I had started to notice about 2 weeks after our ETV surgery that Paige’s soft spots seemed to be fuller. I was a little bit worried and stressed. I gave it a few days and did my best to keep her even more upright and prayed and prayed and prayed. After that few days spell it seemed to be softer so I calmed down a bit. Then I measured her head... it has grown about 2 cm since surgery. They told us after the ETV surgery that her head shouldnt grow much. More plateau then anything. So I figured the 2 cm should be okay.
Then at about 3 weeks post op I measure again and that head circumference has jumped up again on me. And it was at 50cm. The top number that they ever wanted her to hit. Around all this My Mom had notice her bump at the back of her head doing something weird too. It looked like it was a big bruising and that it was growing and spreading. So I called them. And chatted with them about what was happening and how Paige was doing. They decided to bring us up on May 3.
Paige and I went to the appointment. The neurosurgery clinic at the Children’s Hospital is amazing. I feel like they actually know who we are and who Paige is and what’s going on with her. It’s wonderful. So we met with them and did a fasthead(a very quick MRI) and came back to chat with them and talk with the neurosurgeon.
He came in and felt Paige’s head and saw her head measurement numbers and said that we needed to put a shunt in. He didn’t like the growth of her head. And the soft spot was still soft but not quite where he wanted it to be this soon after her ETV.
It wasn’t unexpected but still felt like it came outta left field. He said he would try to get some OR time in the following few days.
Then he took a look at the colouring around her bump and said it looked like hema something (like a stork bite that some babies get). He wasn’t too concerned and said he would poke around it during shunt surgery. Which was nice because she HATES it being touched.
We got a surgery date for May 9 but they wanted to see us on May 8 for pre op stuff and to make sure her head didn’t change drastically in the few days we had between our appointment and surgery. I hoped and prayed it would but deep down I knew a shunt is what was needed now.
Our surgeon gave me 3 options for surgery.
Anterior(top of the head) where her other incision was.
Posterior(back of the head) behind the ear
And to take place in a study to determine if there is a better placement for the shunts. So a computer takes all the kids information and then the computer determines where the shunt should be placed.
Talk about decisions. They said I had until right up to the surgery to decide.
Instantly I thought about the fact that once you get a shunt you typically have one for life. Shunts are guaranteed to work but they are also guaranteed to fail and need revisions throughout them growing up. So I thought about this little girl of mine and where having a shunt might be easier on her.
The back of her head behind her ear came to mind. When they have to shave some hair off it would be easier to hide when she’s a teenager. The downside is sometimes kids hate laying on them and so that’s a bit rough. Dan and I talked about it and it seemed like a good idea.
May 8 came and we went for our pre op check up and talked with them some more about the shunt and what to expect and such. While I was chatting with them I kept feeling like the shunt needed to be in the top of her head. But I didn’t want it there.
I called Dan who wasn’t much help in helping me decide. I blame work. He is so busy in the spring and stressed with work add to that he couldn’t be there for surgery.
I called my mom and told her what was going on. And about shunts and where to place them. She could sense my doubt and frustration. I felt like I had already failed because I thought I had followed a prompting for Paige to get the ETV and it failed. So I was hesitant to make another big decision for my baby. Mom told me to stop thinking like that. I hadn’t made a wrong decision. She said she was praying for me and that I would know where this shunt needed to be.
I knew I didn’t want some computer deciding. That much I knew. Cosmetically I wanted it on the back of her head. It saved her another entrance point too. They only have to make an incision behind the ear and by her belly. The top shunt they have to add an incision behind the ear.
So many choices.
Paige and I stayed with Glenn and Cassandra that night and Cassandra and I snuck off to a movie. (I Feel Pretty. So good!) It was pretty great. Paige slept through most of it.
Got back and put Paige to sleep and then visited for a long while. It was great.
We had some time to hang out in the morning before we headed back to the hospital. Paige had to stop eating at 9:00 and we had to be at the children’s at 11:30. Luckily my mom and Skyler were up in Calgary for an appointment Skyler had so they were going to meet me at the children’s when they were done.
By the time we got there and checked in I felt peaceful that the shunt needed to be up top. It can never go how I want....
Dr Riva Cambrin came in quick before hand to chat with me and see if I made a decision. I told him the top through her other incision. He was good with that. So away he went to prepare.
