Saturday, April 28, 2012

Day 3 Post Op

Sorry I was not able to update yesterday.  We were in ICU most of the day and then finally got moved to the floor around 4:30.  The good news is that the less time I have to update this, the better Kendall is doing.  She's ready to be entertained!!
Her pain medication is completely off.  We are just doing an as needed schedule right now.  She hasn't had any fentanyl since yesterday around 4.  She also has her brace.  To say she hates it would be an understatement.  She will raise her arms for me to hold her and when I get her brace to put on, she quickly changes her mind and decides she doesn't want to get up anymore.  It makes it so hard because I want to hold her so bad but I hate putting her through the pain of putting the stupid brace on.  It still needs some adjustments done but the Brace Shop is closed over the weekend.  They may be coming in sometime but most likely it will be Monday.
Here is a video I shot of her post IV valium that we gave her for muscle spasms.  My girl loves her valium.
video

Last night Kendall slept much better.  Our interruptions were mostly kept to a minimum.  Last night my friend Jill, who lives down here, was able to come and help entertain Kendall while I got the room set up and ate dinner (finally at 9:30)!!  It was a very busy night.  Of course she was up bright and early at 6 this morning.

Braden and Matt are coming down today.  Braden is staying the night at his friend Jesse's house tonight and he is VERY excited about that.  I'm hoping that they will kick up out on Monday.  I can't see why we would need to stay any longer.

If you all could please pray that Kendall becomes more comfortable with the brace, that would be very much appreciated.  Also pray that I become better at getting it on in a timely manner.  It is big, bulky, and uncomfortable.  I think it will definitely cramp our style for the next 6 weeks.  If anyone can learn to manage it, Kendall can.


We also are working hard with Kendall's palliative care doctor to figure out a solution for her frequent screaming at night.  We have taken away a med and added another.  Last night she seemed to be more restful than before.  We won't see the full effects until we get out of this environment, but I'm cautiously optimistic.

Thanks for checking up on us!!
Love,
Steph and Kendall

Thursday, April 26, 2012

Post surgery day 1

Overall today Kendall has been a superstar.  We have been pushing her pain button less and less as the day goes on.  Last night was a little rough just because the nurse had to come in quite a bit to give medications and make noise.  Matt had a little heart to heart with her at some point in the night about the frequently loud interruptions and we have since learned we will have a different nurse tonight.  

Today Kendall has been awake for most of the time.  She still is required to lay flat but we can flip her from side to side.  She has been spending quite a bit of time watching her cartoons on net flicks on the iPad.  Thank goodness for technology.  Toys just don't seem to cut it for her like a good episode of Yo Gabba Gabba or Dora.  


Here is a little video I shot of her today while she was being a little more vocal.  She started out the day very quiet and has since started voicing her opinions a little more
video

Today we also had the brace shop come and fit her for a custom brace.  This involved making a cast of her trunk.  We started with her on her back and then had to flip her to her stomach and mold the back portions.  Needless to say, she didn't' like it very much at all.  She tolerated it with just a quiet whine through it all to remind us that she was not happy about it.  I'm sure tomorrow she will be just as excited for them to put it on and make some last minute adjustments with the saw used for casts.  




Currently we are almost at her regular continuous rate on her tube feedings.  In the past, she has struggled with tolerating her feeds after surgeries.  She usually vomits quite a bit.  I'm not going to jinx myself and declare a victory yet, but so far....so good.  I may just keep her continuous and worry about boluses when we get home.  She always does better at home.  

The plan for now is to keep her on her precedex to give her a little bit of sedation.  Surprisingly with this today, she still had a relatively "normal" schedule.  She took her long afternoon nap and was awake much of the rest of the day.  We will also keep her on the fentanyl.  There was talk of turning off the continuous drip and just letting us push the button when needed.  I always hate to make that change at nighttime though because my fingers don't push buttons during my sleep.  So far, the drip is still on.

