26 February 2016

Pelvic Therapy for Rectal Prolapse

"Is Bennett being followed by GI?  I think we need to get to the bottom of this - four surgeries for rectal prolapse when he's only six is a lot.

Those are the words I heard during our recent hospitalization from one of the concerned on-call Pediatric Surgeon doctors who cared for Bennett.  These words, as well as a follow-up conversation she had with our beloved Pediatric Surgeon prompted a new shift towards a more active look in to Bennett's rectal prolapse issues by his Surgeon, CF doctors and by myself.  

We have been highly concerned about Bennett's issues with rectal prolapse for some time but have not fully understood it.  It has been explained to us several times that rectal prolapse happens in CF and that surgery helps.  But that's about all we have know.  What I didn't know about until after this surgery is there is actually a therapy that can help with these kinds of issues.  It's called, "Pelvic Therapy."

So, on Thursday, Bennett had his first "Pelvic Therapy" appointment with a physical therapist who specializes in prolapse issues of the bladder and rectum.

This is Bennett's drawing he did at Pelvic Therapy.  The red line illustrates how the location of the rectum.  The yellow highlighter demonstrates how the food (apples, here, can't you tell?) goes from the mouth to the stomach to the bowels and in to the potty.
Things started out a little rough.  Bennett didn't want to go.  He has become anxious about going to new doctors appointments.  I don't blame him.  It's not fun to be poked and prodded every time he goes to the doctor.  Bennett was afraid this appointment was going to be either scary or boring.  He was really relieved it was neither.

The Physical Therapist began by showing Bennett some pictures of the anal sphincter muscles and explaining how "the bottom" works by opening and closing.

Next, the Physical Therapist gave Bennett a pen and a clipboard with paper.  She asked him to draw himself with a black pen.  Then, with a red pen, she asked him to draw a line near the stick-man's bottom to indicate muscles we would be working on in Pelvic Therapy.  

Together, the Physical Therapist and Bennett talked about how food moves through the body. Bennett loved it and was totally engaged.  I was impressed with the Physical Therapist's well-planned exercises to teach Bennett about his body.  

Then, the Physical Therapist asked Bennett to get up on the table and pull his pants down so she could examine him visually.  This is when he reached his hand out for mine.  I loved knowing how I could support him.  The Physical Therapist asked Bennett to show her on the table how he opens and closes his anal sphincter muscles.  

What was really interesting was when she said, "close," he closed the muscles.  When she said, "open," his anal sphincter muscles closed.

She said, "this is the cause of rectal prolapse.  His body has gotten confused on how to use its muscles correctly.  His body is trying to push out the poop but his muscles are closing.  This is how the rectum/bowel begins to protrude, because he is continuing to push even though his muscle is closed.

I couldn't believe it.  It seemed so simple and yet his body seemed confused.  We talked about why this would be.  She couldn't identify the cause but she explained at some point his muscles/brain got confused.  It could have been when he had C.Diff years ago.  But we really don't know.

Fortunately, the Physical Therapist reassured me that this was very much something pelvic floor therapy could address.

After we were done, the Physical Therapist gave Bennett a balloon and asked him to keep the "poop" (air) inside with his "bottom muscles" (his fingers).  Then, she made a "toilet" with her hands and asked him to get the poop out.  Bennett loved this, just opening his grip on the balloon and watching the balloon fly around the room.  It was so clear he understood that his muscles need to learn how to do that too.

The Physical Therapist explained that at our next appointment, she would like to have Bennett participate in bio-feedback.  I don't know much about what Pelvic Therapy Bio-Feedback involves except that it includes placing these little stickers near the anal sphincter muscles to help the body relearn how to open and close at the right time.  To prepare Bennett, the Physical Therapist gave Bennett a few stickers to touch and play with.  She reassured him they wouldn't hurt.  "Will they hurt when they come off?" he asked.  "No," she gently replied. 

I was so thankful for such a good appointment.  The Physical Therapist did a beautiful job teaching Bennett about his body and reassuring me that therapy may be our answer.  I am really sad that we didn't know about this therapy before now.  Bennett is just now able to take advantage of such therapy as it does take cognitive work to make it happen.  Before now, he has likely been too young. But, I wonder if we could have started it a year ago, we could have prevented this latest surgery?  It's a moot point now but at least we will have this therapy going forward in hopes we can prevent any further issues.

Bennett and I will return for pelvic therapy after Spring Break.  We will continue to go somewhere between 4-12 more times.

In addition to attending pelvic therapy, Bennett was evaluated and ruled out for Celiac disease and infection in his stool.

Everybody wants to know why Bennett has struggled with chronic rectal prolapse.  But, his CF GI doctor thinks it's "just because of cystic fibrosis."  She has explained some people with CF struggle with it for unclear reasons.

As the Pediatric Surgeon who prompted a further look in to this issue explained, "Bennett may just be a rarity.  But it's worth getting to the bottom of this if we can."  I am thankful for her prompting as the more causes we can rule out, the more hope we have to prevent this issue ever being a problem in the future. 

22 February 2016

Bennett heads back to school tomorrow!

Last Monday, it became clear Bennett was not going to be able to go back to school.  Bennett's bowel control was keeping him on the potty so often that he couldn't do much else than sit there.  As his mom, it was pretty pitiful to watch.

Everyone was deeply disappointed by this delay in going back to school as it came on the heels of a two-week hospitalization and challenging recovery.  

But, on Thursday of this past week, we began to notice things were improving ever-slowly.  Each day, it seemed, was slightly better than the one before it.  

