medical wonders! And again, I give thanks to God for all the goodness with which he has blessed Tayta and our family as we've dealt with this disease and surgery.
We are so very grateful for all the people who have prayed for and offered words of encouragement to Tayta as she underwent surgery, and now as she recovers. Thank you!