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!

We'rrrrre Heeerrrre! Welcome to Austin Ronald McDonald House!

So, we got to Austin, TX in record time this trip!  We came straight to the Ronald McDonald House.  It was very un-nerving at first.  I mean I have no idea what I'm waling into.  My mind wondered if I was walking in to a quiet place that had a bunch of sad parents and ill children.  As we walked down the sidewalk we saw a playroom and a playground.  That definately made the kids happy!

We checked in at the reception area and then went into a room where we signed a form and watched a "movie" about the rules for the RMH.  Basically, they rely on a lot of volunteers to help with cleaning and such.  People volunteer to cook or bring food by.  They told us sometimes people don't show up to cook for various reasons.  Also, there is NO food or drink allowed in the rooms except water.  I think that helps keep it extra clean.

We brought in our bags and then we left to go get a few personal items and some dinner.  When we arrived back, they had some volunteers that dropped by dressed in superhear costumes and delivering "Love your Melon" hates.  How appropriate right? For kids going through brain surgery, seems appropriate :)

So, there was a good crowd of parents and visitors and the fun hero volunteers.  Some of the heros played with the kids and one guy had a guitar and sang songs.  It was like a block party!

As we were sitting and watching the girls play with various toys and kids and heros....our Facebook Friend Debra came by to give us the report about her granddaughter Morgann.  Such a coincidence that all the girls are having surgery the same week!  Anyways, Morgann did great and they were keeping her pain managed well and she went straight to step-down unit.  She was eating and drinking about two hours after her surgery, and had not vomited at all.  So, I thought that was fantastic!  Debra didn't stay long she was in a hurry to get back to the hospital (don't blame her).  She said they told her to prepare for five days.  I had no idea what to prepare for so I packed for a week.  Fortunately, RMH has a laundry room that doesn't require money (what a blessing huh? it's the small things!).  Also, speaking of small things....there was a RMH bag on our bed with a small pillow, blanket and some hotel size shampoo/toothpaste, etc. in it!  I was happy to see that because I was thinking about how I didn't bring a little pillow for the hospital room, so again...the little things!

Back to the subject, here is the little girl Morgann (Debra said ok to share).  She is very comfortable according to the recent facebook posts and the pic below is from her fb page.  I'm so happy to hear she is doing so well.

So far, as many tears as I have swallowed back talking to RMH employees and Debra, I have to say RMH has made that easier.  I have only been here a matter of hours, but there is something magical here that makes you feel like a family.  I'll have more to come but here are some pictures of the place!  (in the pic where my daughter is holding a tissue, she had a nose bleed...she wasn't crying!)

 

More to come.  I'll probably post more pics from the RMH tomorrow after our pre-op appointments at the hospital and the neurosurgeon appointment for surgical consult.  Prayers for all the girls are needed! Thank you for your support!

5 days until we leave for Austin

I'm actually starting to look forward to next week.  Because it is here.  The waiting is horrible.  The over thinking everything is even worse.

So, today I got a call from the pre-operative scheduling to get us on the schedule for 11am for bloodwork and a ton of questions for anasthesiology.  I am getting numb to it all.  The first time they called to schedule the surgery I cried while scheduling it on the phone.  Several calls later to docs office, hospital, billing, insurance, Ronald Mcdonald House and today the pre-op.  I think the plan is to wear you down as a parent until your just going through the motions.

I don't really have any cool pics on this post or much news.  We are going to try to have a super fun weekend and I'm going to prepare on Monday with a packing list and get suggestions from people that helped make their lives easier.  I broke down and bought a tablet for our time up there so we can get on the internet and it not run down our cell phones.  I sure hope they have internet connection in the rooms there!  I didn't even ask!