This weekend, we made a few small trips out as a family and, each time, Bennett seemed to do better than we expected.  So, Brian and I talked it over and decided we should try sending Bennett to school tomorrow, even if only for a few hours.  

Bennett is SO excited!  Bennett hasn't said much about not being in school for more than 4 weeks.  But as soon as we told him we thought this might be a good time, we could feel the excitement build up inside him.

When I kissed Bennett goodnight tonight, he threw his arms up and said, "I can't wait to go back to school. I know what everybody is going to say tomorrow."  
I said, "what?"  
He said, "They are going to say, 'We've missed you.  How have you been?  How are you feeling?' And I know what I am going to say back to them: I'm going to say 'I'm feeling GREAT!'  And then I might have to say, 'I may have to go to the bathroom a lot but I'll play with you for a long time on the playground.'

Brian and I found Bennett's last comment (the fact that he is already emotionally preparing for possibly disappointing his friends due to his bowel issues) very enduring.  

Bennett's emerging social skills, now that he's in kindergarten, are new to us.  We are still reminding ourselves Bennett is a separate little person, not a baby anymore.  He has feelings, friendships and desires outside of our own.

I have become aware of this more since Bennett has been back at play therapy since having surgery.  Most recently, he's been asking questions in his play therapy such as "why do I have cystic fibrosis" and sharing how he plans to ask this to God when he gets to heaven.  He also has been bringing up the themes of "lies" and "being tricked."  Bennett's play therapist feels he is working through his own shock, surprises, disappointments and missed expectations that he himself collected over the last four weeks when things did not go as planned.

Brian and I have tried to be as honest as possible with him about every step of his surgical and recovery experience.  But, things have been taken out of our hands at a times - such as when his vein blew so he needed another IV or when we couldn't control his pain, or when we had to give him a clean out or when he couldn't go back to school.  Losses of any kind are hard, but they are particularly hard when they have come one after another.  I have wanted so much to buffer those for Bennett but sometimes I just don't get a chance.  Thankfully, Bennett is resilient.

We have warned the kindergarten teacher and Bennett that, if tomorrow doesn't work out as planned, I will come pick him up early from school and we'll try again a few days later.  But everyone is hopeful that this is it: we may finally have found normalcy again.

18 February 2016

Things I wish I had known going in to Bennetts hospitalizations.

Update on Bennett: things are mainly the same but ever-so-slightly improving.  He is able to stay off the potty for slightly longer periods of time than the day maybe if yesterday he was going to the bathroom every 7 minutes, it seems like today he is going every 10 minutes.  Even this slight improvement is encouraging.  He continues to need pain medication but not constantly.  Thankfully, even though he's on the potty a lot, Bennett is happy.  Legos and ipads just travel to the bathroom with him.

Picture taken during Bennett's recent hospitalization at Scott and White Children's Hospital * January 26, 2016 
One of the things I have learned about health care since having a child with a chronic disease is that so much of medicine is still unknown.

Most drugs prescribed for children have actually never been tested in children.  Many therapies that we participate in have never actually been studied to find out exactly how effective they are.  A doctor once joked with my friend, "I don't call it 'my practice' for nothing!"

This isn't to say that health care decisions aren't grounded in science or fundamental understanding - much of medicine is educated guesses.  But, it is to say that, as a parent of a child with a progressive disease, I can't solely rely on my health care teams to know everything about how to care for my child.

I have to take a super active role...and even then, even when working together, we are going to miss things.

Looking at where we are with Bennett right now and where we were, I see some things that I wish I had known before we went to surgery:

1.) I wish I had known just how major of a surgery that bowel resection is.  Brian and I were ill-prepared in our understanding of what exactly this surgery was going to mean for Bennett or for us.  I didn't know going in to surgery that he would be off of school for two weeks or more.  I didn't know he would be down for as long as he was.  Brian and I underestimated exactly how much of an insult this surgery was to his GI system.  And, we underestimated how much CF complicates everything.

2.) I wish I had known people with CF should always be given a "bowel regimen" after surgery. It wasn't until after our second hospitalization that I learned that many people, but particularly people with CF, are prescribed a bowel regimen of stool softeners and Miralax after surgery to prevent narcotic-induced constipation.  Unfortunately, this was not brought to our attention as something we should even have been concerned about until we were readmitted for significant issues of constipation.

3.) I wish I had known that people with CF need enzymes even when they are nil by mouth or fasting.  What the heck?!  I actually found this one out by doing some researching online in the middle of the night once we were home from the hospital.  Boy, I wish that the post-operative days when Bennett wasn't yet tolerating his feeds, I had known he still needed a small dose of enzymes to digest gastrointestinal mucus secretions.

4.) I wish I had known just how sensitive and complicated the GI system is and how high a risk incontinence is after bowel surgery.   I'm pretty sure this was mentioned in a list of "random things that could happen because of the surgery," along with "risk of death" and "risk of infection".  But what I didn't know is that incontinence is such a high risk that this is one reason doctors are super reluctant to do surgeries like this.

5.) I wish I knew that when I asked for a "CF doctor consult" during our hospitalization, I shouldn't have allowed myself to be pacified by the on-call pediatric pulmonologist.  If the hospital's CF team wasn't going to be available, I should have pushed for a conference between Bennett's surgical team and Bennett's CF doctor, despite that they work at different hospital systems.  The CF team's care is too important to leave out when a CF patient is undergoing surgery/hospitalization, something the other docs and I unintentionally did in this surgery.  In the future, I will not allow this to happen (Note to self: stay with this plan, even when the ENT who is about to do surgery says to me, "I don't need to talk to your CF doctor, this isn't my first rodeo.")

