All In A Week….

It amazes me how fast time flies. First, We are back home in Oklahoma now…. and Kaylie is doing good!!

Last Monday, she was discharged from the hospital. Dr Rekate came in that morning and was so happy with how Sunday was for her. We headed back to RMH, to rest & relax.

Good Bye Hospital!!!

Her friend Nic, was discharged the same day!
He also has Chiari & some related conditions. 

We played LOTS of games…. PS ~ I despise Uno now! 

….and drank hot chocolate… and more games!

Therapy Dog Nights!!

On that following Thursday we went for our follow up appointment with both doctors. They were happy with her progress, talked about physical therapy, and cleared her to travel home!

Waiting to see the doctor! Why Yes! That is an ASAP brochure
in the back ground!!! lol www.ASAP.org

Friday came, and so did a snow storm! We woke up early that morning, packed things up, checked out…. which by the way…. THANK YOU to the anonymous person who paid for our stay at RMH…. it was much appreciated! We left RMH, headed to Ben's dad's house in Philly. We stayed the night, then got up really early Saturday morning to fly home!!

Next Stop…. Oklahoma!!!

The first flight was really rough…. she got very sick on the plane, we think it was due to the pressure changes, when we got to our next flight she fell asleep before we took off, and didn't wake up till it was time to walk off the plane. Saturday when we got home… we were so happy to see Abby & Mason, and the rest of our family…. so good to be home! Kaylie laid in bed most the day… she was very tired from all the traveling.

2nd flight… trying to recover from the first. 

Kaylie wanted me to share this video with everyone…. she did it while at the Ronald McDonald House.

Today was a good day…. hung around the house… this coming week should be relaxing. We see her pediatrician on Tuesday, and hoping to get her PT set up for the last week in March. She is doing well pain wise…. doesn't really need a lot of pain meds… she is actually doing really well. When she does "too" much is when things start to bother her. I keep telling her to slow down, take it easy… but you know how 8 years old are! ;)

And like last time, I will post her incision pics. I was really glad I did this last time, and that I had posted her recovery last time… I was able to compare things, and how she is doing.

The photos are marked, first one included her drain that was in place.
This time we can see the redness, and the scabs… b/c last time she had steri strips.
She did not have steri strips this time due to the drain, and the wanted it to air out
and be able to see it as it started healing. Her incision pics from last surgery
are under "About Kaylie" tab.

A Small Difference Goes A Long Way….

WOW! Yikes! I always reread my last post to see where I leave off at…. I was in a dark place when I wrote that last one.

So much has gone on since… and of course in my fashionable writing skills Im going to copy/paste from FB!! lol


March 14th - Morning/Afternoon Update (Post-Op Day 3) - Last night was a good night, pain was controlled even better (after having a talk with her and a little toy bribing)… she wasn't telling the nurses her pain level, b/c she was not liking them flushing the IV before starting the pain med. (There are no needles involved, just her being scared). They added an oral Tylenol to her list of meds, but she vomited it immediately, that happened around 5:30am… then around 9:30am they gave her oxy (orally) (we are trying to get on oral meds)… she did well, kept it down… but at 10:15 was give colace.. only got half of it in till she threw it up, that was a big mess. Her taste is VERY sensitive right now. But at least she is getting her pain meds, and keeping them down. After all that we bathed her, and got her into her own jammies. Neuro came by, talked about getting her moving more, we said our goal today is to sit in a chair. They put a collar on her (for her age)… but it was way too big, so they had to get a smaller one… she says it feels good when it is on. I think she is feeling very "head heavy" b/c her neck is now in a correct position, and her muscles in her neck are very weak. She did eat 2 ounces of applesauce this morning, and we showed her pictures of the Child Life playroom… hoping to entice her a little to start moving around. She has lost a lot of weight, not sure how much… but the pjs we put on her, fitted her back home… and today I could probably take in a couple inches to make them fit right. I went back to the house to shower, and clean up her favorite pillow and "cowy", she is napping right now, but when she wakes up, hopefully we will get her in a chair.