I did run across a blog that was so helpful to me because this family used the same Neurosurgeon we are going to use.  Here is a link to her blog and they seem so delightful!  http://wordsofhisheart.wordpress.com/category/andres-chiari-1-malformation/

Like I said, I needed to read about some kids having such good news.  We are also looking to meet another family that is going to be there at the same time as us.  We will arrive on the 18th which is the day this girl that is 5yrs old is having surgery.  I think Dr. George does these decompressions A LOT.  I know he is participating (or maybe doing his own) research study.  He has mentioned it to us more than once.  Nothing registers on every visit 100%.  I will say that navigating the scheduling and imaging and insurance is 75% of the battle.  I think the surgery is only 20% and the other 5% is just your parental thoughts.

I'm praying for supernatural strength and wisdom.  I also am praying harder that we have only ONE surgery and a perfect surgery and all of the headaches, symptoms and syrinxs will be healed in Jesus Name!!!!

Thanks for agreeing with me in prayer!  We just wish happiness, health and so much love to everyone following.

Hugs ya'll

17 Days until our Pre-Operative appointment

Oh it is hard to believe that our day is fast approaching!  June 19th the day before our Surgery.  My mind has been racing about how to get better neurosurgical care for children in Tulsa, OK.  I am bothered by the lack of care readily available.  I understand some neurosurgeons rotate to Tulsa, but Tulsa is not a little city!  I think we should have our very own surgeons HERE.  Right in town.  I did try the Oklahoma City route, but I found the techniques outdated.  I am blessed to have private insurance that allows me to travel to see a specialist that is doing research and studies in Chiari Malformation.  I have also learned that Dell Hospital built a specialized neurosurgical suite for their littlest patients.  After our adventure on this, I will be pouring any extra moments I have into trying to gain momemtum to get our Oklahoma Children the same benefits!  Right here in Tulsa too!  So, please, for anyone out there reading this now....if you know of ANYONE that can help put this together, please comment information to me!

Ok - so enough of that rant.  Here is some awsome pictures of the littles.  I'm trying to do things, without going out too much because they have to stay 100% healthy before surgery!  We go outside a lot these days :)  Trying to stay distracted is harder now that school is out.  God is keeping us strong.

Swim clothing and rain boots!                                    Best Buds

Olivia's Mean face

                                                         

                                                       Mom and Dad

                                                           Trying to get Selfies with Mom ! LOL

                                                          Oklahoma Wind

                                                              So hard to let them go!!!! I trust God!

    We will defeat Chiari Malformation and Syringomyelia!!!

Thank you for praying for us!  We need all we can get!  Love to all of our fans out there! 

Last Day of School a thank you to the staff

So, my first grader is having her last day of school today.  Fortunately, her oldest sister was able to go with her to help out.  They had some bouncy houses and she cannot do those with Chiari.

I am so thankful for all the staff at her school, but especially nurse Paula and her First Grade Teacher Mrs. Y--k.  In fact, Abri wants to be a first grade teacher when she grows up!  She told us short people make great teachers.  She is excited about her yearbook and I think she is going to greatly enjoy seeing all the familiar faces from school of other kids and staff.

I want to apologize to the teacher she gets next year.  This is because we are currently and will probably continue to spoil her rotten all summer!  :)

Abri has lost her first upper big tooth.  The other one is going to be gone soon too.  My toothless sweetie is getting so big.

I look at her and think about all the good days she has without headaches and neck pain and swallowing issues and leg weakness.  Then she has breakthrough moments that are severe for her and I know we are doing the right thing.

Here is what Abri's Chiari looks like right now:

Here is a picture from the chiari institutes site:

Abri does not have the syringomyelia (unlike her 4yr old sister Olivia), and that is another reason to do the surgery.  We never want her to get it either.

It is hard to tell that Abri has Chiari because she seems fine so often.  Here is what happens when her neck is flexed and extended:

Do you see how that "Chiari" which is really the "tonsils" of the cerebellum get pinched in there?  See how her brainstem gets "knocked around"?  That's what causes all her weird symptoms all over her body!  I cannot imagine how crappy that would make me feel all the time every time I moved my neck around!  I think Abri's beautiful smile is what keeps us from remembering that herniation is restricting her CSF flow.