6.) I wish I had known better about CF and it's complications with pain meds.  CF puts a strain on the liver.  So, it's not good for Bennett to be on too much Tylenol or Motrin as they are both absorbed by the liver.  I ended up learning that narcotic pain meds are actually better for Bennett with regard to potential long term damage.  But then narcotic pain meds slow the already slow CF gut.  So, it's hard to know what's best for a CF patient.  Through our issues with not being able to control Bennett's pain, I learned that some pain meds can be given through the nostril, some orally, some through the IV - some pain meds work quickly and run their course quickly, others take a while to work but stay in the system longer.  My lack of knowledge of pain meds made my conversations with my health care providers more difficult because, I felt, like I was less informed with getting Bennett the care he needed.  Although I don't think it's my responsibility as a patient to do the doctor's job, it might have helped me to have had more knowledge about how pain meds work and which ones might be better for Bennett, considering his CF.

As it is for many mamas, it's easy for me to fall into a trap of guilt: "I wish I had done this..." and "I wish I had done that..." "It's my fault that I didn't do this..."  "It's my fault that I didn't do that..."

Hindsight is always 20/20.  I know this.  But, oh, how much I wish I could go back and make adjustments to the past.  Wouldn't that mean Bennett wouldn't have had to suffer?  I certainly wish that was the case.  I'll never know.

I do know that our care at Scott and White under our Pediatric Surgeon's leadership was top-notch and while there are things I wish had been different, these things weren't necessarily the failure of any one person.  If anything, these are failures of a broken health care system.

But I thought I'd share them as a reminder to myself of the things I hope to change next time we are in a similar situation.  I also wanted to share in hopes other CF families may benefit from our new knowledge.

I hope Bennett will never undergo another rectal prolapse surgery. But if he does, I know that:

I will be much more aware of how major future surgeries may be.
I will insist on a post-operative bowel regimen.
I will make sure Bennett takes enzymes whether he is eating or not.
I will not underestimate the complicated nature of the GI system.
I will make sure our CF team is involved in all future surgeries.
And I will have studied up much more about pain medications and the way CF complicates everything.

15 February 2016

The continued push for normalcy.

Normalcy: we aren't there yet.  In fact, today, we made the decision that Bennett would not be going to school tomorrow afterall.

It may be another may be several more.  All we know is Bennett is on the potty most of the'd be safe to say that he goes to the bathroom no less than 30 times a day.

We had all intentions of sending Bennett tomorrow.  Today, since the kids were out of school for President's Day, I took all three children to the park (it's hitting 70 degrees these days in Texas).  I chose the park based on it's access to a potty. But what I didn't realize is just how little Bennett would be able to play at the park and how much of the time he would spend sitting on the potty.

Added to the stress of Bennett being on the potty all the time is that he wants me to be in close proximity to him (6 year olds get scared easily).  This is difficult because my other two children want and need my time as well.  And, even though Bennett can wipe himself, he still genuinely needs me to care for him as it's a sensitive area.

Speaking of sensitive, Bennett is still waking up in the middle of the night crying in pain.  So, just as we have begun feeling life is returning to normal in some small ways, being awoken in the middle of the night reminds us we are not there yet.

Brian and I had a good long talk tonight and agreed that the best place for Bennett is still at home. Even short trips such as to McDonald's for some one-on-one time with his daddy must be modified to Daddy going by himself to pick up a happy meal and bringing it back to Bennett...and even then, it means Bennett bringing in a chicken nugget back to the bathroom with him. "I have to go to the bathroom, Daddy" is what we hear all day.

It's so sad and it makes me so angry.  I'm sad because this is no quality of life.  And I'm angry because there is nothing we can do about it.  This resection of Bennett's colon was a major insult to his system.  It's going to take time to go back to normal.  And while everyone believes things will eventually find an appropriate resting place, nobody knows for sure when that will be or what that will look like.

Brian and I sat down with Bennett today to let him know we felt he needed to wait to return to school.  Bennett was looking so forward to school.  But he quickly agreed that tomorrow isn't the time.

Brian and I shared how we were concerned for the other students who would need the classroom potty and wouldn't understand why he was always in there.  And we shared our concerns that the teachers might be concerned about his residual pain.

Of course, Bennett reminded us "there's a bathroom on the playground" and "there's a bathroom in the gym" but we reminded him we want him to go back to school in a healthy place where he can focus on playing on that playground and gym, not finding the nearest bathroom.  He agreed.

Then Oliver began to cry.  He later pulled himself together and revealed he's jealous that Bennett gets to stay home and not go to school.  We reminded him that Bennett would prefer to change places with him in a heartbeat.  He agreed that not staying home on the potty is better, even if it means he has to go to school.  But it was an emotional day for all of us.

On top of that, I face a new challenge, which is figuring out how to get a break during the week to be able to do the things I need to do outside of the home.  At this point, Bennett can't come with me to the grocery store or to run errands as he his "need to go" is so frequent.  I have already reached out to friends who have recommended names of babysitters or nannies who may be able to help me during the week.  But it's an additional burden to now have to worry about - something I had thought as of yesterday wasn't even going to be an issue.

I cried with Brian today because it's embarrassing to have a child with bowel issues.  How do you explain to people that your kid's pooping issues are so disruptive to your life?  It just feels weird.  And, on top of that, I carry guilt that this is my fault in the first place.  If I hadn't agreed to the surgery, then maybe we wouldn't be here.

