Tuesday Hospital Update

Julia had a rough night.  They were giving her hourly doses of morphine in the early evening to get the pain under control.  By 8pm she was out cold and sleeping peacefully.

She slept until around midnight when the craziness began.

Julia's bladder is not happy these days.  It has been really angry for about a year now.  She has been dealing with monthly UTIs, bleeding, and partial blockages. After many ER trips, pain, and suffering- Dr. Hodges put her on prophylactic bactrim to buy us some time until her bowel issues are fixed.  When one body system stops working, the surrounding ones go a little haywire, too.  Julia's colon is so large it compresses her bladder.  This has caused her bladder to thicken, spasm, and function poorly- neither of which are good when you drink lots of water and you only have one kidney.  She will need a year or more of physical therapy, biofeedback, and, bladder retraining- but none of that can start until her colon is functioning which will likely take a year or more also.

All of this caused by cancer surgery, chemo, and radiation treatments.  Unfortunately this is the price 65% of children diagnosed with cancer pay for their cures. Lives of side effects both immediate and down the road.  Sigh... We need better treatments and we need pediatric cancer funding! In the past 40 yrs, we have only developed one new drug for pediatric cancer treatment, one!! ( You can read more about the plight of pediatric cancer HERE ) Want to help? Get involved in a CureSearch Walk or St.Baldrick's shaving event in your area. Research and development take funding and our kids can't do this alone.

I realized yesterday Julia was not peeing at all.  They made the decision to catheterize her around dinner time.  They got about 300cc's and she was able to sleep.  They checked again around midnight.  There is a handy little ultrasound machine that measures bladder volume.  This machine follows us around every time she's in the hospital.

By midnight she had 600cc's.  After much screaming she was finally emptied again.  She was then awake until 6am this morning.  Thank goodness for round the clock Noggin :) This morning when the scanned her bladder volume it was up to 740cc's- that's over 3 cups! Bad news.  She had peed a few drops, so they gave her two hours to try and go on her own.
Dr. Pranikoff did morning rounds and said if she didn't start peeing by 8am, she was getting a foley catheter.  We also need to back off the morphine because that can cause bladder retention, too.  She can't take oral pain meds yet because she's not eating, but they decided to switch to toradol which is much longer lasting and will make her less sleepy. We are hopeful.

She finally started peeing around 8:30am! YAY! She was able to take a nap from 8-10am. The toradol was started at 10am and she is actually sitting in a semi-reclined position right now. This is big progress. We haven't had as many tears either.

So today we will try to get her moving around some and try to eat something.  The surgical nurse practitioner is coming to train me to care for her Mic-Key button and start flushes.  I met with the care coordinator to start the process of setting up home health care for all her cecostomy supplies. She's having fun playing and doing art with Stacy from ChildLife.  Some of their little friends stopped by to paint and play Littlest Pet Shop.  Now Ms. Betsey is coming by to do an art project with her.  

Prayer Request

Julia is still struggling with pain.  The morphine every hour is bringing some relief, but it doesn't last.  I realized a couple hours ago that she has not peed all day which means her bladder has been filling since she was cathed in the OR very early this morning.  She is on her second bag of IV fluids and has drank two water bottles this afternoon, so it must be going somewhere.  Unfortunately we have had this problem before post-surgical or anytime we do something involving her abdomen. Julia's bladder has the ability to balloon like no other.

After a quick ultrasound for volume the decision was made to catheterize her.  They drew off over 350cc's.  Hopefully this will help with some of the discomfort.  Please pray that her bladder function returns.  We know there are issues with her bladder (overeactive, incontinence, diffuse thickening, inefficient emptying, etc.) All of her bladder issues were caused from the pressure from her enlarged and malfunctioning colon.  This is why Dr. Hodges (urologist) wanted this surgery done in the fall. 

Please pray that her bladder begins to empty on its own and we can avoid any more painful caths.  Also that her bladder health begins to return.  We know she has a long road of therapies and treatments ahead of her on the urology front, but we cannot begin those until we get all the colon issues working again, hopefully after a year or so.  The chain reactions all these issues cause and the long therapy times can be very frustrating.

