Wednesday, October 21, 2015

Appointments overview {rather long!}

Our pediatrician recommended, right away, a neurosurgeon in Fort Worth.  The doctor used to be here {in OKC}, but moved to Texas about ten years ago.  Since our doctor had not seen a case of craniosynostosis in roughly seven years, that was simply who he knew to refer to. After making the appointment and some strong encouragement from friends, we found some connections and reached out to a neurosurgeon here, too.

Both doctors were way backed up and originally gave us appointments in late October.  This seemed so far away to us and we asked to be put on waiting lists.  I suppose the ladies I talked with could hear the urgency I was feeling and were so kind and very helpful.  And by the grace of God, both of the ladies I talked with about making appointments called back the same day and got us appointments within ten {10!} days.  Humbled again by God's kindness and faithfulness in all of this.

Our first appointment was with the doctor here at OU Children's, Dr. Yaun.  It was, I suppose, really our "second opinion".  Patrick was able to meet me there and she was so kind and so thoughtful.  She had Caleb lay down and looked him over.  She checked his eyes and obviously looked at his head.  She told us that based on his head shape that he had a saggital suture fused and that the radiology report just couldn't be accurate. {whew.}  She said he looked so good otherwise. {whew. again.}

She had us sit down and drew a picture of what was going on with his skull and then showed us how the surgery would go -- where the cuts would be and such.  We knew there were a few options and the one she did was more invasive, would most likely require a blood transfusion and a longer hospital stay.  However, Caleb wouldn't need a helmet because the surgery would be immediately effective.

At one point, she looked over at me and said, "I know this is scary.  Anytime a baby needs surgery, it's scary.  Especially when it's on the head. But of all of the things he could have, this is the best one.  It's treatable."  I so appreciated her thoughtfulness of me -- his momma -- in the midst of all the chaos and questions and words.  She spoke to my hurting heart and reassured me that it was going to be okay.

Two days later, we drove down to Fort Worth to meet with the other doctor.  It's a 3 1/2 hour drive, so we needed an early start to get through traffic and construction plus a nursing baby.  We got to FW a little early, but just went to Cook Children's hospital and hoped to get in a little before our appointment time. The facility is incredible! Andrew and Elise LOVED playing in the waiting room and I was able to nurse Caleb while we waited.  It didn't take them long at all to call us back and the room had a TV with Disney on -- Andrew was delighted.  In fact, I'm not sure he made eye contact with the doctor or even knew he was in the room. Ha!

Dr. Honeycutt came into the room after looking over the x-ray and CT scan discs. He did not show us any of the scan results, but he confirmed what we knew and showed us this little mold of an infant head that allowed us to see what Caleb's skull looked like.  He went over the surgery he would recommend, an endoscopic surgery with two small incision lines and a helmet for recovery. He then told us he would do that surgery in about two weeks! {Say what?}

We asked some of the same questions to gauge his perspective of Caleb's situtation and his answers were very similar to Dr. Yaun.  He was friendly and kind, but was quick to the chase and didn't have the same warmth and bedside manner at Dr. Yaun.  He didn't even examine Caleb. So there's that.

We found out that with the endoscopic surgery, it's a 50/50 deal.  Half surgery, half a good helmet.  This means he only uses a helmet company in Fort Worth and we would need to drive down once a week after surgery for fittings -- for 6-8 weeks.  Then twice a month, once a month until Caleb didn't need a helmet any more.  He also said, basically, that if we didn't mind the more invasive surgery it could easily be done here or there.

We prayer fervently before these appointments for wisdom and unity between Patrick and myself.  And after leaving Dr. Honeycutt's office -- I feel like those prayers just blanketed us and we knew.  There was no question that we wouldn't stay in OKC.  There were pros and cons to each procedure and it was overwhelming enough to consider what we would choose for Caleb, but thinking about leaving Benjamin, Andrew and Elise and not being close to home felt even more heavy.

To make the decision even easier, Dr. Yaun called us as we were driving home from Fort Worth.  She "just wanted to share the CT scan results" with us.  It was so nice to know that she took him out of her day to call us and explain what she saw! And as a bonus: the scan confirmed that there was only ONE suture closed, not two and a half!!! {whether it was a bad x-ray or a Healing touch from the Lord, we will never know...}

As I was talking with her, I shared that we wanted her to do the surgery.  She was kind and said she was happy to help us and walk with us.  I asked for a tentative schedule and she said, "Well, he will be three months on November 13th.  So we could do November 19th or December 3rd.  Whichever works best for you all." Oh wow, okay.  Nothing like having a date set! She told me that she would be on vacation, but that she would leave a note for her nurse to make sure there was room on whichever date we chose.  And before we got off the phone she made sure to tell me that it was a pleasure meeting us and she looked forward to helping Caleb. {bless it.}

After discussion and talking with some family about coming down, we decided on November 19th.  A day we will never forget, for sure! The day after my birthday and the day before our anniversary.  This week will be a week to celebrate in years to come for so many reasons! :)

We covet your prayers and trust that God is already moving and using this for His glory!

Here's how you can pray:
*For no long term developmental delays.
*For a easy and successful surgery.
*For an easy blood transfusion, or even no need for one!
*For a quick and smooth recovery -- and for a shorter hospital stay {opposed to being there more than four days!}
*For Caleb to continue being resilient and brave.
*For Benjamin, Andrew and Elise to have hearts to love and minds to understand as best as they can as we walk through the next few months.
*For Patrick and I as we make decisions -- wisdom, deep unity, love than will meet all needs, peace and for strength.

Here's how you can praise God:
*There's only ONE suture that is fused.
*Caleb has been such a champ and is doing so great despite everything.
*We have seen such love and kindness from so many people = people are providing and caring for us so tangibly and through prayer and encouragement!
*We were able to get into appointments quickly and schedule a surgery date that was best for our family.
*We have family that quickly, gladly and willingly made arrangements to come and help us!
*We have friends setting up meals, extra hands, medical advice and so much more before, during and after surgery! Wow!!!
*God has been so faithful through all of this.  He has been our rest, strength and peace.  Praise Him for being so real to us right now!

I'll keep you updated as things get closer and as we move forward.


young wife&mom said...

just prayed through your list and will continue to do so!

Lauren said...

Love you, sweet mama, and your family, too! Will keep you in our prayers! Thank you for your testimony of the Lord's faithfulness! xo