30 January 2015

An update on Bennett

I wanted to post an update on Bennett.  Bennett is doing extremely well since his surgery.  He has been able to go to the bathroom without rectal prolapse affecting him anymore, which has now led us to the final stage of potty training - how to wipe appropriately all by yourself!  We are also most there. :)

Here are a few pictures of just some of the love Bennett received both in the hospital and after arriving home.  Thank you to those who wanted to make sure he had something tangible to know he was being prayed for and thought about.  Surprises, such as these, help Bennett associate hospitalizations/painful procedures with a Christmas or Birthday-like joy.  This is exactly why I think he went in to the surgery with such a joyful spirit.  He had been treated well during his last surgery so I believe, going in to this surgery, he thought, "this is going to be fun!" (which it was!).

Bennett, always with a sweet spirit, chose to share his gifts with Oliver.  Oliver never indicates to us that he is ever jealous or upset at Bennett.  He knows that Bennett has to go through a lot.  In fact, both boys seem to have a real understanding of and love for each other.  They know one is in pain, the other is not - one gets gifts, the other doesn't - they both seem to go through each other's pain and joy together.

The surprises sent by friends and family were not all just for Bennett.  Oliver did receive a few of special gifts of love, as several friends made sure to remember our entire family when they sent packages - something we had no expected at all.  Even sweet little Avonlea received a surprise - her first dress-up play dress.  

In addition to surprises, our sweet  and always supportive Waco friend Kimberly Back made sure to bring us a meal after we got home from the hospital, which we very much appreciated.  I wish I had a picture of what she brought us - but we devoured the meal too quickly. :)

And, this package, pictured above, was very meaningful, as written in the card were the words "with more love than could ever fit in a box."  It was like receiving a hug from friends far away.  I just had to laugh when I found included the box a roll of coins, which represented the diet cokes they would have liked to have mailed me.  My girl friends know me well. :)

Thank you to all who sent love, in whatever way you did - text, calls, emails, FB messages, gifts, meals, visits, etc.  You are those who make the unbearable bearable.  We felt and still do feel immensely loved.

16 January 2015

Hospital is full. Bennett is a rock star. We are going home!

We think Dr. Perger may have gone up to the floor to check on Bennett but she didn't find him.  Because we aren't there...and never have been.

The truth is, we never made it out of the Recovery Room.  Instead, we spent 5+ hours in the Recovery Room.  Five!

This is not usual.  I have gathered it may have been an issue with a full hospital and a shortened cleaning staff.

(Bennett is smiling because he learned that if he needs another popsicle, he just pushes this red button.)

But, for whatever the reason, Dr. Perger came back down to the Recovery Room to find us.

And this is what she found:

Bennett has done phenomenal with his recovery.  Even better than THEY expected.
So, she decided to release us!

Whooo-hooo!!!  We are headed HOME!!

"The doctor got inside my body?! She went in there??!"

Bennett did not cry at all throughout his entire ordeal yesterday...

...until I began changing him from his hospital gown to his pajamas in preparation to go home from the hospital. Then, all of the sudden, Bennett noticed his fresh scars again and began to cry. 

Once I was able to calm him down, I learned he was very scared about the blood, particularly the black blood. (Bennett later explained that he knows blood is never a good thing to see and then he also knows that things that are black are usually he reasoned surely black blood was awful!)

I explained that while he was asleep, his doctor had made a tiny cut with a knife...

"A knife!?!" Bennett exclaimed.

"...not a kitchen knife, a special hospital knife..." I interjected. "Then, the doctor went in your body and fixed your intestines."
"The doctor got inside my body?!  She went in there??!"
"...she didn't physically get inside you, sweetheart, she put a tool in there to fix your body."

Finally, I was able to calm Bennett down.  I promised him I would explain more when we got home.

Once we were home, we showed Oliver Bennett's scars. He has three, two at his waistline and one in his belly button.  They are scars from where the robotic arms were placed to perform the laproscopic rectoplexy.  