She is not screaming at the moment and has been resting for a few minutes.  Praying we can keep her comfortable.

On an upside, the surgical resident on call for the evening happens to be one of Dr. Hodges urology residents.  God is cool like that.

Post-Op

UPDATE: Having a lot of pain this afternoon.  Lots of tears and screaming.  Morphine every hour seems to be helping and allows her to sleep some.  Hoping to stay on top of it now.

*******************

Julia is out of surgery.  Everything went well.  Dr. Pranikoff was actually surprised at how good things looked inside.  He was expecting to encounter an abdomen full of scar tissue from her radical nephrectomy surgery.  Truly miraculous when you consider that after her kidney and the tumor were removed two years ago, he then had to explore and remove all her abdominal organs and then put everything back in. He also did an umbilical hernia repair at the same time.  For today's surgery, he went in expecting the worst and hours of work ahead.  He was very surprised to find very little in the way of adhesions, which is great news, a huge blessing, and an answer to prayer.

The Mic-Key button is in place.  For now it will just be flushed with saline until she is given the go ahead at a future post-op appointment to begin trying to use it.

She was doing great when she woke up in recovery.  The nurses all kept commenting she looked like she had just come out of a beauty appointment, not the OR.  She is still winning everyone over with those curls of hers. She is having some pain, obviously.  As usual, she is slow to admit it. When she began to cry hard they went ahead with the morphine.

They were able to get her a room on the 9th floor (peds oncology) so that she is in familiar surroundings with staff she knows.  Thank you, thank you to everyone who made that possible! It was very comforting to her to be pushed down the hall and see all her friends, saying "Hi, Julia!" She is now tucked safely in her bed, in a nest of pillows, watching Noggin and drinking her water.

This girl loves her water! Daddy took her out to breakfast last weekend and she came bursting through the door, "Mommy, guess what I had at Tex & Shirley's?" The answer? "They have the best ice water!" She knows what she likes.

So now we rest and recover.  And Mommy is secretly hoping for a nap. It's weird to put in a 7hr day by 10:30am.  Thank you for all your love and prayers :)

In Surgery...

We started our day bright and early, well dark and early I should say. Julia woke up at 3:30am because she wanted a drink of water.  I tried to soothe her back to sleep with no luck, so we decided to just watch Nick Jr instead.  She continued to ask for a drink.  By the time we left she was distracted enough to forget about it for a while. 

She has done great since we've been here.

Robin, her nurse anesthetist, is wonderful and very sweet. She fell in love with Julia very quickly. Her own daughters are teenagers now and she misses her little girls. Julia willingly and calmly went back with her to the OR. 

 They expect the surgery to take a couple hours or so. They will call us with updates. Thanks for your prayers for Dr. Pranikoff, the nurses, the surgery, and Julia.

Prepping for Surgery

First I need to say thank you.

Thank you to everyone who has been praying for Julia and her fears an anxieties about this next surgery.  In the 4 days after her pre-op appointment our days were filled with crying, fear, screaming, whining, and sleeplessness.  On Monday word went out to our friends, family, and church staff to pray for Julia and an amazing thing happened.  Peace began to reign in our home again and things felt much more settled.  I was in close contact with our ChildLife worker as we made a plan for Julia.  We decided to wait until Friday for her therapy session so that it was closer to the actual surgery day.  This was made possible because Julia was much calmer than she had been all weekend- an answer to all the prayers being lifted up on our behalf.

Friday we headed to the hospital for her appointment.  She was excited when we got out of the van to see the helicopter taking off over our heads- literally.  We had parked directly underneath the landing pad.  Crazy to watch from so close.  It was exciting, but sad to think it was going to pick up someone very sick.  I remember standing at her window when she was first diagnosed and praying for every arrival as the stretcher was wheeled down the ramp below.

