Friday, September 14, 2012

Forget not all his benefits

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

The pictures below were taken three weeks post-op, just before flying back to Jordan. As you can see, Tayta's kept her sense of humor through all this, an important quality for coping with looking "ridiculous" for some weeks. I like her spunk.

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!


Jodi said...

God bless her, is is beautiful. I'll keep praying.

Heather said...

Thank you for updating, I was thinking and praying for her. She is truly a beautiful girl and I continue to pray for her full recovery and healing.

Church Docs said...

She is an amazing young woman from a special family, indeed. I will never forget the joy I felt as I heard your kids sing and play for us in the Fireside Room and again in the auditorium The Lord's Prayer. I think the Lord was smiling on them all that day - He has made beautiful people in all of you!
Laura Botimer

jlt said...

What a wonderful attitude Tayta has! I love her smile. It is infectious. :) I am glad to see the wonderful progress and am praying for it to continue. What a wonderful blessing it must be to see your daughter baptized and with your family there as well. I rejoice with you.

Love, Joy

Terri said...

So glad things have worked out well! Dr. Siebert is amazing! Praying for more healing! We are heading to Madison tomorrow morning for Hank's revision! I feel like I've already been there after reading your blog. Thank you for such a great description! xoxo

Brittany Belling said...

We also visit the AFCH quite often with my daughter (at least monthly) and we stayed at the RMH for two weeks when she was in the NICU.

I'll make sure to keep your family in my thoughts and prayers, and I'm a new follower of this blog!

Quotidian Life said...

Nice to meet you, Brittany. Thanks for stopping by and thank you for your prayers. I hope your daughter is being helped by the wonderful people at AFCH. How is she doing?

Saleh Alkhulaqi said...

Is her face will still like this or will be better more than like this I hope to be better