I have more to share about what the doctors think is going on based on our recent Cystic Fibrosis Clinic visit and about a wonderful surprise visit Bennett was given to our home on Friday afternoon.  But it may take me another few days.

For now, I must share that we aren't yet back to normal.

08 February 2016

Life after the hospital...

Life after the hospital has been good so far...although, we aren't back to our full normal yet.  

I am a bit choppy in my thoughts these days so I apologize if this blog post reflects my choppy thoughts.  We are all still trying to figure out if we're coming or going at this point.

Bennett is home from school this week, which has turned out to be good because a lot of Bennett's time during the day is being spent on the potty.

We aren't really sure yet why Bennett is having to go to the bathroom so often.  It may be the Miralax we have been instructed to give him.  Or it may be that he is relearning how to manage his bowels.  Maybe both.  But, either way, he is on the potty probably about 10 times a day.  

When Bennett isn't tied down to the potty, he's often been tied down by his feeding pump.

To keep Bennett healthy, he is currently being tube fed 6 Peptamin Junior cartons per day - one for each meal, one for a snack and two at night.  But often, we can't tube feed him all 6 due to the fact that there aren't enough hours in the day - feeding him causes him to go to the bathroom so he has to get up and then come back over and over again.

Tube feeding him at night are difficult for the same reason - because he ends up having to wake up go to the potty.  Bennett can eat by mouth but his appetite just hasn't come back yet.  I am hoping once he goes to school, we can stop the lunch tube feeding and help him gain back his own hunger cues.

Outside of being on the potty or being tube fed, Bennett has to do his 30-minute long breathing treatments twice daily.  It's a lot for a 6 year old to have do endure day.  Honestly, sometimes I forget he is only six.

Bennett and I will go see his CF Pulmonologist and CF GI doctor on Thursday and will meet again with his Pediatric Surgeon for a follow up on Friday.  So, I hope we will get a clearer understanding of what is causing him to be on the potty all the time.  What is scary is that it is the very straining on the potty that causes rectal prolapse in the first place.  So, I'm hoping everything returns to normal soon.

Despite Bennett's daily regimen, he is much happier home.  He is enjoying all of the wonderful gifts he has received since being in the hospital.  They have been nice distractions at home.

Bennett has had good and bad days recently, with regard to pain.  But meds are controlling it.  We are just trying to use less narcotics and more children's tylenol/advil.

Our family has really enjoyed being together again.  Like with any stressful situation, each family member's needs have become heightened since the hospital - the children are more needy than usual and Brian and I become less patient and understanding with each other.

Thankfully, this weekend, Brian and I had a chance to visit with our Couples Counselor to process together what just happened to and within our family.  Brian and I had stayed so connected during the hardest parts of Bennett's recent situation but as Bennett and I came home and re-acclimated with the family, Brian and I found ourselves more easily frustrated with each other.

One of the first things our Couples Counselor said to us when he saw us and heard how we were doing was, "I would have been surprised if you guys were not at each other's throats at this point."  It felt good to be reminded that being disconnected from each other in the midst of this is very normal.  It's easy to expect yourself to act "normally", even in the midst of not-normal circumstances.

Brian and I spent our joint therapy hour sharing with each other how we were feeling.  Brian explained he felt numb, yet unable to emotionally unpack what has been going on.  I shared how I have been feeling overwhelmed, scared and lonely.

We talked through the last two weeks - how terrible it was to watch helplessly Bennett scream in pain and how terrible it was to sit at the bottom of the bathroom floor with no real way to comfort him until things eventually got better.  For so long, his pain just seemed to come in waves and no amount of medicine or comfort seemed to help.

After listening to us share what it was like for us to watch Bennett in pain, our therapist paralleled Bennett's physical pain with our own emotional pain, reminding us how we too have experienced unending waves of pain that we have not been able to control - pain that has had us emotionally flailing about at times, sometimes inadvertently hurting each other.

Our therapist helped us remember that in the same way we are gracious to Bennett in his pain, we must be gracious with each other as well.  Neither of us mean to hurt the other - our reactions towards each other are merely coming from the unbridled chaos we feel inside.

We also talked about our needing to be emotionally connected, even in our pain - about how Brian's being numb may leave me lonely...and how my need for support may not always be communicated in a way that helps Brian to be successful in helping me.

Thankfully Brian and I were able to use the time with our Couples Counselor get back on the right track with each other so we can be more supportive to each other going forward.

Of course, not only does it help me to be connected to Brian but it has been a huge help to have my mother in town another week until we can get completely back up on our feet.

We are so appreciative of her willingness to give up time away from her obligations and her home to come care for us.  As much as I hate what has brought her to our home, I am very thankful for the special time all three children have had with their "Mumsy."  She has been a fantastic helper, organizer, grilled cheese sandwhich-maker and support to us all.

Personally, I am starting to feel better.  I am finally getting enough sleep (hallelujah!) but have felt less run down.  Although, I have discovered there is a very good reason why people offer to go to the grocery store and provide meals in situations such as these: when you're overwhelmed with grief and chaos, it's very hard to make decisions of any kind.

You can't think straight enough to remember what to buy at the store.  And you just don't have the energy to think about what to cook for dinner.  Taking decisions off one's plate (no pun intended) can be such a gift when you're facing a challenge like your child's unexpected lengthy hospitalization. "Please decide for me" has been a common phrase as of late.

