Pre-Op Appointment 7.1.13

This morning we met with Dr. Keating at Children's to prepare for Wednesday's surgery. We had an 11:00 appointment and were seen at 1:30. The man's incredible bedside manner is apparent in that he is almost always running very behind with his appointments. The only thing that kept us patient was knowing that he wouldn't rush us and would answer our long list of questions. And also that we would from now on always get his earliest appointment possible :)

We were first seen by a physician's assistant to get general information on Ryan's health. They of course just want to make sure that he's healthy going into surgery. Other than a minor case of thrush and some eczema, he was cleared. We were also given a consent form that was painful to read. I know they're just trying to cover their legal butts, but making a parent sign off on the possibility of a coma, stroke, etc. etc. DEATH is just cruel. Understandable in this day and age, but cruel nonetheless. Dr. Keating assured us that many of the things written down are incredibly rare ... but I wanted to interject and say "yes, but so is the incidence of a baby having cranio and a hypospadias." But, like I preach, positive thinking.

He explained that on the day of, here's what to expect:

5:30 am: we show up with Ryan. He can't eat solid foods after midnight (I wouldn't call what he eats solid food, but I knew what they meant) but can breastfeed 4 hours before showing up.

7:00: they will take him back to get ready for surgery. We can go with him up until he goes into the operating room. They will use a gas to sedate him and then once he's down, put in the IV, breathing tube, etc. They will come and tell us when he goes into surgery. Dr. K said to not be surprised if it's an hour between when we drop him off and when he actually gets started. He described the procedure again and we were delighted to hear that babies typically only lose about two tablespoons of blood during this procedure and that he can quickly "plug" any bleeding (clearly my own medically-correct term). There is about a 25% chance that he'll need a blood transfusion and in that case it will be on hand. I originally wanted to see if we could get his blood type and then have a family member donate, but he assured us that it was okay and that the blood that Ryan would be getting would likely be screened better than our own and that it would be safe. I asked him if his brain would be touched/seen (I know very little about the anatomy of the skull) and he said that it's very rare that they cut through that far. It would also be rare to see any spinal fluid leak out. But again, he'd be able to plug it up. When it's all done, he will come back and get us, let us know how it all went, then take us to the ICU to see Ryan.

For the first day, he will be kept comfortable with valium and morphine. I was really concerned about this because he's in that active, crawling, grab everything stage of babyhood. I couldn't imagine how he'd handle a bunch of tubes hanging out of his body. He will have his IV, a drainage tube from his head, and a catheter. He said that he will be very mellow.

On the second day, they will "painlessly" remove all of the tubes and he will be more free to move. He wasn't positive on whether or not we'd get to hold him on Wednesday but said Thursday we would be good to go. At this point, they also will likely move us out of the ICU into a private room. He warned us that Ryan would look pretty rough on day two and that the swelling could be pretty bad (even swelling his eyes shut). I read on another blog that there was no purpose in looking at pictures of other kids post-surgery because there's no way to prepare yourself for what your baby will look like. I can't even begin to imagine.

After the first day, Dr. K said that the pain will be able to be managed with Tylonol. Awesome! Because watching your baby in pain and not being able to help is pretty much the worst thing you'll ever have to experience.

If all goes well, he will be discharged on Friday and will have a follow-up in about a month to check on everything.

We left the appointment feeling ready ... not necessarily better about it all ... but ready. We had to take Ryan to get a pre-op blood draw, which made me so thankful for the fact that he won't have to be awake for an IV insertion on Wednesday.

Dr. Keating described the people who draw the blood as "vampires" who do an amazing job and for the most part, he was right. He cried a lot, but it wasn't as bad as we thought it'd be. 

I remember writing the big date on the calendar and thinking it's so far away and yet it's already here. I'm experiencing the biggest mix of emotions - excitement for it to be over and obvious fears of the worst. It's been six long months of this day looming and countless hours have been spent fretting and fearing this day. I've spent a lot of time crying and dreading the moment where they say that they need to take him back to the operating room. For me, this is unfathomable and I don't know how I will be but I don't think it will be pretty. But all we can do is stay positive and hope for the best.

One very bright thing that happened this week was that we got a care package from the Cranio Care Bears. http://craniocarebears.org/ is an organization created by two moms with cranio kids. Their mission is to spread awareness about Cranio and help relieve the stress from families going through it.

Among the care package was goodies for the hospital (for Ryan and us), a checklist of what to pack, and a hat for him to wear after surgery.  They also included a prayer chain to put on his hospital bed filled with encouraging and inspiring quotes. We will definitely be paying it forward to this organization and have considered setting up a collection of donations to send back to them in honor of Ryan's first birthday.

Ryan especially loves these "Click Clack Keys" that they included.

It is the kindness of this organization, our friends, and family that have kept us going. We thank all of you for the continued support throughout this bumpy ride.