I tried not to explain too much to the boys about a robot going in Bennett's body. The boys already see those sorts of things in some of their superhero cartoons so I didn't want to freak them out any more than necessary.  Nonetheless, here is what one of the robotic arms looked like:

Bennett had a good night.  He wasn't sleepy like the rest of us were (he had slept all day) so he stayed up late playing with his toys a flashlight in his room.  Despite being given a prescription for Hycet/Hydrocodone, he has needed nothing more than Tylenol ever few hours. 

Bennett did wake up his morning asking more about his surgery and why he has blood.  So, this morning, I pulled out a few tools of my own and acted out Bennett's surgery on his favorite stuffed monkey.

First, we pulled out our medical toys to explain why rectal prolapse happens in the first place.

Then, I gave Surgeon Dr. Bennett toothpick tools to cut tiny incisions in Monkey's belly so he could fix his rectal prolapse.

After fixing Monkey's intestines, Bennett placed surgical glue on the incision sites to close him back up.

Once Monkey was done with surgery, Surgeon Dr. Bennett had a Q and A conversation with Monkey about what happened and why Monkey has black blood in three areas of his tummy.  Bennett did an amazing job articulating his understanding of what happened.  Doing this reminded me the power of role play for children in situations such as these.

Bennett is staying home from school today and won't go back until Wednesday of next week.  We will have to go up to Dallas on Tuesday for a Cystic Fibrosis appointment to monitor his weight gain and to meet with the GI doctor there.  This should give him plenty of time to recover before he goes back to school.

Bennett will be able to take a bath in a few days.  But I am most hopeful that, at some point today, his colon will become active again and we will learn whether or not the surgery worked - can he again have a bowel movement without rectal prolapse?!  What a joy that will be!! :)

15 January 2015

A million reasons to be thankful!

Our family has a million reasons to be thankful tonight.  My half-hour drive back to Waco this evening was 30 miles of prayerful thanksgiving...

We are thankful for being able to give treatments at home tonight - no need to worry about picking up a lung infection at the hospital, no need to stay in isolation while we are admitted, no need to get permission to unhook wires or give medications.

We are thankful for a hand-painted sign from Avonlea's 1-year-old class that hung over back door when we arrived home tonight.

We are thankful a giant get well card covered in signatures of some of the boys' school friends, teachers and administrators (and adorable fingerprints of those children too young to yet spell their name).

We are thankful for handwritten cards and pictures to Bennett from each of his preschool classmates.

We are thankful for a dear friend who gave up her day to watch Avonlea and put the girls in tutus to play basketball while Bennett was in surgery.

We are thankful for another dear friend who invited Oliver to spend the night, who took him to school this morning and who even helped him finish his spelling homework last night so I could finish packing for our expected 2-night stay.

We are thankful for the many texts, FB comments, emails, calls and tokens of love sent to us throughout the day and over the last week just to let us know Bennett is loved.

We are thankful for the gifts Bennett received to brighten up his day, including those still yet unopened but sent from friends from far away.

We are thankful for a nurse who told her colleague today, "this child is one of my very favorite patients."

We are thankful for a fellow CF mom and friend who dropped off handmade cookies today and stopped by to let us know she was determined that other CF families like hers never feel alone.

We are thankful for a high pain-tolerant child, who, despite having a chronic illness, sees world around him as a place full of joy and possibilities.

And we are thankful for the many many prayers sent up on our behalf.  It was so absolutely clear that God was present with us in every single aspect of today.

Ending the day fully exhausted but with much thankfulness,

We are still waiting for our room.

Brian and I were able to come see Bennett as he was waking up.  Fortunately, he woke up very peacefully.

I knew things were going well when he looked at his hand and said, "I look like a Ninja Turtle!"

The nurse came back with some Ninja Turtle stickers and I realized, he really does!

See, on the sticker, the purple thing around the Ninja Turtle's hand?

 Bennett and his Recovery Room nurse talk coloring and Spiderman.

The nurse gave him some Gatorade and, eventually, a popsicicle.  It didn't take too long before he started to ask for food.  His request?  Pizza and Cheetos!

The hospital is very full so we have been waiting for several hours and are still waiting to move from Recovery Room to a Hospital Room.

However, to my surprise, we have been told that, as well as Bennett is doing and as successful the surgery went, we may not even have to stay one night, much less 2!  I'm ecstatic!