March 15th - Morning Update (Post-Op Day 4) - there was no afternoon update yesterday due to some craziness. Not kaylie, but with mommy. Kaylie afternoon was uneventful, she ate more, had a jello cup and 2 mini muffin bites. Ben said she slept threw the night, no problems.
After lunch yesterday I went back to RMH to shower and grab a few things. When I came back to the hospital I got severely sick. I went back to RMH to rest, and then just stayed the night there. I think it was a mix of something I ate for lunch and much needed rest. I feel great this morning, was back over here at the hospital early. Kaylie was up when I arrived, getting meds on board... This morning she will get in a chair! Here is to having a good day!!!

Then…. my most favorite update post from Facebook:
March 15th - WHAT A DIFFERENCE A DAY MAKES!!!! 
Afternoon Update (Post-Op Day 4) - I LOVE "turn around" days!! Today has been great…. after getting pain meds on this morning, she sat up in bed to get the collar on, walked to her bathroom (in our room) (has been using the bathroom in there now since), we walked two doors down to a chiari family (Not sure what I would do without you Laurie!!), walked to the playroom, Laurie helped clean up her hair a little, and put it in pig tails (there was a lot shaved off, and shaved hair mixed in with prep = massive mat mess)… AND she has eaten 2 whole large croissants, along with lots of water, and a Capri Sun!!!! We are doing good! We will be discharged tomorrow!!!! I am so unbelievable happy, proud of her and my husband Ben!!!! He was an awesome daddy nurse last night when I couldn't be there, and he must have the "turn around magic"!!! Hope everyone is having a great day…. B/c We Are!!!

Im SO grateful to so many things… my husband: for always being there, and picking up the pieces when needed. My family (especially my parents): yes, I love them for being there to take care of my other two little ones… but their support ceases to amaze me… when I got sick, I had to walk back to RMH (Ben was where he needed to be, with Kaylie…I would have had it no other way)… but my mom… was there. On the phone with me, make sure I got all the way in the RMH door, OK. I love their support, their love, their endless nurturing. I truly hope I am that type of parent with my kids. 
Our Team of Doctors: My kids seriously have the "PERFECT" team of doctors… I love each and every one of them… they are supportive, caring, compassionate, praying, smart, amazing, … the list could go on and on… we are lucky to have found all of them. 
Our Friends/Supporters - Wow, just wow… thank you for everything, and every prayers… you help us get through these difficult times… Its Love! 

And I wanted to leave this post for now with this… one of my favorite quotes, in times like these: 

Everything is OK...

Im so sorry I haven't updated this…. things kind of move quickly after surgery…. and i feel like Im forgetting to do something all the time. We are going to play "catch up" so, here is what has been posted on Facebook….. in order from surgery…

March 11th, - We are with Kaylie. She is a little swollen, but not too bad. She is doing ok, we are already in our PICU room. She has a drain from her neck, that will be there for a couple days. She has talked... In fact the kaylie that always wakes up from anesthesia... Is always a little bossy/demanding. Yes, I know... Not the Kaylie any of us know!! But I like that... B/c she will make sure to tell these nurses how she is feeling. She has asked for her own pillow, Ben went and got it. Prayers continued please, as the first couple night are rough.

March 12th - Morning Update (post-op day 1) - Kaylie had a good night last night! She did vomit 4 times, but that all ended around 11:30pm. She slept on and off through the night. She did try (she wanted to) sit up a couple times, just for a couple seconds. She still has the drain in, and they say they will keep it in for another day or two. They are keeping her pain under controlled very well. She is also using ice packs on her neck too.
We have a long recovery to go. Dr. Insigna talked to us some after surgery getting Kaylie in to see a Rheumatologist in a few months, after she is recovered some. He is concerned about possible collagen disorders, or autoimmune disorders with her. One step at a time….

March 12th - Evening Update (Post-Op Day 1) - Today was a little bit of a rough day. I think anesthesia has worn off, which makes the pain part come out worse. Her meds got under control better this afternoon, but she is having a lot of light & noise sensitivity… which is not abnormal for Kay… just kind of sucks with all the bells, and dings around. Luckily we brought her ear muffs, that she uses in school with us… so she has been wearing them most of the day. She has also been sleeping a lot. The did remove her foli cath today, and she used the bathroom several times, so that good. Thank you for the continued prayers.