In fact, on Friday, I accidentally left my wallet at the boy's haircut appointment.  I appreciate my friend Kimberly for returning it me!  It's been easy to forget the obvious.

I think some of what I am still trying to process is how this recent situation fits in to our bigger story.  Bennett is 6 years old, has had 7 hospitalizations, 4 surgeries to address rectal prolapse...and hasn't even had lung issues yet.

Lungs issues are inevitable and are only a matter of time.  So, what does his future look like?

I know he will be fine.  He always is.  But there is also some part of me that recognizes this isn't really fine.  I often have to tell myself, "things will be fine" because I don't know what it means if it isn't.  But, what if I allowed myself to consider, "this isn't fine...and CF just isn't going to ever be 'fine.'

That's what I'm grappling with internally.  I know I will continue to do so.  Nobody has answers.  Nobody has a crystal ball.  Nobody knows how Bennett's story will end...or what chapters we will face next.  I know this.  But it doesn't keep me from wanting so much to know, just so I can be ready for the next battle.

The reality is, sometimes we don't know the next battle, even when we are face to face with it (as we were in this most recent situation).  We had no idea how difficult this surgery was going to be.  We underestimated the complications we would run in to with CF.  We underestimated that, just because we have put Bennett in to surgery 6 other times, this 7th one wasn't a big deal - as though somehow putting your kid under for surgery over and over is somehow "normal."

I think the human heart wants to normalize even the not-normal as a way to cope.  But I am trying to continue to remind myself, CF does not play by the rules...and nothing with CF is ever normal.  I'm just not sure exactly how to accept that.  I imagine it will be a process.

This week, Brian and Oliver came up with a creative way to love on me.  Brian hid several notes for me for me to open, one of which had this Bible verse on it with an illustration from Oliver.

Brian shared with me that knew he had given me some really important Bible verses that I read and appreciated in my grief and horror over what was going on recently with Bennett.

But, he told me, "I didn't want to leave you there."  So, this is the Bible verse he wrote for me and then below is the picture that Oliver drew to go with it:

I'm not a gal who loves reading the Bible (my husband is Bible scholar enough for both of us).  But it is in moments like these, the Bible can come alive to me.

My favorite line of this verse is: "Can a mother forget the baby at her breast and have no compassion on the child she has borne?"  Though she may forget, I will never forget you!"

As I grapple with feelings that God has abandoned us to this terrible disease, I am holding on to God's His very character.  

No, I could never forget my baby...and I know that, even more so, I can be confident that God will never forget me.  May this be a reminder on my heart today and all this week.

04 February 2016

Home again, Home again, Jiggity Jig!

We are home!

No more masks, no more IVs, no more beeping, no more food trays, no more medical students, no more labs, no more x-rays, no more asking for permission to get medicine, no more waiting all day for the doctor, no more stuck inside, no more interruptions!

We are home - surrounded by people and things that heals a heart!

I took this picture right before we left the hospital. That smile and the sparkles in his eyes speak volumes!
We were discharged around 4pm yesterday.  Our last day out the hospital was relatively peaceful.

I was hopeful we would go home but experience has taught me that you never know you're actually leaving until you have discharge papers in hand.

Yesterday morning, I woke up at 2am with Bennett crying in pain. They had stopped his Tramadol again due to slowed breathing during the night.  So, he was given pain medicine as soon as we asked. I went back to sleep to wake up only 2 hours later to his crying again in pain.  A dose of Hycet made him feel better.  Throughout the day he still needed consistent pain meds.

I was a little disappointed that he seemed to need pain meds more than the day before, since we had had such a good day Tuesday.  But when I told our Pediatric Surgeon that I was disappointed, she said, "oh, don't worry about that.  It's totally normal."  She went on to explain that recovery often works like that: as the patient feels better, they will attempt do do things they wouldn't normally...and then they will often hurt more the next day.  She explained it's part of the process and that this was the very reason she wanted to see Bennett to stay home from school one more week.  Often kids will go to school and forget they need to be careful so that, by days end, they are in a lot of pain.

We waited all day to see the doctor and get the green light to go.  I have found that the more critical of a patient you are, the earlier in the morning the doctors come by.  But the less critical you are, the later they seem to come.  That isn't much fun to anxiously wait all day to be discharged but I was so tired I just packed up and sat around.

We didn't get the thumbs up until after lunch.  But then, after we had packed up all of our stuff (which was enough to fill two little red wagons), Bennett went to the potty and we found a good bit of fresh blood in his stool.

This is the view outside our window into the hallway.  Because we were on reverse isolation, we had to always keep our door closed.  So, I stood here many times looking out past the words that the nurses placed on the window to decorate the door.  The "Quiet Time 1-3pm" sign across the hall made for hospital guests to take note was interesting to see as I would have much rather it have said, "Quiet Time 1-3am" and been for the nurses. ;)
Concerned, I told the nurse who told the resident who told the chief resident who told the Pediatric Surgeon.  Ultimately, everyone agreed that the blood was not concerning.  But is was worth everyone paying attention since Bennett has complained of rectal pain for so long and since he had surgery on his colon.

Finally, we got in the car and took off for home.  Until halfway home, the hospital called.  I thought they were concerned about the blood and wanted me to turn around (which God himself would have had to come down from heaven and forced my van to around at this point).  It was Bennett's nurse that was calling.   Thankfully, it wasn't about the blood, it was about Bennett's Vest...that I had forgotten.  :::Face palm:::

I told her I was headed home and I wouldn't be turning around.  I explained I would come tomorrow or Saturday.  (One could be proud of me for not telling her I was never coming back!) 