Mom and Sky showed up and we visited and passed the time. Because waiting takes FOREVER! Finally just before 2:00 it was her turn to go back.
I don’t know how but she wasn’t screaming her face off for food. She had slept on me for a good long time and then sucking on her soother helped too. (Try and get her to take a smoother at home though. Impossible)
Mom and Sky went to the waiting room and I went to the holding room just outside the OR. Met with all the doctors and nurses who would be with her. Even chatted with a lady waiting for her grandson. Which was nice. She was so very kind. She hovered in the back ground to give me space when talking with the doctors but stayed close. I heard her say to her daughter that she thought I was alone so she just wanted to make sure I was okay. So kind. She looked relieved when I said I had my mom in the waiting room.
Doctors and nurses took Paige back and said it could be as short as and hour and a half or as long as two and a half. So I mentally prepared my self for the longer time. Because longer doesn’t mean bad. It’s a good sign of them taking their time. Which is what you want on the head right. And then I could be pleasantly surprised if they finished sooner.
Once they took Paige back to the OR I left for the waiting room. Sat there with mom and Sky and then started talking with the mom and daughter from the OR. As I was chatting with them the doors opened and I glanced briefly even though I knew Paige wasn’t done yet. But it was definitely her surgeon coming through the doors.
My heart dropped in to my stomach. I’m pretty sure he could see the terror in my face. He said no no. She’s fine. We haven’t even started yet. And then he told me about a rash he found on her neck. Where it was then shunt would have to pass under and he was a hesitant to place the shunt in her old incision. The rash could be nothing. But it also could be fungal which could infect the shunt and give us problems. But it could be nothing. So he was asking my permission to go in on the other side on the top. I gave my permission and off he went.
Everytime Paige has gone through surgery so far and even when I went in for my c section I prayed for the doctors hands. For their minds to be open to inspiration and just to be mindful. Him finding that rash and being cautious about it was just another blessing being answered.
Mom Sky and I waited and waited and waited. The worst part. Waiting. I feel I’m always waiting. I should be pro by now.
Very close to the 2 1/2 hour mark Dr Cambrin came back and said all went well. It was nice and smooth. Ran me through some of the after care and what was to expect with the shunt and how it drains and works.
Read up on shunts and you’ll learn there are many many types. They can get pretty fancy with some having magnetic dials to adjust the flow. He said oh no oh no. I put the simplest one in. Less things to adjust. Less things to fail. He said it was the shunt he would want if he ever needed one. The simple plain Jane of shunts. Awesome.
He left and then we all waited and waited some more. Typically it’s been maybe 10 mins after the surgeon comes in and then a nurse comes in and grabs a parent to be with their kid while they wake up. But they never came. So about an hour after he left I went to the desk to see if they could check on my kid. They said if they hadn’t called me she was still sleeping but she said she’d call them and double check. Found out they had just left for the PICU.
So we went down to the PICU where I had to wait some more because that’s a locked down unit and I didn’t have Paige’s code to get in. Gah. Luckily I got in about 10 mins after getting down.
Saw my Paige and she was sleeping. I stroked her fingers and talked to her and she grabbed my hand. She was awake enough to know I was there. So I sat with her for a bit then ran out and ate some food Mom and Sky got and then brought them back in to see her.
I stayed in the hospital room with Paige. Around 9:30 she was starting to be fussy but was still really sleepy. I knew she sees getting hungry but wasn’t quite awake enough for food. Around 11:00 she finally ate even though it wasn’t a lot. It was a long night but no scary stuff. She just slept and occasionally cried out every 15 mins.
Morning we hung out and Phoenix came to visit. Her and I went to visit and then she was able to come back and see Paige and get a nap herself.
We were just hanging out in the morning waiting for an MRI and a shunt series.
She had the MRI around 11:30 and the shunt series around 1:30. Shunt series is just a set of X-rays so the can see the entire shunt from her head to her belly and make sure everything is aligned properly.
Doctors finally gave us the go ahead to leave and we were out of there by 3:00!
As sad as I am that our first surgery didn’t work I’m glad there was another option that will help my little girl out and give her a good quality of life.
 |
| home snuggling Dad. |
Such a precious little girl who has been through so much already! You are a wonderful mom Indie! She is lucky to have you to keep her safe!
ReplyDelete