March 13th - Morning Update (Post-Op Day 2) - The night was uneventful. Her pain is there, but being controlled. Her neck drain was removed. They have cut off the IV fluids for now, and are going to be running some blood test and urine tests. She is urinating a lot (frequency wise & amount wise)… and then having urgencies where nothing is coming out. They are a little concerned with the amount of urine being produced. She likes "cowy" her cow, on her face… wink emoticon
Dr. Rekate came in this morning… Dr. Insigna just came in… LOVE HIM!!!
Things are going good…. its just a slow process.

March 13th - Evening Update (Post-Op Day 2) - I first have to start off by saying "Sorry" if you texted me, called me, messaged me, tagged me… or anything else…. I was completely focused on Kay today, I didn't even get to talk to my parents for a good length of time till tonight. 

Today was a little rough…. blood work came back good, urine still being looked at… but we all think it was really just from having "Too" much fluids. They pushed a lot of fluids during surgery… then having a load afterwards… since being off fluids, things have calmed down somewhat. They are still waiting for a couple other test that will come back in the morning.
She got moved out of PICU, to a regular room, it took a little bit to get settled, but by late this evening… we worked on her Beads of Courage (she had received beads right before we flew here).. so we added them on… that took a lot out of her, then we facetimed my parents, Abby & Mason. She was very happy to see them, but that as well, took a lot out of her, and the noise was a little much. But she LOVED seeing them. OH!!! The biggest news! Late tonight she finally ate!!! She had 3/4 cup of a pudding cup and had about 3 ounces of water!!! I know its not much…. But its a big strive in the right direction!! Really hoping tomorrow brings on more, and that she can start sitting up a little more.

not sure if I have the same followers on Kay's blog as I do on Facebook… . but I tend to voice myself on her blog more. I am so full of mixed emotions right now, about everything going on around me. While Kaylie was in PICU, I would walk to the bathroom or to get a cup of water, and would see infant babies in rooms without parents… ever, our whole time up there. It made me sad… for them. I can't imagine ever leaving my child alone. 

This time, Kay's surgery recovery was a lot different than last time. Last time she did vomit a lot… too much, and I am so grateful that we aren't dealing with all that. But her actual recovery from surgery is a lot slower this time. It makes me sad, angry at these conditions… tired of dealing with it ALL. And when I mean all… I mean everything… people, doctors, awareness… Im ready to just throw in the towel. Im tired of going through emotions of friends you thought would be supportive, not being. Im tired of supporting other patients… Im tired of feeling like something is always wrong, or waiting for the next bomb. Im just tired. I sometimes wonder if I should just step back, and us be one of those families where things are good, so they disappear, and just deal with our issues on our own. I'm a little tired of having Facebook, groups on Facebook.. all of it in general..

I think I am just in need of a break… 

She is in Surgery...

Well… we woke up this morning to a phone call, to come now. That was about 7/8ish… we got in, took awhile to get admitted. I took her back to the operating room around 11:45am (10:45am central time)… I got to stay with her till she was asleep. Around 1:30 (12:30 central time)… we got a call, that they were starting the actual surgery. It does take some time for them to place all the lines, monitoring systems, and positioning, before they start. Our Facebook timelines, and her FB Page have been unbelievable full of support, prayers, kind words and people showing off their purple! We appreciate every last one of them… Thank You. She probably won't be done till around wish eastern time.

Surgery is a GO!

The week as been busy! Monday was spent going from one appointment to the next! CT Scan done, Pre-Op done, then we met with Dr. Rekate! All went well… all is schedule, but with the "OK" from cardio.

At Pre-Op with Daddy doing bunny ears!

Our Rock Star Neurosurgeon!!!

Yes! Dessert before dinner…. 

Chillin at RMH in the Mets Room

Today, Tuesday… was Cardio day! We had a very good "sign" as we walked in the door…. one of our nurses during our appointment was Kaylie's ICU nurse from her last surgery…. she is now in cardio! It was great to see her!!! Carol is awesome!

So at the cardio appointment we learned there is something in her heart… but not sure if it was a clot or a growth. The cardiologist want a few hours to send her stuff to the other cards at the hospital to decide as a group on if surgery would be a go. They were looking to see if it was a clot, was it attached solidly to the heart, so that it would not move during surgery. They would typically give a blood thinner, to rule this out, but due to surgery, that can't be done. If it was a growth… it would be watched to make sure it didn't change sizes or blocked flow. They would decide as a group if surgery would happen, if further testing was needed, and if surgery was happening if they wanted to place a camera down while asleep, to look better at it.
After several hours… we got the call! Surgery is a GO! And as for the heart, it ended up being a fold in the tissue. There was no worries about surgery, or the fold. They also don't need to do the camera during surgery. We just need a recheck in a year. The cardiologist will be at the hospital tomorrow, and will check in on her after her surgery.