As this month of May ends, we look toward a surgery that is getting closer.  I am writing a lot about this now, so that in the future when my kids or others ask me how I did it, I'll be able to remember!  Some days seem to run together.  Keeping ourselves totally occupied with business is the only way to avoid obsession about this situation.

Today, Olivia was dragging her feet on the carpet.  Her legs were hurting again and last night Abri was crying over the inside of her head feeling too full she will say.  She says it is like a balloon.  I worry some about Abri and Olivia's head pressure, but I know that God has it all in his hands.  Somehow, hearing these complaints helps me to know that we are doing the right thing, and I think that is how God comforts us in a strange way.

We cannot wait to get past this surgery and DEFEAT THE DEVIL AND CHIARI ALL AT THE SAME TIME!  What a testimony we are going to have!!

Thank you for all the people praying for us.  We love you all.

More on Instability, Syrinxs/syringomyelia and surgery in 30 days

So, we took Olivia to get her CT scan done.  She was NOT happy to be going :(

Dr. George ordered the scan in order to check her anatomy for "instability".  He did not specifically say anything about the retroflexed ondontoid that I have wondered from the "hill" on her MRI.  I'll be asking him about that at our next visit, scheduled the day before surgery.

Olivia did GREAT for the CT.  NO SEDATION!! That's a first.  I wish the health insurance companies would just pay for the scans all at once instead of having to go 4 different times!  Here is a picture of her during the scan:

                                                              So brave with Daddy

Abrianna is scheduled for a craniectomy with great hope that she doesn't need anything else, but we are having to give consent for more things.  I guess when you have a surgery like this you have to consent to let the Neurosurgeon do whatever it takes during surgery. 

Olivia is scheduled for a craniectomy, duraplasty, and laminectomy in order to get her Chiari Malformation Type 1 and Syringomyelia under control.   I have requested that they harvest Olivia's own skin for the dural patch rather than use a foreign patch that could cause complications if her body rejected it.

Both surgeries are scheduled for 90 mins each.  I am thinking that Abrianna's should be faster should they only have to do the 1 thing. 

 For those who are new to the blog and havn't seen the pictures posted of what the MRI looks like currently for Olivia:

Her Syrinxs are very large.  So large, they saw them on the CT scan.  Here is what Olivia's CT scans looks like:

3D is so cool Right?  Anyways........According to Dr. George, Olivia's bone anatomy looks great and he is not worried about instability.  I am going to specifically ask him about retroflexed ondontoid at pre-op appointment the day before surgery.  Praise the Lord for good news finally!  But I looked through the images on the CT scan several times and I could sort of see the syrinx when I adjusted the brightness but I definitely had to know what to look for because I really can't see it on the images at all!

That makes me even more concerned for her because of what she has gone through.  I remember when she was 3 she would say all the time "I'm not feeling good" and "My neck is beeping".  :(

Well, both girls are scheduled for surgery on June 20th in Austin TX with Dr. George.  It is extremely stressful. 

I'm looking forward to having this fixed and moving past this.  Every year I say "I just have to make it to Christmas this year".  Currently, I just wan to get through July 4th.  That is two weeks from surgery and Independence Day.  I am going to celebrate July 4th as our independence from Chiari.  Everyone says that surgery is NOT a cure and I know that.  However, knowing that we are working to get rid of the syringomyelia is independence.  Working towards reduction of neck pain and headaches for Abrianna as well is independence.  Freedom from disease.

I am being told this is going to be harder on me than my children.  I sure hope so.  Currently, that is definitely the case.  Can't even look at them without my heart sinking in, with a sharp pain that immediately jumps into my throat.  I swallow away the tears so that I do not worry them.  Sometimes they look at me and say "what's wrong mom?"  and I just tell them "I have a swallow stuck in my throat". 

Amazing that your kids can see right through you right?

Well, that is the update for now. Here's a pic of my Chiari warriors with their sisters.  :)