So, I will go pick up Bennett's Vest today or tomorrow.  Thankfully, we have the AffloVest that we are able to use until then.

Home has been a wonderful place to be.  Avonlea and Bennett have had the best time together. Bennett was delighted to find several packages that had come in the mail for him.  Brian and I were incredibly touched to find several meals that had come in the mail as well.

Besides seeing my children laugh and play with each other again...and besides being able to go to sleep in my own bed early last of my greatest moments last night was: getting a home-cooked meal, especially when they are served on paper plates that we could just throw away.

No need to prepare a meal and no need to wash dishes - both are gifts from friends near and far who have indicated they are with us in this journey.

This meal is one of the one of the meals mailed to us from dear friends who used the website "Take Them A Meal".  Meals from "Take Them A Meal" apparently show up frozen and ready to put in the oven and come with a card that state directions and offer a picture of the meal.  This meal was delicious!
I am so thankful for the meals we have been given as they have already and will continue to allow us to focus on being with each other, not taking care of dinner each night.

I am also thankful for the grocery supplies that have been dropped off while we were in the hospital - supplies such as toilet paper, milk, paper plates and plastic silverware.  Not having to worry about washing dishes or running to the store for the basics after being in the hospital is like feeling like you've won the lottery (especially when we ran out of toilet paper this morning)!

We have had friends send such creative things that have filled gaps we didn't even know we had.  We are thankful for friends who have offered to drop off Starbucks, who have sent gifts to the children, who have sent gift cards or have picked up our children and allowed them to play at their houses.

It's so hard to ask for help but the overwhelming love and support have made asking for help when we have needed it just a little bit easier.

I asked Bennett a few minutes ago, "I am so glad we are home. What did you miss at the hospital?"

He thought I said 'what do you miss about the hospital'.  His face dropped all expression and he answered, "nothing."

Realizing he had misunderstood me, I said, "No, I said, what did you miss about home while you were at the hospital?"

He said, "I missed being together.  I missed old my toys.  And I missed the noise.  Being at the hospital is quiet and that is lonely."

Then, he interjected, "...but that's what Daddy said home was like.  Daddy said it was quiet here without me."

So, cheers to noise of home - the laughing, the crying, the banging, the shouting.  Home is where my heart is.

03 February 2016

Our best day yet!

Yesterday was a very good day! Bennett was able to start his chest percussion treatments, the Vest again. The picture above shows just how well he is doing. He was being very silly and decided to pose like this on his own. When I tried to adjust his mask, he cocked his head and said, "I know what I'm doin' lady" and then cut up laughing. Clearly our old Bennett is back!

Our morning started out with an X-ray, which came to his room. Everything seems to show his abdomen is doing well.  After our Pediatric Surgeon came by for a visit, Bennett was untethered from his IV fluids, placed on a normal diet and encouraged to go outside and play.

We had a mid-morning visit from a dear friend from Waco who brought breakfast and goodies (speaking of goodies, we have received so many gestures of kindness in the last two weeks - we are hopeful that those who have showered us with love would know just how appreciative we are - our hearts are full of gratitude!).  

It was nice to have a few minutes to chat with another adult.  We have had two other visits from close friends since we have been in the hospital whose pictures I forgot to capture.  I was thankful to have my friend Rachel come today, on a good day, as it is easy to enjoy friendship when one's heart is happy.  

Bennett was able to go outside today. His first time since his surgery two weeks ago.  The Texas warmth in January was glorious. 

As a precaution, when Bennett is outside of his room at the hospital, Bennett has to wear his mask to prevent his getting any bad germs that would hurt his lungs. He can take the mask off outside but his light blue eyes actually tolerated the sun better with the mask.

Bennett's pain gradually went down throughout the day, eventually moving to a "0" by noon. This is the chart that I had originally placed on the wall across from his hospital bed for us to use to identify his pain.  This was particularly important when I felt the doctors were dismissive of his pain.  The more he could quantify how he felt, the better it was for everyone. 

I overheard Bennett tell our friend today: "At first, I was a 10. Then I was a 9 and then an 8. I stayed an 8 for a while. Then 7 and 6 then 5 and 4, lots of 6s and 4s. Then I was a 2 and now I am a 0!" It was great to hear him articulate what life has been like for him.  

Bennett was able to go most of the day with no pain medicine, although we used Hycet and Tramadol to address any breakthrough pain. 

This picture is of Bennett trying to run in his hospital gown. He is holding his little finger out because it has tape and numbing cream on it as he was supposed to have blood work done once we returned to the room. 

I loved seeing Bennett have enough energy to run. I was surprised to see how much energy he has since the child has not eaten much in the last two weeks. (I dread to know how much weight he has lost.) But thankfully, we have started back his normal g-tube regimen so hopefully we can get his nutritional status improved.

Yesterday afternoon, my mom came again to watch Bennett for me. I could have driven home but I've banned myself from driving as I am too sleep deprived. 

Instead I asked the social worker to arrange a room at the Ronald McDonald House here in Temple. There, I was able to get a free room to sleep for a few hours and a bathroom to shower. 

I am so very thankful for Ronald McDonald Houses. Brian and I stayed in this very same Ronald McDonald House six years ago when Bennett was born. It was strange to go back...yet it was very familiar.  I so appreciated the rest so that I could come back and take care of Bennett at night.  I seem to be averaging about 3 1-hour naps per night.