An emergency came in tonight, so we got a call that her surgery was pushed back. It is still on Wednesday… but now at 2:30pm Eastern time. The surgery should take about 4-6 hours give or take.
We are ready to get this over with, Kaylie is in good spirits as well. Many prayers asked for…. Wear Purple tomorrow!!!!

HELLO New York!

We made it to New York, checked in at RMH (Ronald McDonald House). The flights went well, no problems for Kaylie. We got to visit with Ben's side of the family… most live in PA, it was nice to see them. We have a busy day tomorrow, she has a CT scheduled, Pre-Op, and appointment with NS.

Kay "loved" this wallpaper in one of the comfy rooms at RMH….
we call it the "Bunny" room. 

We have received a few messages on Facebook asking for an address… It is:

Ronald McDonald House of Long Island
ATT: Kaylie Barnes; Room 303
267-07 76th Ave.
New Hyde Park, NY 11040

Most updates will be posted on her Facebook Page: Kaylie's Chiari, and yes, we still have the GoFundMe Account. Thank You for all your continued support, well wishes and prayers… we truly appreciate it.

Show Your Support…. you can post your pics on her Facebook Page! 

Feel Better Friends

Another Chiari mom from Canada told me about this organization called Feel Better Friends. She said I should contact them, and tell them about Kaylie. They make dolls for children with chronic illnesses. The dolls are made to look just like the child, even down to little details.
The lady that contacted me from the organization, is originally from Norman, OK, and all her family still lives here! Her sister, who also lives in Norman was assigned to make Kaylie's doll. They asked favorite colors, eye color, favorite things.. etc. I told them Kaylie loves to roller skate, and she won't get to for awhile after her surgery. That she has a pet bunny named Sara, and of course told them about Kaylie. It must have been fate…. because the lady who made Kaylie's doll her name was Sara too!!!

Kaylie and "mini Kaylie"… wearing purple tutus and chiari ribbon awareness shirts! 

Kaylie and bunny Sara…. with mini Kaylie and mini Sara! LOL
The doll has a scar like Kaylies on the back of her head (thin & faint),
The doll has a birthmark on the back of her leg, just like Kay's!

We can't Thank Sara & her sister Amy from Feel Better Friends enough! She loves her doll, and her mini Sara too!!! xoxo
Visit there site above, or you can check out their Facebook page too!

Down To The Wire...

The results of Kaylie’s blood culture was negative, No infection. The clearance letter we got from the PA was:

“We recommend the following surgery precautions: None, Cleared for surgery from a cardiac standpoint. On the most recent echo in clinic on 2/2015 did have hyperechoic area at her SVC to RA junction which could represent either an old cast from an old line or possible organized clot. Have done blood culture to rule out underlying infection and were negative as is clinical exam. Per discussion with my attending physician, Dr. -------- areas should not be an issue for upcoming spinal surgery. If was a clot has no residual shunt or pathways for it to travel to left side of heart. If you have any questions or would like to discuss further please feel free to contact our office.”

Our NS wasn’t comfortable with this letter, and they & the hospital that Kaylie would not be cleared for surgery until seeing a cardiologist in NY decided it. I think this is for the best, for the simple reason a second opinion is always best. We know it’s not an “old cast” because Kaylie did not have a PICC/Central line in her last surgery. We have an appointment with the Chief of Pediatric Cardiology the day before surgery. He will be the one to look more into this, and give the clearance for surgery.

Just a small bump in the road, right?

In other news, we had our “Paint it Pretty for Kaylie” fundraiser. We want to “Thank” all that came out that night, we appreciate the support and had a lot of fun.

The girls being silly before the painting class. LOL

Chiari Sisters

 Our Flamingos are finished, and what an amazing fundraiser… Thank You to all our family, friends, and friends of friends that helped with this fundraiser…. And all the awareness it gave to Chiari Malformation & Related Conditions. You have to admit, its not everyday you see a purple flamingo!

“Thank You” for your continued support & prayers for Kaylie…. Its time to start counting down the days.