Tuesday, April 14, 2015

One Month Out!

One-Month Post-Op!!! (Well, she was on the 11th!) I can’t believe we are a month out… time as flown by!
Things are going well, and continue to get better. Kaylie doesn’t need my help getting dressed, or after she uses the bathroom, but I still have to help her shower… she says she doesn’t feel steady bending/looking down to wash her body… and washing her own hair isn’t an option either. She still continues to wear the neck brace, but mostly in the car, out in public (sometimes she will take it off… in none crowded places), and when her neck gets tired. Example is her tutor was at our house and they were working on her school work, in about 45 minutes in she wanted to put her brace on… she doesn’t complain of pain, she says “it’s tired”.
The homebound situation is going well, and her school is completely supportive and understanding about everything. It’s really great to have a school this way for parents in these situations, as it takes a lot of stress off of it all.
PT is going great too. She still is going just once a week, and loves going! She says she feels “looser” when she goes. Kaylie is still a little stiff in the neck, and you can really see that in pictures like our Easter pics, or when she has the brace off. Her mobility is getting good… typically with cervical fusions of her nature (O-C2) you will loose 30% mobility, but since Kaylie has EDS (Ehler-Danlos Syndrome) the percentage is less, b/c that “extra” flexibility actually helps out in this area, even those EDS is the cause of her Retroflexed Odontoid Process (the need for the cervical fusion). Below is a video of her looking left and right and up and down. Looking up is a little hard too, her PT explained to me: since the rods are fused to her skull, it’s in a “fixed” area… so it will be limited.
video




She does look stiff in these photos, but part of me wonders  if what was
coming the next few days didn't play a role into it all. This is Easter morning, later
that late afternoon, she started not feeling well, and her head was hurting.
Then the next few days we had weather issues… so I think it was all weather related. 



I’m still currently looking for a Rheumatologist for her in the Texas area. I’m emailing a few, and talking to other patients for suggestions before making an appointment with any of them.
I’m also trying to find a better symptom tracker application/system. I think she has a lot of things that go on, that I need to keep better track of, that are not related to Chiari.

Her incision is looking great! I actually think the healing process this time around has been a lot quicker. Possibly due to she had steri strips last time. She does have a tiny bit of keloiding of her scar going on… but I honestly think it doesn’t look bad at all.

Things are going good!!


Friday, April 3, 2015

3 Weeks

Kaylie was 3 weeks post-op on Wednesday. Things are really good, slow… but good. I can't complain how well her incision is healing… it looks great!

Her 3 week pic looks a little irritated, but that's from the brace. She just got out of the bath that night, and had been wearing her brace all day. I should take the photos in the morning… b/c it looks better… kind of like her 2 week photo. I'm still having to help her bathe, get dress… her neck muscles are still very stiff, and they will be for awhile. She started physical therapy last week…. she loves it, she says she feels "loser" after she is done. We have a couple home exercises that we do between PT visits. I will write about those in another post soon. She also started her home bound program from school. Her teacher is Abby's Pre-K teacher from a few years ago. So, its nice to know the person that is at our house.
Pain wise… is good! She actually doesn't take a lot of meds, usually by the end of the day, she says her neck is tired… so i give her something… she still wears the brace a lot…
My only complaint is how tired she is. Fatigue has always been an issue with Kay…. and I think I use to blame it more on the headaches… but it does make me wonder. She sleeps 12 hours a night, in the morning it is so hard to get her out of bed… its a really big struggle. She tells me a lot she is tired too. I know she is only 3 weeks post op…. but I really don't think she should be this tired all the time…. and this happened a lot prior to surgery too. Something to watch.

Its been hard to get back into a routine for our house. But I think we are slowly getting there. All of everything that has gone on, as taken a toll on me too. I'm starting to feel very withdrawn from Facebook, chiari awareness… being involved with things socially for a good cause. I don't know if its I'm just emotionally & physically tired, or if I am wanting not to be so involved in things. I need time for me, my family… I think I'm still worrying about Kay a lot too.
Ive been gardening a lot lately… and it is SO nice. I feel like I'm away from the outside world.

On another note… Anytime I am out with Kay, she probably gets asked at least 3 to 4 times a day, "Oh, Honey…. What Happened?" It's kind of got annoying… to the point we are starting to come up with funny little off the wall stories. Then of course we tell people the truth. But its funny to watch people's expressions!
The first one Kay said… was we walked into the pharmacy and the clerk was all, "Did your brother beat you up?" (Mason was with us)… Kaylie turned around, and looked at me, then at the clerk and said, "Nope.. I fell off a unicorn." So nonchalant and everyone at the pharmacy started laughing. So,  later I will have to tell you our 25 top stories we tell people! LOL
Easter is this weekend… we are excited to spend it with our family, my parents, my grandparents, Aunt, my brother & his wife. We haven't really seen anyone since we have gotten back. It will be a good Sunday. We hope everyone has a wonderful & blessed Easter! xoxo

Sunday, March 22, 2015

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.
video

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.




Sunday, March 15, 2015

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: 

Friday, March 13, 2015

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… 

Wednesday, March 11, 2015

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.

Tuesday, March 10, 2015

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!!!!