We will be admitted to a room but they will continue to monitor him and, I suppose, let us go at some point.  The hospital moves very slowly so I've learned to be very patient with the process.

Bennett is awake and doing well!!

Surgery went well! Surgeon is happy!

We just spoke with Dr. Kress and Dr. Perger.  Everything went as good as could be expected!

Bennett's bronchoscopy and intubation went very smoothly.

Dr. Perger said that once she got in to Bennett's abdomen, she could tell that the bowel she had resected (cut out) a few years ago had already grown back - grown back so much so that it's as if she had never done his first surgery.  So, it makes sense why Bennett has continued to have rectal prolapse.

So, the procedure Dr. Perger used today will hopefully work for a while.  She put 4 sutures in and has suspended the bowel to the tissue near the sacrum bone.  This means that his bowel will hopefully not be so loose and no longer protrude when he goes to the bathroom.

I'll be honest, though.  In my heart, I know we will end up having to do this again in the future.  His bowel will continue to grow and this is likely to continue to be a problem.

But, the good thing is the procedure is minimally evasive so it should be something Dr. Perger can do in the future as needed.

I really really hate Bennett has to go through this.  But I am SO thankful for ways to repair it.  And, honestly, I'm thankful for a reprieve from rectal prolapse, even if it's for just another year or two.

Bennett is in recovery and sleeping right now.  We will see him as soon as he begins to wake up, hopefully soon.

Surgery is done!

We just got a call from the OR nurse that they are "closing him up."

The pediatric surgeon should be in in a short bit to see us and tell us what she did.  Then, we will get to see him in the recovery room.

Will update once I know more.

How Bennett is doing...

Bennett did amazing this morning!!

He was SO excited to go to the hospital and to get his "bottom fixed"!  He literally jumped out of bed cheering!  Bennett was even more delighted when I told him he could wear his Spiderman pajamas and Ninja Turtles slippers to the hospital.  He carried his beloved stuffed dog named Douglas and a tiny stuffed Dolphin with him all morning.

 The nurses were absolutely great with him today.  They explained his blood pressure cuff was a "muscle checker" to see how strong he was.  They made sure to explain everything to him so there were no surprises.  And the nurse even made sure to listen to his stuff Dolphin's heart before she listened Bennett's heart.

"Dolphin Friend" gets his heart checked too.

I requested Bennett be given the medication Versed to get him asleep.  It's like giving the kid a margarita.

Versed made Bennett very loopy, playful and, eventually, sleepy.  My favorite part about Versed is that it has amnesia qualities to it so Bennett won't even remember us wheeling him back to the OR.

For all the bad hospital/surgery/doctor experiences we've had, this one, so far, might just be the best we've ever had.  It not only helps that we know the staff and feel confident in our team, but that Bennett fully buys in to what we are doing and is happy to go along.  We'll see how he does on the other side of things once he wakes up in pain.  But, his great attitude does help calm my mama heart.

P.S. Brian and I also feel incredibly loved by all the text messages and FB messages we have been receiving this morning and over the last two days.  I can't even describe how loved we feel this morning.

Bennett is in surgery now.

Bennett went back around 9am.

Dr. Kress, the ENT, will go first and get a bronchoscopy.  Then, Dr. Perger, the pediatric surgeon, will fix Bennett's rectal prolapse after that.

This is our third rectal prolapse surgery.  Dr. Perger used the altemeier procedure  the first time.  She used glucose injections the second time.  This time she is planning to use something that is in between both of those...not as invasive as the altemeier procedure and resection of the bowel but something more permanent than glucose injections.

Dr. Perger is doing what is called a "Laparoscopic Rectopexy."  This involves "keyhole incisions" in the abdomen and tying up the bowel to the sacrum bone.

We should hear in a bit how things are going.  From the conversations I had with Dr. Perger, she is confident this will help.  She is really hopeful this might last a long time.  But she did indicate again that there is not surgery that will take care of it for forever.  The bowel is not like an appendage that, once removed, does not grow back. The intestines always grow back so that is why we may end up having to do this again in the future.  But all of us are hopeful this might work for a very long time.

We have arrived!

We are here!! Will post throughout the day!