Finally we will have some answers, sure they might be followed with more questions but at least we are getting somewhere. It's just hard not knowing what will happen to your baby!
So here they are:
| Is only her Metopic suture closed? |
| Do you consider her case mild/moderate/severe? |
| Will you do a CT to confirm the diagnosis? |
| Do we need to see a Geneticist? An Ophthalmologist? |
| What is the chance of this happening to another sibling? |
| Will she have traditional (CVR/FOA) or Endoscopic surgery? |
| Will she have to do helmet therapy? |
| How soon will the surgery be done? |
| What is the chance she will have to have a blood transfusion? |
| Do you use Procrit injections to reduce the need for a blood transfusion? |
| Can we donate blood for a direct transfusion? |
| Is it true if we donate blood we cannot donate an organ in the future? |
| How many appointments will we have between now and the surgery? |
| How many follow up appointments after surgery? |
| What are the possible complications from surgery? Brain damage? |
| What is the chance of a second surgery being needed? |
| What are the possible risks if we choose not to do the surgery? |
| Will she have any problems with her eyes? |
| Will she need blood work done prior to surgery? |
| Is there a time she should not feed prior to surgery? |
| How long does the surgery take? |
| How long is the hospital stay? |
| Will she be in intensive care? |
| Harper is exclusively breastfed. Will I be able to stay with her in ICU? |
| How soon can I breastfeed after surgery? |
| Are other visitors allowed? |
| What kind of pain medication will be used? |
| Will you shave her hair? |
| Where exactly will the incision be? |
| Will it be a straight line or a zig-zag? |
| Will you use stiches or staples, are they dissolvable? |
| If the stitches are dissolvable, how long until they dissolve? |
| What type of anesthesia will be used? |
| Is the brain ever touched during surgery? |
| How long will she have bandages on her head? |
| How badly will the swelling be and how long will it last? |
| Will she have black eyes from the swelling afterwards? |
| What type of pain management will she have? |
| What kind of medicine will she need to take once she’s home? |
| How long will she be sore or need medicine once she’s home |
| How long will we need to be incredibly cautious with her head? |
| Can I pull clothes over her head? If not, how long should I wait? |
| How do we care for the incision? |
| When can we wash her hair? |
| Will we have to change her sleeping arrangements? Pillows etc. |
Hi, I found you through the CranioKids forum.
ReplyDeleteThis is a great list of questions! I will be asking some of them to the doctor we're going to see on Monday.
Thanks for posting it!
Hello, I stumbled upon your blog and it is so familiar to me. My son Tanner had CVR to correct his metopic synostosis almost 5 years ago. I have all of these answers. They are great questions. Please feel free to ask me anything you like. I was able to find a sponsor through Capps Kids before his surgery and it helped me tremendously. Especially the pictures of babies post-op. Bless you, and I know exactly what you are going through. Hugs.
ReplyDeleteRochelle, Tanner and Eli's Mommy