Surgery, Again

So, we're back in the hospital.

We came in for a post-op follow up from April's shunt revision and after reading the MRI's, decided her shunt isn't working.

Our neurosurgeon is now considering her for a procedure called a third ventriculostomy. It would basically create a path for the cerebral-spinal fluid to flow on its own, eliminating the need for a shunt - since her body apparently doesn't like them anyway.

An MRI tomorrow morning will tell us more. They'll take her straight from MRI to surgery and depending on what they see in the MRI either do the third ventriculostomy or just a shunt revision.

They also discovered that part of her one ventricle had closed itself off from the other part of the ventricle. So they're going to fix that while they're in there.

For now, they're putting off the full craniotomy they had talked about as a possibility to repair a dura leak. The hope is with less pressure, the dura will heal itself. So that's the good news. 

The super crappy part of this is that Mike's brother is getting married on Saturday and we were really looking forward to celebrating with them and hanging out with some good family and friends in the upcoming weeks. We're taking it one step at a time but really striving to still be in attendance at the wedding. 

Please say some big ol' prayers that the third ventriculostomy is an option and works so we don't have to deal with this shunt business anymore and that Abriana stays the super healer she's always been and we're outta here as soon as possible! 

Follow-Up

So we had every appointment under the sun today! It was nice to get it all done in one day and have Mike there to help, but it's been a long day.

First up, we met with the plastic surgeon. He said everything looks great and took off the steri-strips. We asked about the bump on top of her head, along her incision and he said it's bone that he grafted there that will eventually level out and blend in. They took some pictures, said see you in 6 months, and we were off to our next appointment across town.  

Last picture with the steri-strips. 

Next up was hematology. They did the usual height, weight, and paperwork. Upon review by the Hematologist, clinically she looks fine. The blood clot isn't affecting the coloring or temperature of her leg and foot. So the doctor wanted an ultrasound to review the clot's status. They managed to set one up with radiology over in St. Pete. Making it appointment number five of the day.

Hands are delicious even in the hematology office.

We then went next door to get an MRI. Abriana screamed for ten seconds and I thought that going in with her was going to be a terrible decision but then she fell asleep. I was seriously comforted when she was zonked.

After thinking we lost our blanket and finding it in the car, we were off to All Children's Hospital for our other appointments. A little snooze in the car for Abriana, and we were up to see Neurosurgery. They looked at her and said you look great! Get on outta here! :) We'll see ya in three months! They did show us her CT scan which we later wished we would have taken a picture of to explain to everyone else, but it was a great display to help is understand what her bone structure now looks like.

Nap time.

Next it was down to radiology for that ultrasound where they reviewed the thrombosis in her right femoral artery. And we learned they added an x-ray of her skull to the list. She was very good for the ultrasound but of course screamed for the x-ray. We won't know what hematology has to say about the thrombosis until at least tomorrow. We'll either see them in a week or six months.

Still a happy girl at ultrasound. 

Entranced by the cartoons.

Mike looking VERY pretty in his sparkly purple led x-ray vest.

We then drove around the corner to see my buddy Dwayne at USF St. Pete. He showed us around the new student union and got to snuggle with Abriana. (I swear I took a picture but it's no where on my phone - boo.)

All in all a long, but good, day.

Surgery Day Updates

2:18am - Last feeding before surgery, Abriana went back to bed.

3am - shower, pack the car

4:17am - one last diaper change and we're on the road to All Children's

5:44am - Checked in at surgery registration

6:20am - IV in and screaming

7am - X-rays (shunt series)

7:40am - in MRI - put under for short series

8:17am - Headed to the OR
10am - All her lines are in, getting ready to check out the shunt
10:45am - spoke with the plastic surgeon who is currently watching from the sidelines as they work on the shunt. Arterial line took a long time to put in.
11am - met with the neurosurgeon. Shunt was blocked and was replaced. Now they'll start on the encephalocele repair.
Noon - Plastic surgeon has just begun the repair
1pm - neurosurgeon is almost done with his part and is going to close the dura matter and then the bone reconstruction can start.
1:40pm - talked with the neurosurgeon - he's closed removed the protruding brain matter and closed the dura matter. He's happy with the thickness of the dura. She's had minimal blood loss.
2pm - plastic surgeon is working to reconstruct her nose
3pm - neurosurgeon is done. Plastic surgeon has been able to move her eyes a little closer together and reshape the nose. Multiple people have said what an amazing plastic surgeon he is.
4pm - all the plates and screws are in place. The plastic surgeon is deciding what skin to remove and how to close her up. Estimated surgery completion 5:30pm.
5:10pm - talked with the plastic surgeon, they're still stitching her up but he showed us pictures and she looks great! Waiting to go see her!
6:20pm - she's up in the PICU and we're headed up to see her.

Overall it was a long day but it was made bearable by those who sent messages and prayers and came to visit and cheered us on. The doctors say she did very well. They were able to do a little more in depth reconstruction than they thought they would be able to. So that's great! We expect lots of swelling and crabbiness in the next few days.

She's currently spiking a fever which is normal after brain surgery but needs to come down so they can extibate her.
Abriana 2.0:

New Perspective: Surgery

So the other week I was sitting in church, listening to the message.  It was about being children of God and that's when it hit me. While my daughter may be MY daughter, before she was ever my daughter, she is a child of God.  He dreamed her up and created her.  

I've had so many fears about this upcoming surgery. I know it will be tough.  Tough to see her go through surgery and to see her in pain, when I can do next to nothing about it. Tough to be stuck at the hospital. Tough to trudge through the long road to recovery. But my biggest fear has been losing her. Having some complication and going home without our little girl.  And let me be clear, if this were to happen, I would be devastated. But devastated with sense of peace too. 

She is God's child first.  He created her and one day (sooner or later) He'll call her home. I can only request that He make her return home much MUCH later, but should it be sooner, I must trust in His plan. 

It is this thought that gives me a sense of peace going into surgery.

As I begin to prepare to go to the hospital, every cuddle is precious, every squeeze that much more meaningful.  My fear hasn't ceased to exist but it is contained knowing that God is in control.