Yesterday afternoon, Avonlea's preschool teacher texted me that Avonlea had woken from her nap at school screaming, "Bennett!"  I almost couldn't believe her.  It's hard to realize that even a child as little as 2 can have anxiety over her brother's well-being.  

I will sadly admit that she and Oliver had to witness at home Bennett's screams when he was in excruciating pain before this hospital admission.  We tried to shield Oliver and Avonlea the best we could but his cries could be heard throughout the house and they went on for much too long.  

I found Avonlea's teacher's text to me to be bittersweet. How thankful I am to hear her tiny heart is with her brother, even when they are separated.  But how sad I am to know that she has not gotten through this experience unscathed, either.  I will be particularly attentive to her needs and feelings of safety when we return home.

I don't know what today will hold but I'm hoping our successful day might be enough to allow us to go home. I'm feeling ready. I think Bennett is ready. Now we wait to hear if the doctor agrees.

02 February 2016

Definitely feeling better!

I apologize for the delay in updating the blog.  The good news is Bennett is getting better.  The bad news is, as Bennett gets better and I feel less stressed, the adrenaline is moving out and making way for exhaustion.  Almost a week of no sleep is catching up to me big time.  Last night, I couldn't see straight or think straight enough to type.  But it's 4:47am now so here's what happened yesterday.

We are finally seeing some sustained pain relief for Bennett!

Bennett was taken off his pain meds early yesterday morning because of concerns his respiratory rate and heart rate had dropped.  Typically, Bennett breathes 22 breaths per minute.  But while he was sleeping, he began breathing only 10.  Bennett's heart rate is typically 80 beats per minute.  When he was sleeping, they dropped to 50.

I was definitely worried to see Bennett breathe so slowly.  Waiting to see when your son's chest rise is a slightly frightening feeling, even if you know he is ok.  This slowed breathing happened last night as well.

The good thing is, even when Bennett's heart rate and breath are slow, Bennett looks great, easily awakes and gets back to his normal breathing patterns within a few hours of being off his pain meds.  The pulmonologist who saw Bennett yesterday agreed that his slowed breathing may be a combination of having pain meds on board and feeling relaxed enough in the absence of pain.

Thankfully, Bennett's pain meds were reestablished once his pain began to kick back up a few hours later.  Once Bennett was put back on his meds yesterday, his demeanor changed and his personality came back.  We had a great day of playing with toys and even sitting up to color!

Midday, I was super relieved to get a visit from our favorite Pediatric Surgeon who had returned to the hospital after having the weekend off.  It was great to see her, even though she hated to see us back in the hospital again.  Our Pediatric Surgeon and I had been in touch throughout the weekend so our re-admission was not a total surprise.

What was a surprise, according to our Pediatric Surgeon, was the fact that Bennett was so backed up when he came in.  The Ped Surgeon apologized for not having recognized that Bennett might have needed an Xray over the weekend when I spoke with her over the phone about Bennett's inability to benefit from pain meds.  The doctor explained she had not even imagined that he would be getting backed up in his colon so quickly after surgery.  She explained that what she thinks happened is that we thought he was pooping normally, when in reality, the liquid stool was going around the hard stool which was building up in Bennett's system.  We agreed that a colon clean out after surgery was a significant improvement in his care.

The Pediatric Surgeon and I talked about Bennett's current pain regimen.  She didn't seem bothered by the amount of meds he was on.  She suggested we stay on Tramadol and Hycet but start weaning off the IV meds first, since our plan is to go home on an oral pain medicine regimen.  No longer afraid that a doctor would allow my child to anguish in pain, I agreed with the Pediatric Surgeon about stopping Dilaudid, a fast acting IV pain med.

We talked about starting up Bennett's feeds again and ways to keep Bennett's gut moving.  We are going to start trying to give Bennett a gentle laxative and stool softener in order to keep him working well in the GI area.  I think this is going to be our personal challenge and something that I will continue to need to work with our Cystic Fibrosis team, GI doctor and surgeon regarding...getting Bennett's GI system working efficiently so that he is neither constipated nor loose in his stool so that rectal prolapse does not happen.

The issue with CF is that there is thick mucus build up in the GI track.  So, it's easy to get constipated and find oneself with a bowel obstruction.

As far as why Bennett screams over pain in his rectum, the Pediatric Surgeon feels like there may be a tear, anal fissure or ulcer inside Bennett's rectum causing his pain.  She does not want to try exploratory surgery because there isn't anything they can do about it but said if we keep him comfortable and his stools soft, time should heal it.

It's so strange to talk to two doctors about the same issue, helping Bennett and keeping him comfortable, and feel like the conversations are so different.  With the On-Call Pediatric Surgeon, there is such a feeling of defensiveness on both sides - he doesn't trust me and I don't trust him.  With our favorite Pediatric Surgeon there is such a sense of trust and teamwork.  I feel like my Pediatric Surgeon trusts me as a mother and trusts Bennett as a patient.  I put a lot of trust in her as the doctor.  She is good at what she does and she takes seriously my own concerns and suggestions on ways to improve Bennett's health.  That inherent trust between doctor and patient goes a long way in working together.  The other is also true.

Yesterday afternoon, I went back up to Waco for a few hours to get a shower and to go to therapy.  I very much looked forward to having a hour dedicated time to just process what has been happening.  My mom came to town this weekend so that has been a big help for us to have another adult who can drive and watch the children, especially as Brian continues to work.

