Thursday...

Yesterday was full of challenges. She had to go through the insertion of the PICC line in the morning. No matter how good the hospital and the child life team, it still hurts and is foreign. It also maeans many voices, including those of her trusted parents, all telling her that everything is fine. But she is not feeling fine! So the rest of the day she does not trust these oft repeated assurances. By far the hardest part for Cori was her precious dad, whom she calls, "Dada", having to go back to NC. By early evening she knew he really was not coming back, and her room had new nurses promising her that nothing would hurt. We have often remarked that she has the MOST expressive face we have ever seen....and I watched that faces crumble and crash as she told me that she wanted her Dada. Calling him on the phone just produced more sorrowful tears squeezed from her perfect almond eyes and more tremors of her baby doll lips. We were able to complete a Skype call later in the evening. It was her dad she called out to first, despite having to look past her silly smiling sisters. At one point she expanded the screen so that only his face showed. Over and over she ran her little hand, complete with pulse ox monitor, around the edges of the IPad as if she could really touch him. She rested well except for the cycles of beeps and alarms. Morning found her on her tummy in blissful peace. The pain team has removed the I'V pump since she has seldom needed I t. Now the nurse will administer when she asks. She played with the iPad for a long time, took another tummy nap, and is now watching Dora and asking the child life team for puzzles and paints. My dear friend Renae has been with me since yesterday. Cori showed her all the iPad apps she loves and has mastered. She will have to get up and walk a bit this afternoon and have more attention to her stitches and foley catheter. As her mom I am most anxious to get a consult with urology as soon as possible. Please pray we can put these questions about her future surgeries to rest in our worried minds. I have not been able to upload photos from my iPad. I apologize. I will try to figure that out soon.

PICC line

It was not easy on her and that totally breaks our hearts, but it is necessary for pain management and nutrition, since she must go 10 days with absolutely nothing by mouth. Cori also got very upset when her dad left for a shower, so this afternoon when he goes home may really be hard on her. We hate that he has to go, but he is needed at home and at work.

Post op

Our surgeon has met with us. It is very discouraging. She will go through all this and still come home in a diaper and needing her daily enema. No bladder neck at all. Further repair surgery needed that may or may not work. We are very discouraged, saddened, and grieving.

Update

Still progressing. 2 pm. They say an hour or more to go.

Status....12:30 pm.

Surgery called the waiting room to say everything is progressing as planned. Almost four hours so far.

She is in surgery

They took her back around 8. She fell asleep with the mask. They have her scheduled for 600 minutes.

Cori's NG tube

It took over 4 attempts to get Cori's NG tube through her nose and into her stomach. She was, needless to say, very upset. We were upset along with her, but it has now been in for hours and the process is coming along slowly but surely. We have been told they will take her away for surgery well before the 7:30 schedule tomorrow morning. Tonight's task is to get her empty.

Settling in

We were blessed today to get the call during church that we had a room in the Ronald McDonald House!!! Smooth ride up and made great time. Our room is tiny, but we are so glad to be here. Awesome facilities and kitchen, computers, movies, playrooms, playground. Cori is thrilled with her Barbie, angel bear, quilt, and even the little mattress on the floor. She will be admitted tomorrow. It has been neat to meet a family from Macedonia who will be dealing with the same team. Over 80 families are here. They average 25-33% of guests for the colorectal center. Time to turn in. Thank you for your love and prayers.

Title of the surgery

posterior sagittal anorectovaginourethroplasty (PSARVUP).

Eight days until surgery

Wes and I leave with Cori next Sunday. She will be admitted on Monday, May 28th for the NG tube. She will be cleaned out in 4 hour segments. Her surgery is May 29th.....all day. Total reconstruction of the urinary, vaginal, and rectal tracts. We have talked to her about it as much as we are able. She wants to wear big girl panties and go potty like her sisters do. This past Sunday her Sunday School teacher, Mr. Vince, and we would not be surprised to find that he is actually an angel, brought her a cake and had a birthday party for her. She will turn 5 years old 4 days before her surgery. Last week we were on vacation at the beach. She kept saying that she was SO EXCITED! And this year she really took it all in! What a great set of memories!! She glows with life and humor. She is a huge bright star in the galaxy, pounding out light in our lives. Wes will drive us up on Sunday and stay until Wednesday. Then he has to come back and work. Precious families from Biltmore Baptist Church are lining up meals and an irreplaceable friend is planning to drive up for a few days to sit with me. I have the itinerary. I guess that is supposed to be the syllabus, but I feel like I am walking into a final exam that counts for the whole 4 years of college, and the professor never showed up and there was no text book. I still have that nightmare on occasion. It is finals and I never went to class and I never read the materials. But this is so different. This is real life. This is a real person with a future riding on this surgery. And her confidence in all that will happen from May 28th through June 18th and beyond will test me beyond my imagination. And I am flying without a license. No matter the research I have done on the procedure. No one talks about the after care.No one tells you how to explain no fluids for 5 days and no solids for many after that. Where will the tubes come from? How long will they be there? How much help will I get from nurses? Where will I be staying? ( Ronald McDonald House does not let you call until the day before you are to be in the hospital). How do my daughters at home manage? Isn't this too much to put on the shoulders of a 17 year old? Too much for a 15 year old? How abandoned will they feel? What emotional needs will go unfulfilled in minimum of 23 days?

Cori and Mr. Vince.

Cori with her grandmother at her brother's graduation. What a face....what a child...what a challenge.... Thank you for following this rocket ride! I will update as I am able.