We started our visit in the cafeteria, of course.  I was very excited it was barbecue chicken day! Love me some Sodexo food :) I know, I'm weird.  Julia had the usual.

We walked by to check out the surgical unit again and remind her where she would come on Monday morning at 6am.  Her surgery will begin at 7am.  We are not sure yet how long it will take, but she is the first case of the day...

Then we went up to the 9th floor.  Julia had fun pointing out that the picture of her and her friends was hanging everywhere she looked....

 Mark your calendars!! 

Saturday, May 21

First Annual Fun Walk/Run 5K for the Kids of Childhood Cancer Foundation.

www.walk4ourkids.org

Then we started her session with Ms. Stacy and her friend "Lucy".  Lucy is having surgery on Monday, too and needed Julia to tell her all about it.  We went through the process step by step to prepare Lucy, sedate her, start her IV, etc.  Julia knew the drill well.  She was somewhat hesitant and quiet, but played along. 

Then we pulled up Lucy's shirt to show her cecostomy.  This is the first time Julia has ever seen what one looks like.. At first she was scared and turned her head away, but eventually became interested.  We talked about it, touched it, and described its parts...

Then we hooked Lucy up to the tubing to do a flush.  And these amazing medical dolls can actually be flushed with real water...

In no time, Julia was doing it herself.  We flushed, unhooked, capped, and rehooked, several times.

Then we talked about staying in the hospital.  Ms. Stacy has been amazing.  Aside from doing play therapy with Julia on Friday, she also wrote letters to the OR and anesthesia describing the way we would like things to go. She was also able to get Julia a room on the 9th floor! (instead of the 8th where we were in January) This means Julia will be at 'Camp Brenner' where she feels completely at home with the nurses, staff, therapists, and setup.  This news really helped her feel more at ease. Ms. Stacy and ChildLife rock!!

Ms. Stacy then had Julia write a list of everything she wanted to do during her stay. Here's her letter along with her surgical goody bag from Ms. Stacy...

Julia is really looking forward to the visit from Cree, the border collie, that Ms. Stacy set up.  She knows the way to Julia's heart! Well that, popsicles, and paint :) She has been carrying her little Cree trading card with her everywhere she goes.

We have given her some space to process for the past 24 hours.  Tonight at bedtime she told me, "I am really excited about seeing Cree at the hospital, but I still really don't want to have surgery." I love her honesty.  We talked about it for a long time.  I told her about my own thoughts and anxieties before surgeries and empathized with her feelings.  Then we talked about going back to the OR and taking her "special gas nap", so she doesn't have to feel anything.  She said she still just wants me to go with her.  I told her I couldn't because I wasn't a doctor or nurse.  She told me I should become one.  I said that would take too many years of school.  She said, "That's okay I'll stay with a babysitter and wait for you to be done." An answer for everything.  I asked her if it would help if she took my picture with her and she said, yes.  So hopefully that will do the trick.

Tomorrow we pack.  Unfortunately, we have that down to something of a science by now.

And I finally took myself to urgent care today, too.  I've had a sinus infection for a while and last night, took a turn for the worse.  I started losing my sense of balance and becoming dizzy all the time.  So, no more denying it.  I can't go to the hospital sick myself.  When the doctor today asked how long I had been having symptoms, I said seven weeks.  She looked at me , "Seven what?!" I know, I know.  Did I mention my daughter has is on her second hospitalization and third surgery in that time? Not to mention 11 doctor's appts? I think it's pretty good I'm here already.  So with my meds on board we are ready for this week.

We are so thankful for all of you out there who are covering us with prayer, caring for Carter, sending us cards and assistance, and standing at the ready for whatever may come up.  As another blogger mom said today...


"I don't know what this week holds... 
 but I know WHO holds this week. 

And that is enough."

Time Filling

We've been trying to keep ourselves busy filling the time before Julia's surgery and hospitalization and making life seem as normal as possible.  Fortunately there was plenty going on...

