Wow it’s really been a crazy few days. I feel like Wednesday was so long ago, that when I think about stopping to recount the last few days, it is somewhat overwhelming (but I will give it a shot).
This journey really started before Wendy was born. Here is the short version of how we arrived at this week’s surgery.
Before Wendy was born they were worried that she may be too small, so they ordered an in-depth ultrasound. This ultrasound revealed two things: 1) Her size was nothing to be concerned about 2) She had what appeared to be a cyst on her cerebellum. This cyst can be an indicator or a severe brain disorder called dandy-walker. They decided that after birth they would perform an MRI to determine exactly what was going on inside her brain.
Jump to 6 months after her birth we had our first MRI at Children’s Hospital in Seattle to take a look at the cyst. This MRI also revealed two things: 1) The cyst on her cerebellum was nothing to be concerned about 2) She had another “cyst on her skull
Jump another 3 months and we decided to go ahead and remove the “cyst” Which leads us to this week.
On Wednesday we went to Children’s for Pre-op appointments. We met with one of the Neurosurgery nurse practitioners who told us about the surgery and what to expect before and after. Then we has an appointment with the nurse practitioners for the anesthesiologist. They did a lot of the pre-screening questions and told us some more about what to expect.
Thursday morning we had to be at the hospital at 6:15am, although this was REALLY early, it was nice because it limited the amount of time that Wendy had to not eat (which she was not thrilled about anyway). When we got the hospital it was very quiet, with only a few other family there. Wendy was both hungry and tired, she was not in a very good mood, but she did alright, considering.
The Before Picture
They came in and had me wipe her down with 2 special disinfecting clothes, which she did not appreciate, and we put her in her cute little hospital gown (which I brought home, even though I’m pretty certain you are not supposed to).
Next, someone from the neurosurgery team came and drew with a marker on Wendy’s head, marking the location of the cyst. We tried to get a picture.
If you look in the bottom left corner of the photo, you can kind of see it.
We waited for a while as various members of the surgery and anesthesiology team came in and introduced themselves.
Next we took Wendy over to the MRI prep area and I held her in my arms while they put the mask over her mouth and put her to sleep. She was screaming, which helped the gas to work very quickly. I laid her on the table and gave her some kisses and then we left so that the doctors could begin putting in her IV’s, Central Lines and breathing tube.
The hospital gave us a pager that kept us informed about when they were starting the surgery and when the surgery was over.
First, Wendy had an MRI, which took about 30 minutes. Then there was an hour and a half of prep between the MRI and the surgery. An hour of surgery and then a CT scan.
After the surgery was finished Dr. Ojemann came out and told us that the “cyst” was a large boney mass. They had drilled and chiseled it away and were very happy with the results. They did have to take some extra bone from another spot on her skull to fill in some of the gaps. But everything had gone as planned.
They told us it would be about an hour before we would be able to see her, because she was still asleep in recovery.
It turned out to be about 2 hours before we saw her. There were two reasons for this. The first is that she was very grumpy (either because she was in pain, or because she was hungry) they weren’t sure which one, so they gave her a bunch of morphine to calm her down. The second reason was that she was having some trouble breathing on room air so they were trying to level out her oxygen. When they finally brought her in, she was very unhappy, but she calmed down once I gave her a bottle.
She was still having a lot of trouble breathing, I could feel the crackles in her chest every time she took a breath. They called a respiratory therapist who was fabulous. She came in and came up with a plan to give Wendy a steroid treatment for the long-term and they did a special epinephrine treatment for some short term relief.
They warned us that the epinephrine treatment would give a short term burst of crazy energy and boy did it! She finished the treatment a stood up and started moving all over the place, she was touching and trying to eat everything she could see! She wasn’t holding still at all, it was crazy.
And as quickly as it came, it was gone and she was back to sitting and whining. She was very sleepy, but couldn’t sleep in her bed (It was hard to navigate around all the cords and things. Plus, we were sharing a room so there were a lot of people in and out. The only way she would sleep was if Mommy or Grammie were holding her and even then, she only slept for an hour or so at a time. (It was a long night). We took a lot of walks down the hallways in her stroller with her IV poll, she really enjoyed being out and about.
The next morning, we were exhausted. My mommy had pulled most of the night shift so that I could get some sleep, which was super helpful. The next morning Wendy ate some cheerios and we all decided that Wendy would probably do much better if we could just get her back to her own house. The doctor’s did their morning rounds and they said that they wanted her to stay a few hours just to make sure that her breathing would continue to improve even after the last steroid treatment wore off and they wanted to make sure she could poop. (Both of which were accomplished).
As soon as we got in the car Wendy was much happier, she started smiling and playing. And she finally fell asleep. First we went to my mom’s house and Wendy was thrilled. She just wanted to get down and crawl around. (She was definitely tired of people touching her).
When we got home she slept from 6pm – 12am and then from 12 – almost 5am and then again until about noon. (She was catching up too.) And as I type, she is asleep once again. She must be happy to be home! And so am I.
We have a wound checking appointment in two weeks and then we have another appointment in six weeks to do an MRI to see how everything is healing up.
So, that’s my longwinded story. If you made it this far, congrats. If you just skimmed through the pictures, I don’t blame you (that’s probably what I would have done too).
The following pictures are not for the faint of heart or weak of stomach.