10 days post op and fireworks!

So, last night was very fun.  We went and saw fireworks.  Lawn chairs, blankets, water, snacks, sparklers and bug spray!  A few tunes off the cell phone radio all equals good times.

    2014


So, all the kids were having a good time.  The wind made it a little difficult to light the sparklers and when one was going well, the others had to be lit from that one.  So, finally at one point I found myself video taping the fun.  However, upon review, its all in the dark on a cell phone so its just audio mostly LOL.

The fireworks started Olivia was very excited.  She sat down in her mini lawnchair and yelled out "wheeew" and "oh yeah" and then she stood up and clapped her hands as if the whole event was over and picked up her chair and announced she was ready to go!  :)  A few times I noticed both the littles covering their ears, which is odd since we were a few miles from the show!

Well, after washing hair and bug spray off, the incisions look fabulous.  Both girls are getting faster I have noticed attempts to run again.  Makes me nervous though!~

This post is a short little update.  Our fireworks were a week early for some reason - but we may venture out again on the 4th.  I'll keep posting on the progress, but so far so good!

Discharged from the hospital in three days and finally home!

So the morning of day three I thought we would for sure be there another night in the hospital.  Olivia woke up again scared to get out of bed then her right leg was hurting.  PT came back and had her walking well within 20 mins.  We decided to go get lunch in the cafeteria after we played in the playroom for a bit.  By the time we got back upstairs to our rooms we were talking to the nurse about possibly discharging and staying at RMH for one night.  Dr. George agreed and we did.

John one of our nurses was surprised they were leaving so soon and sat down in disbelief!

Olivia hated the smell of the alcohol wipes when getting out her IV!

When we left the hospital the girls were very sensative still (of course) in their neck muscles when the car would hit a bump.  I thought "oh boy this is gonna be a fun ride home".  However, the next day when we started traveling home both girls did fine.  No complaints!  So, that extra night was huge.

We got home very late but our other kids were so happy to see us.  It felt so good to be back in my own bed without all the interuptions hospital life has to offer.

So, now, it has me thinking that God does not plan for our testimony to stop here.  I have a goal of posting on Chiari and encouraging other moms through the journey when they contact me.  I can't say this was the easiest thing to do ever.  Even though, reading through it, doesn't seem too bad.  Emotionally, it is such a difficult thing.  Your sweet baby(s) going through any surgery would be emotional for any parent.  However, I had to fully and totally put my trust in God.  I put both children in his hands and they came through with no issues.

Today marks one week since surgery.  Both girls are moving well.  No running, walking better.  Still not looking up or down with their necks.  The incisions are sometimes itchy but look fantastic.  They are playing well and not overly tired.  I think I have given them a handful of doses of tylenol but not much.  Neither girl has complained of a headache even one time!  Olivia continues to be excited about feeling things with her hands.  Apparently, she had lost feeling in the tongue, the fingers and outside of her skin.  Her face she is actually bothered by her hair touching it now!  So, I think she had lost more feeling than she knew.

A Neurosurgeon we saw once told me a patient told him that syringomyelia was like cooking a frog.  You put a frog in cold water and heat the water up to cook them.  It is a gradual change and that is why they don't jump out of the pot.  They don't notice.  This holds true for syrinxs.  I can say that over time, Olivia lost feeling so gradually, she didn't complain or tend to notice.  So, I praise God that he revealed this to us and how he is getting her back to normal so well.  Also, the surgery seems to have calmed Olivia down some.  Before she could almost never sit still.  Now, she seems less agitated.  I think the constant tingling was causing her to constantly move.  She could not even sit still to eat!  Also, her appetite has gone up.  I'm sure having feeling in her tongue again has helped!

Anyways, that is my little update for now.  Our next big appointment is in September with Dr. George to evaluate how they are doing and then I'm sure he will be scheduling Olivia's next spinal MRI to look at the syrinxs.  I think...no I know that they are improving already.  God's healed her and I also have that "gut" mama instinct.

I sure hope that if your reading this blog and you are getting ready to go through this or are making decisions on the surgery, that you will be encouraged.

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!