Tomorrow at some point, we will go up to the regular floor.  As soon as we are off of the precedex and the fentanyl drip, she can come off of all the monitors.  At least that is my rule, hopefully they agree:)  Her arterial line was also removed today.  She has enjoyed having an arm available to reach for things and play with toys.  For most of the day she was stuck with an IV in her left arm and the A line in her right arm.  When we removed the pressure bandage after it was done bleeding, she then gave us her right arm to have us remove the IV.  We had to gently break the news to her that she wasn't getting that arm free anytime soon.  

So to sum up our day, overall...awesome.  

Thanks for all of the well wishes and prayers!  
Love, Steph

Wednesday, April 25, 2012


Kendall made it out of surgery around 4.  The surgeon was able to remove all of what was in her spinal column and chase it out a little ways as well.  He commented that the tumor was bigger than what it appeared to be on the scans.  

Everything went picture perfect.  Right now we are in PICU.  She will be here for at least 2 days.  He wants her to lay completely flat for those two days to prevent her spinal fluid from putting pressure on the part where he had to go in.  After PICU, we will move to the neurosurgery floor.  

Right now we are just trying to control her pain.  She has a PCA with a button that we can push every 10 minutes as well as a continuous drip of pain medication.  They are also giving her precedex to keep her slightly sedated so she doesn't want to get up.  

I ended up picking the lucky straw and getting a key to one of the sleep rooms.  Matt will stay in the room with Kendall tonight.  
Thanks everyone for all of the prayers and well wishes.  We truly appreciate them!

Love, 
Steph

Surgery Day

I handed Kendall off to the nurse at 9:30 this morning.  Usually we sit in an induction room and I get to hold her until she falls asleep with the mask.  This time they didn't have an induction room for us and I had to hand her off right outside the OR doors.  Before this happened, the anesthesia team did order some versed for her.  I have to say that she was pretty entertaining after we gave her this.  We got to enjoy Kendall's humor for about 30 minutes before going back.  The surgeon thinks the surgery will last 6-8 hours.  Afterwards, we will go to the ICU for at least 24 hours.  He wants her to lay flat for that time which will require some medications that make her sedated.  She should be extubated though when she comes out of the OR.  



Here is a video of her while she is enjoying her versed.  It just got even better after this.




video


I'll update more when we get more news from the doctor.  Please pray that everything goes as well as last time.  Pray he is able to close the spinal column without any leaking or difficulty.  

Love,
Steph

Sunday, April 22, 2012

How to Pack for the Hospital


After many emergent and planned trips staying inpatient with Kendall, I have learned some invaluable tips that come in handy when packing a suitcase for a lengthy or short hospital stay.  The contents of my suitcase today have changed greatly from the contents of that very first hospital stay when Kendall had the first biopsy.

Let me go back by telling you what I used to pack.  In my warped mind, I thought I had to look put together if I wanted to doctors and nurses to take me seriously.  I have since learned that there is a different way to look put together.  I would pack nice jeans, nice shirts, nice shoes, and separate pajamas.  I would pack a different outfit for every day.  Basically, I would pack like we were going on a vacation.  In my defense, I had never stayed overnight in the hospital, other than to have my children.  After about the 3rd hospital stay, I met a very important person that would highly influence my packing habits.  In a way, she was my hospital style mentor.
So here goes...THIS is the best way to pack for the hospital


1.  Sweat pants are a must.  I'm not talking about the sweatpants that are tapered and elastic at the ankle.  I'm talking about stylish yoga pants.  Just because you are wearing cotton pants, doesn't mean you have to lose your sense of fashion:)  There are a few reasons these pants are a necessity.  First one being that you can pack about 5 of them and when they are dirty, throw them in the washing machines on the floor.(This reminds me, also back scented laundry detergent.  This helps you feel clean, even if you aren't.)  Second, they double as pajamas.  No more packing separate clothes to sleep in.  Emergencies can happen day or night, so you always want be prepared to leave your room and still look slightly put together.  In fact, the entire oufit you wear should be suitable for sleep as well.  The third and most important reason for them, when you sit in the hospital for many days, you tend to start noticing your abdominal region sticking out a little more than usual.  The elastic waistband on sweat pants comes in handy for this.  It leads to less focus on how much weight you are gaining as you sit.


