Chiari Malformation and Syringomyelia surgery day and day after

So, those that have done this you'll remember some of the things.

For the ones wanting to know what it is like.....well, here it is.

We had to arrive to the pre-operative check-in at 6am.  I thought many times the night before about not doing it.  I woke up every hour completely stressed out.  The time came and we arrived at the hospital.  The walk to the hospital was so terrible, because I felt really bad about what was going to happen to them.  A mom's guilt that while I know it needs to be done, I can't help but wonder about running away from it.  But with Chiari, there's no where to run.

The night before arrival I had to bath the girls with special soap and wipes.  I also had to braid their hair.  My heart was heavy as I prepared them.  One day when they read this story, I want them to know the truth is if I could have figured out something better I would have.

So, we checked in and the girls were pretty happy.  Olivia was worried all the night before about the "mask" they have to wear to get their anasthesia gas.  She didn't want a "mask" because after having 4 mri's (a whole other rant about why can't they just do 2 instead of 4), she hates the process!

I was so anxious that when the people had something wrong on my paperwork, I bit their heads off!  I also was annoyed that my husband after 19years still can't read my mind.  My head was just spinning with thoughts and emotions.

Then they took us back to the room and they had the girls wear a special warmer suit that increases their body temperature so that it activates the immune system.  

Then afterwards they gave Olivia some versed so that they could take her back to the OR.  Unlike the MRI room you have to let them take your child.  But they did it with the drug and she wasn't afraid.  Here is me holding her and it is the worst pic of me but this post is the unedited version :)

Yes, I was crying my eyes out here, but holding back what I could as the hands went out and they took her away.  I found it hard to breathe.

The wait was long but then they came for Abri and Olivia was done and we went to see her in recovery.  

She was perfect.  Then I lost it!  I was such a mess.  But her nurse was wonderful. Told me details and had her nodded yes and no.  She was awake but on drugs.  That felt so good to have her responsive. Before I knew it the girls were in their own rooms they looked like this 

And here's what I looked like right after they were in their rooms.

The first night was no picnic for Abri.  She is naturally more sensitive to everything.  But she did good except she was admit to get her catheter out.  Here I would think her head would be the issue but no it was her pee.  She was so uncomfortable that they took her cath out. She was so scared it would hurt to pee she fought going on the potty for 45 ins to an hour! I was with Olivia and she was so comfortable she just slept all night.  I went to help with Abri. She was talking so much and so overwhelmed but she was herself. I asked her "what would your teacher do"? She replied "call you"! After a while the nurses left and me and Abri were in this situation of needing to pee. If she didn't go within 6 hrs of the catheter coming out she would have to get another one. So, I tried everything we all did. Finally, I said "let's go you pee in that pot right now missy" and she did! She immediately relaxed and went into bed and got me d's and went to sleep.

Matthew and I switched back to me with Olivia him with Abri. Olivia never roused much but she stayed on the morphine but she was in pain and needed it. I could have slept (as well as you can sleep in a hospital) but I couldn't sleep. I was very overwhelmed feeling regret like I made the wrong decision. 

Next morning Abri comes wheeling in the room to visit us!

She was smiling and upset because she wanted to walk around. She had been walking but wasn't steady on her feet. Basically, she was only in bed for a matter of hours before she was walking after a brain decompression surgery!

Olivia wasn't doing as well, but Dr George had to do more to her. I was feeling very sad and worried about Olivia and Dr George came to check on her and said to me "how many hours has she been out of surgery?" I said "less than 24". He said give it more time she was doing great. The day went on and Olivia was able to get off morphine a little more each time.  Other drugs were substituted. Her eyes perked up and they took her catheter out and then I got to hold her.

And I'm never letting go!!!

That evening I would hold her for hours turning her slowly moving her slowly and just loving on her. 

This is 3am. Bright camera flash!

Then the next morning Olivia woke up and seemed good but she was very scared about moving out of bed. She had used the potty a few times but then stood to use it and had a leg pain and we had a short lived setback. So, I couldn't do anything to convince her to stand. I asked for physical therapy.  There were two of them and they came and talked to her. Olivia refused to cooperate and then they had this magic puzzle. The puzzle started on her bed table then the table scooted further away then they placed the pieces all over the room and I watch Olivia bend and go up on her toes and move to Put this puzzle together as fast as she could!

We went from our room to Abri's room! Then she just crawled up on the bed like normal. Thank you PT! We then saw our friend Morgan who we met on Facebook and she also had her surgery done by Dr George. (I posted a pic of her on the previous post.) She was coming to say goodbye because she was discharged and Dr George was also there discharging her and coming to see our girls! We talked to Dr George briefly and he is thinking a couple more days just to ensure they are doing good. He wants us to stay at Ronald McDonald House for a couple more days to make sure they are good before we drive back home. 

Here's a pic of all 3 girls. Cuties! 

The rest of the day has been coordinating new mess and right now Abri is just on Tylenol.  Olivia is still on a pain med but should transition to Tylenol tomorrow or the next day.

Abri has been so busy. She hasn't let any of this slow her down. If she got bored she would go hang out with the nurses. We didn't have one bad nurse. All of them are amazing. Abri painted, played video games on the wii, walked around visiting other rooms, hung out with Morgann, checked on Olivia, notified us instantly if she had a problem or someone else did, went to the playroom, made sure everything got wiped down, went to the familyresource library for movies and a book, whew.....that girl didn't let any of this slow her for a second!  

It has been long, hard, sad, happy, scary, but looks like it's been worth it. Vomiting is common with these surgeries due to the area of the brain being manipulated. However, Abri threw up once we think from too much medicine at once on an empty belly, Olivia threw up first day a few times but not badly (no excessive heaving). They did a great job with different medications for nausea and we had no issues really. Abri didn't have duraplasty to but Olivia did. Dr. George harvested Olivia's own tissue from under her scalp so that's why hers incision is a little longer. 

So, what does the back of their heads look like now? 

And their hair still looks good!

We are looking forward to night 3 now as we are going to get good rest. And the girls? They are crawling all over the room and playing with playdough. You wouldn't ever know it's only been 48 hours.

Praise our savior Jesus Christ!