Paige's Surgery

The goal at birth was to try and make it as long as we could without surgery. When I was pregnant with her I always assumed she’d be coming out and then a day or two later she would have surgery. It wasn’t until we met with her neurosurgeon just before we had her that we learned it could be an option to go home with her before surgery. What a blessing.

Paige’s neurosurgeon was pretty confident we could make it a month before surgery. If we could make it at least that month Paige would be a candidate for another surgery that would prevent a shunt. That was the goal. Really if she needed surgery earlier though we would have done it.

one month old

Paige made it a month. An exact month. April 5 she had a check up with her neurosurgeon up at the Children’s Hospital. Up there it was decided that it was surgery time. Sooner rather than later. They hunted around for OR time and got a slot for April 10. It was a relief knowing we had a surgery date. And hearing that she was a great candidate for the ETV/CPC surgery. (No shunt)

She got the same pre op bed that Max had!

Endoscopic Third Ventriculostomy/Choroid Plexus Cauterization (ETV/CPC)
This procedure is where they go into the third ventricle of the brain and poke a hole in the floor of it. This allows fluid to start flowing out of the brain and down the spinal colum and absorbed into the body. (Very similar to what a brain/body typically does). Then they go to the choroid plexus (this is where the cerebral spinal fluid is produced) and they cauterize them to reduce the amount of spinal fluid that is produced.
So in the end it allows the body to circulate the fluid “naturally” and not produce as much fluid so the brain and body can keep up.


 Up front we had a lot more “risks” associated with surgery but in the future risks are minimal and there won’t need to be repeated surgeries. Where as a shunt is very minimal up front but in the future you are guaranteed revisions and replacements and risk of infection is higher.

ETV/CPC is Still newer and not everyone is a candidate for this surgery because of arteries and tissues and placement of your brain tissues and such. There are only 5 doctors in North America that do this surgery and we are lucky enough that our surgeon just happens to be one of them. (BLESSING)

Paige’s surgery lasted just over 3 hours. Everything went really well and her surgeon was able to do everything he needed. (BLESSING). He was quite pleased.

Recovery in the hospital was good. Her first night was the worst. When we first saw her she was awake but still very much zoned out. She knew we were there but you could tell the cloud of drugs was still in her system. When we got to the PICU she was still doing great. Around 9:00 that night (we saw her and she was out or surgery around 6:30pm) she started setting off monitors and bells and whistles. It’s quite unsettling to see a nurse come in and start poking and rubbing your baby vigorously. Her heart rate kept dropping and after the rubbing and prodding it would jump up. But then a couple minutes later it was dropping. It was happening enough the nurse wasn’t leaving the room anymore and was calling another nurse to go get the doctor.

Talk about a panic attack. Doctor came in and was a bit concerned as well. She figured it could be 1. Paige working off the anesthetic or 2. A brain bleed

So they ordered a CT scan pronto. Yes I started to get all shakey and scared and worried. Up till this moment I was very calm and filled with Peace. I knew all was going to be fine and okay. But in this moment I let my guard down and started thinking the worst. It was the horrible dark sinking feeling. They took Paige off for her scan. I sat with Dan for a bit scared and misty eyed and worried beyond belief. I got up and went to the bathroom and walking in their and turning on the light I knew what I needed to do. I prayed and prayed and slowly that peace and that comfort I had all day long came back. She was going to be fine. (BLESSING)

She came back about 15 minutes after they took her and said we would know the results in a few minutes. Guess what? It was fine. No brain bleed. Just the anesthesia working it’s way out of her tiny system. The trip to the CT scan she was screaming at them. And she came back angry. (BLESSING)


The nurse was happy about all that anger because after those fits she was throwing all the monitor readings were in the acceptable range again. (BLESSING)

LOOK at those eyes!!! so alert and awake!

Dan was able to leave around 10:30 to head home to the boys and work and Paige and I hung out. She was still a bit fussy throughout the night but no where near scary. She calmed considerably more when they started feeding her. But she was stubborn and we had to re introduce it slowly. She was so hungry she’d stop breathing and just inhale her food setting off monitors and making the nurse and I hold our own breaths. But she got the hang of it again in no time and we got to check out of the hospital on Thursday. (She had surgery Tuesday) we stayed at Tony and Sassa’s again till Saturday. (BLESSING) Our doctor wanted us to stay close for a ew extra days just in case we needed them. I was happy to take some time to just chill and relax.

gah! shes so pretty! attempting holding up her head!

Guzzling some milk!

ZONKED!

We came home Saturday and she has been doing great. She has been more alert and seems to hear and see better than before surgery.

I love this little girl and all the blessings and miracles that are coming our way. I have never felt so blessed and loved. This little girl is going to do great things.