2.  Tshirts with fleece pullovers.  It gets cold in the hospital.  These are a must for winter or summer.  Most likely, you will not go outside for many days so there is no reason to pack based on the weather (remember we are not going on vacation here).  These are also good at hiding the gut that is building from sitting all day.  The benefit of the tshirt is when you go to bed, you just pull off the fleece.  These are also great because you can just throw them in the laundry with everything else.  It is important to buy ones that are a little big because the dryers will shrink them.


3.  Comfy shoes.  I don't recommend wearing tennis shoes.  I find it is easiest to find a slip on shoe the can be taken off easily.  It has to still be a little stylish because you want it to look nice with your sweatpants.  It is also handy because you can keep them next to the bed at night.  If your child needs you quickly, you can just slip them on and run to the bed.  For GOD's SAKE, don't go bare foot.  As a nurse I know where nurses shoes go and what they walk through.  You can scrub the floor all you want with the PDI wipes in the room, but you can't keep those nasty nurse shoes from touching your floor.  You don't want your feet touching any of that. 


4.  Makeup.  Although you don't want to appear to be ready to go out clubbing, it is still nice to look a little put together.  Chances are, things will get stressful.  There will likely be a time where you go a little crazy on one of the nurses or a resident.  If you are wearing a little bit of makeup with your nice sweatpants and fleece pullover, the person who is at the receiving end of your tyrant will most likely just leave the room feeling sorry for you and not calling social services that a mom has lost it.  Makeup can also give the appearance that you have it all together when you spend your entire shower time bawling our eyes out.


5.  Laptop.  This is your only access to the outside world.  It is a must.  It also can come in handy when you need to quickly look something up so that when the doctors come in, you can pretend to know what they are talking about.  Don't make the mistake of sounding too know it all ish..they will see right through that and you will immediately lose respect. 


6. Snacks.  Not the healthy ones either.  You brought the sweatpants so you might as well take advantage of the elastic.  There are many times that things get so busy with doctors and nurses coming in and out that times gets away and you forget to eat a meal.  In cases like these, junk food comes in handy.  Also bring things to eat for breakfast.  You don't want to waste money on buying it everyday.  


7.  Your own pillow and soft blanket.  Even though I am psycho crazy about bedbugs, I have to have these two things.  Sleeping on the hospital pullout is bad enough.  You might as well have a little comfort.  


8.  Your sense of humor.  Things can get mega depressing as you are sitting there staring at your sick kid.  Especially when you read Facebook and hear how perfect everyone else's lives are.  If you fail to pack your sense of humor, you are at risk for looking like a fool.  If you get too caught up in what your situation is, you will fail to notice that you have children on both sides of you that are most likely sicker than yours.  The nurses don't want to come in the room if you are mopey and have the "woe is me" attitude.  They very likely could have just came out of the room of the kid that may not make it through the night.  Keep it light, find  humor in sick things, crack jokes with the doctors, and smile a lot in front of your child.   After all, it's all about them, not you!

3 more days until surgery.

Love,
Steph

Monday, April 16, 2012

Counting Down

We have 9 days until the big day.  Today we went to Kendall's pediatrician to have her ears rechecked and get her pre surgical physical.  Everything checked out fine.  She still isn't sleeping well.  Some nights she is up 10 times, other nights only 4 times.  I'm starting to doubt we will ever figure out how to consistently get her to sleep through the night.  

Kendall and Braden both had an ok Easter.  For the first time since I can remember, we didn't go to church on Easter.  Kendall was up 2,000 times the night before and quite frankly, it was hard to get the motivation to even take a shower the next day.  Braden had a pretty candy free Easter.  The stupid dog decided to jump up on the table and eat every last piece of candy out of both of the baskets.  Now instead of obese, I'm sure she has bumped up to morbidly obese.
  
