The Trip to Cincinnati

What a busy week it has been. Last Tuesday, Becky called me at work to let me know that our nurse would not be able to go to Cincinnati Childrens with her due to the sudden death of her father-in-law. Our heart broke for her since we know how much she loved and respected her father-in-law - please continue to lift up Lisa and her husband Boz during this time.

On Wednesday, Becky spent a majority of the day on the phone with Medicaid and at 4:45pm was finally approved for all our travel.

Thursday was a fun day spent with family for Thanksgiving. And as soon as they left, the boys started hauling all of Christmas out of the attic and closet. We got 3 trees up - but not decorated - so there's still a lot of Christmas to put up when we get back. But Tucker and Cade were so surprised to get up on Friday morning and see the big 12 ft tree in the foyer.

On Friday morning, Becky and Aidan got up and went shopping at 5am - in all of years of marriage, she has NEVER done Black Friday shopping and I had no idea what possessed her to get up and tackle it, but she did. Friday evening, we began packing the van and early Saturday morning, we took off for Cincinnati. Aidan and Noah are with Becky, Titus and me, while Tucker and Cade stayed in Dallas with family and friends (who are spoiling them rotten).

We drove to Nashville on Saturday, and then on to Cincinnati on Sunday. We met our dear friends at the Creation Museum (which is totally awesome - and empty on Sunday afternoon). After touring the musueum and dinner, our friends took Aidan and Noah to their house in Wooster, OH and we drove to another friends house here in Cincinnati where we are staying this week.

This morning, we drove to Cincinnati Children's and had our first appointment with the geneticist. We thoroughly enjoyed meeting her and she was delightful with Titus. Our next appointment was an hour later with the anesthesiologist for our consult for the rest of the week. He spent 90 minutes with us taking all of Titus history and thoroughly documenting everything. We feel very comfortable that they will take care special care of Titus tomorrow.

So, that's all the detail - but here's the rest of our week. We have to be at the hospital at 7am in the morning for Titus CT Scan. Since the CT scan is of his lungs, and his lungs need to be fully inflated, they will more than likely intubate him - which is one of the issues that Titus has with his lungs - he doesn't like to be intubated and when they extubate him he does a bronchial spasm and it can take awhile to bring him back out. Please pray that he will come out of anesthesia easily - since this seems to always be very difficult for him to recover from. That afternoon, we have another consult with the three specialist who will be scoping him on Wednesday.

On Wednesday, Titus will go back to the OR and be put under for the next phase. Three different specialists (ENT, Pulmonlogists, and GI) will perform various scopes on his lungs, GI tract, etc. At the end of all of that, they will run a probe down his nose which will have to be there for 24 hours. He will spend the night in the hospital on that night. On Thursday, once everything is checked out, he will be released, and we can prepare for our trip home. We plan on driving home on Friday and Saturday. If Titus is doing good, will make the trip one day, but we do have hotel reservations in case we need to stop and give him a break.

Next week on Wednesday, the entire team of doctors will meet to review their findings and determine if Titus is a candidate for airway reconstruction. They will call us afterwards to let us know.

Most people have asked "why Cincinnati Children's?" But the answer is quite easy. The team of specialists are THE experts in aerodigestive issues and airway reconstruction. The ENT created the surgery and people come from all over the world to be seen by this team of doctors. When they reviewed Titus medical records, they approved Titus as a candidate - and so we are here.

We appreciate all the prayers and notes of encouragement that we have been receiving. It brings us great peace to know that Titus (and our entire family) is being prayed over during this time (especially since we are all spread out in Dallas and Ohio). We let each doctor know that they are being prayed for as they work on our precious child. I would also appreciate your prayers for my job this week as it's difficult for me to not be checking email every 5 minutes, and there are some major reports they are produced this week that I generally do and have had to relinquish to others to back me up this week. I know they can get it done, but others are not so sure (and not to understanding why I can't be on all the conference calls this week).

Titus is doing great. He's been laying here next to me laughing and babbling. He's even been off of oxygen for the last hour and kept his SATs up in the high 90's the entire time. He has been great with all the doctors - happy and alert and showing his personality. And, he's been very content considering all the different hands that have been on him today.

I'll post more tomorrow.