Whenever we get a chance to be outside we jump on it.  It is that crazy time of year when we swing from 30 degrees to 70 degrees in 12 hours.  So when warm sunshine appears we are outside at the park, in the backyard, or riding our bikes...

It is also crazy storm season, but that also brings rainbows...

We've had some fun field trips...

To Brixx pizza to learn about how restaurants work behind the scenes...

and of course to make and taste our own pizzas!!

They even had soy cheese for Ava :) Love that face!

To visit our friends' new chicks...

and learn all about chickens, coops, and eggs...

Playing with friends every chance we get...

And our favorite blessing- new babies...

and MORE new babies- by the handfuls!!

This is Carter's favorite place to be lately.  He asks every morning if it's his turn to hold the twins. Love that sweet boy!

Surgery Countdown

Thursday was Julia's appointment with her surgeon- Dr. Pranikoff.  It is always good to see him.  We have so much respect and admiration for him.  He loves to see Julia's progress and growth.  She has come so far from two years ago when he had a very sick 2 year old on his OR table. Unfortunately, the end of all of this is not in sight for her, yet.  He has agreed we need to do the cecostomy surgery, though he reminded us he hates to have to do it.  He then proceeded to explain what he would do.  Julia will have 3 incisions on her abdomen in order to give him all the access required. Her poor belly is going to look like a tic tac toe board. He said he uses the Mic-key tube as opposed to the Chaitt-door tube.  He said it is a larger contraption but it gives us better access and clogs less frequently.  He said it will be a tight fit to get it between her hip bone and navel because her belly is so small, but he feels like it is the best option at this time.

Then he pulled out his smart phone to put us on his schedule.  I just kept praying while he typed, for God's perfect timing in all of this. Julia's surgery will be March 14th.  She will have to stay in the hospital for 3 days afterward.  They will let us know the Friday before exactly what time it will be and how to prepare.  Suddenly it is all becoming very real.  We know this is the path we have to take.  We've exhausted our options at this point.  It just makes it so much harder when they ask, "Are you sure?" and "Are you ready to do this now?" Are we ever completely ready? He also brought up bowel resection (that was our Plan B option), but agrees with Dr. Fortunato that at Julia's young age that would be a very slippery slope to go down at this point in the game.  So we trudge on with cecostomy.

When we left the appointment it all seemed so daunting again- preparing Julia for surgery again, another hospital admission, adjusting to the cecostomy, learning to change and care for it, the long trial and error process of finding the correct flushing formula for her body (there are 7 choices), weeks of more appts to work all of this out, and the list goes on. Before we left, Julia insisted we eat at her favorite place- the hospital cafeteria.

As we were eating she wanted to know more about the surgery.  I tried to keep it to the simple facts.  We also talked about surgery day.  It is my hope she will go back to the OR willingly so she can be gassed before they have to start her IV lines.  We talked about her recent ear tube surgery and are trying to get her ready for the prep process again.

It didn't take long before the stress and anxiety hit her hard.  She has been extremely emotional ever since- crying, screaming, refusing to go to bed, whining, and irrational.  It has been so long since we have seen this behavior I had almost forgotten what it was like.  It is taking a toll on everyone in the house.  I have been in touch with our Child Life specialist from the 9th floor and we are setting up meetings for her to work with Julia next week.  She hopes to be able to work through the trauma she suffered from her hospitalization in January and prepare her for her upcoming surgery. She is also contacting one of the GI ChildLife specialists to help us prepare Julia for life with a cecostomy.  It is going to be a big adjustment for her. (Here's a video a mom shared to explain what it's like to have a Mic-key tube cecostomy.) We are so thankful for Child Life for their help, advice, and expertise.

Please pray for all of these preparations over the next 10 days.  Julia has a lot to work through and we pray for wisdom, patience, and discernment in how to help her.  She takes out the majority of her frustrations on me and it makes everything so complicated when I am the object of all her anger, fear, and frustration. Just pray I know in the moments what I can do to help comfort and reassure her best.
 
I know God definitely has this place covered, but sometimes the visual reminder is very comforting.