So, for those that don't know, Kendall's surgery is April 25th.  We will have to be at Cincinnati Children's at 5:30 am.  She is having the same type of surgery she had back in November.  They will go into her lumbar spine and remove the part of her large plexiform that has invaded her spinal column.  Picture removing a leaf off of a tree, this is the best way I can think to describe it.  The tumor is huge and we are only able to remove a very small portion of it.  After her surgery, she will be in the PICU for at least 24 hours.  Last time we were moved out faster than we expected.  As sick as it sounds, I have comfort with her being in the PICU because she has constant care and she is usually sedated enough that I know she is comfortable.  I get my best night's sleep in the hospital when we are in the PICU.  After the PICU we will go to the same floor as we were on last November.  She will probably be there 5-7 days in a perfect world. After the surgery, she will have to wear a brace that keeps her back stabilized.  It will have a hard front and hard back and will be the biggest PAIN!  She has to keep it on at least 6 weeks.  There really should be no difference in her strength once she heals from surgery.  The tumor is pressing on her nerves in her spinal column but it doesn't appear that it is what is causing her left leg to have pain and not work right.

This surgery will be so different from the others.  She is so much more aware of things.  I've actually wondered how to tell her what is going to be happening to her.  If we go to the store, I tell her.  When we go to the doctor, I tell her.   I'm sure I'll figure it out.  I also don't usually take advantage of child life while we are in the hospital.  This time, I'm going to have them come in more with activities.  It's going to be hard to keep her entertained all day long by myself.  

Kendall LOVES to color.  She colors her paper, desk, chair, and body.  Here are a few pictures of what I came back to after leaving her alone for a few minutes.





She also is starting to take interest in the Wii whenever Braden is playing his game.  The rule is, when Braden is playing, Kendall can play too.  The only catch is that we take out the batteries in the remote so that she doesn't turn off the game while Braden is playing.  We learned our lesson the hard way on that.  Her favorite game is Lego Indiana Jones.  Probably too violent for her age, but she's got to get her frustration out somewhere.  



If anyone is interested in getting Kendall something before surgery or after surgery, please consider making a donation to CTF in her name instead.  I promise she will thank you one day.  To get to her page, just click here.  We have a long way to go with our fundraising this year.  I haven't been very motivated to do it lately.  If you live around the Indy area and you are interested in signing up for the walk or the run, please click here.  We are lacking in team members for Kendall's Army.
One more link...if you are interested in seeing the pictures we had taken a few weeks ago, click here.

That is it for now!!  Thanks for the prayers. 

Steph


Friday, April 6, 2012

We are focusing on staying healthy right now as we count down to surgery day on April 25th.  Just one year ago today, we were on our way to the Outer Banks, NC for our family trip before her big surgery on May 12.  We weren't even sure what life today would be like with her.  Today she is not only here, but she is doing great.  This week at her appointment with her developmental therapist, she said 38 words.  Whatever she is lacking in motor skills, she is making up for with cognitive skills.  She's my smarty pants.  I have to say that she has developed quite the little attitude as well.  It is spunky enough to drive me to the edge one second and then have me laughing the next.  It's Kendall's world, we just live here.



I am on heightened alert right now because I'm afraid she is developing something again.  She's been up a lot the past few nights and I'm noticing a few things.  I'm worried she is getting another kidney infection.  I'm hoping it is not and am going to hold of doing anything about it until after the weekend.  I hate to cath her until I'm certain it is needed.

Braden has been on spring break this week.  We have been enjoying having him home with us, although my ear are always tired by noon.  I think he must like to see how many words he can fill each minute with. I took the kids to the Children's Museum yesterday, which is always a nightmare for me.  It's like a breeding ground for weird illnesses.  We went on probably the busiest day in history.  I managed to bribe Braden with a toy from the gift shop and got out of there in under 2 hours.  

A few more good ones of the kids.

She may look like she is eating quite a bit here but pictures can be deceiving.  A few bites in all we get.