I also looked very forward to seeing Oliver and Avonlea.  Oliver's sleep is being impacted by our family being separated.  He is really sad that he is getting his mom in short rationed moments.  I called him at school yesterday just to check in with him and let him know I am thinking about him.  But I know there is no real way to soothe his loss in this situation - not having his mom and brother there.  I remind him regularly that Dad and I are working as hard as possible to get us all home and back together.

Avonlea has also been impacted by mom and dad not being home regularly.  She has been punishing us by refusing to hug us when she sees us or not wanting to be around us when we are home.  When Bennett was born and our family went through a very similar situation as this one, I had a child life specialist tell me that toddlers, in their anger and disappointment over what is going on, will try to punish their parents by refusing to go near them when they are reunited.  She taught me, and I remember this even today, that I should take seriously 2 year old's feelings.  I need to respect that she feels anger towards me for leaving her and sadness for feeling abandoned and that the best thing I can do is to not take it personally.  Instead, I am to love on her when she is ready.  It definitely hurts to have my 2 year old reject me when I have such little time with her.  But I also have the confidence that just as 2 year old Oliver recovered from our first trauma with Bennett, so too will 2 year old Avonlea.

Bennett and I Facetimed Avonlea tonight before bed.  At first, she wouldn't talk to me.  But then, I pulled out the ace card: I asked her to sing songs with me.  We sang Wheels on the Bus and Old McDonald which was a special bonding moment for both of us.

So, now having had some time to reflect on what just transpired these last weeks, I think this is how we got here:

Last week, Bennett had surgery and was in the hospital to recover.  We struggled to get his pain under control.  (We don't think it's that Bennett's pain was more than normal but that Bennett's resistance to pain medicine helping is higher as he as been given a lot of pain medicine over the course of his life due to the number of surgeries he has had.)

Bennett ended up getting too much morphine built up in his system.  This caused an allergic-like reaction that made morphine intolerable.  This took a full day to figure out and then resolve with some really powerful medication.  Once off morphine, Bennett began to thrive on his new pain regimen.

Bennett's IVs kept stop working (he had 3 in 36 hours) so eventually I requested that we try to go to oral pain meds only (to prevent having to have more IVs).  The doctor, seeing we were anxious to go and that Bennett was feeling well, allowed us to discharge from the hospital.  But what we didn't know was he was becoming severely constipated.

So, instead of healing and feeling better each day, we were finding Bennett's pain could not be covered by his pain meds.  We kept trying to give him more pain medicine but we couldn't seem to control the pain.  It turns out we were probably adding to the problem, not helping.  But nobody knew that.

Eventually, we were readmitted to the hospital.  Bennett's pain, now having not been adequately controlled for some time was unbearable.  Bennett was given a colon cleanout to relieve a potential source of his pain.  Bennett was taken off his meds to prevent further constipation.

When immediate overnight intervention required Bennett's pain to be appropriately controlled and when Bennett's colon was cleared of stool, we saw Bennett's personality begin to emerge again.  All of the sudden he was now feeling good enough to play and eat.

Those two things allowed a break in the pain cycle which seemed to be exactly what Bennett needed to begin to have sustained relief.  Now, even with no or few pain meds (which happens when pain meds are not given on time), Bennett's pain is staying at a much tolerable level (we're talking worst pain is an 8, rather than off the charts).

Having now addressed the cause of Bennett's pain and having stopped the pain cycle which made every thing Bennett did intolerable, we are seeing Bennett improve.  He is moving easier, eating more and caring for his lungs better.  Rectal pain that may have once been unbearable is still painful but now bearable.

In the coming days, his body should heal, his pain should subside even more and his behavior should become more normal to his daily life.  We have also seen a continence to his bowels that we weren't seeing before.

This morning will begin with new bloodwork and X-rays.  We are continuing to monitor Bennett's bowels.  (Gosh, I hate the amount of radiation this child has had at only age 6.  But what else do we do?!)

I am hoping we can start bolus feeding Bennett, instead of keeping him on a continuous feeding drip. I think we have pain medication worked out so we will stay on that regimen for now.  And I am hoping to get Bennett outside today.  I'd love to see him walking around more.  We also want to try to get him to wear his Vest for his treatments.

We are making big improvements so I am hopeful we will be home soon.

01 February 2016

Improvement...but docs take the pain meds away again...

Brian slept on the couch.  I curled in a ball in the chair.  Bennett slept soundly in his bed nearby.  We waited for the doctors to arrive.  Hours went by. 

Finally, around 9:30am, we asked the nurse to call the On-Call Attending Physician, the doctor ultimately responsible for Bennett's care this weekend.  I was fired up to talk to this doctor about the train-wreck of a protocol that was given Saturday night.

The On-Call Pediatric Surgeon, who is not our primary pediatric surgeon, but a colleague who was on call for her at the hospital this weekend, came in with two Medical school residents trailing behind him.  He is a big tall bald man who ironically has the last name of Little.

He shook our hands and then asked how the night went.  We explained it had not gone well. But, we explained, things turned around once pain meds were given.  The doctor seemed uninterested.

The doctor brought us over to the computer to show us Bennett's CT scan.  He seemed to want to prove to us that Bennett had a belly full of stool - a fact that neither Brian nor I disputed.

After spending a lot of time explaining how much bowel was in Bennett's tummy, the On-Call Attending Physician made his case, repeating what the Medical Resident had told to me the morning before: Bennett's pain problem is his ultimately pain meds - pain meds caused slowed gut, backed up gut is causing pain.  

I said, "we agree that Bennett was backed up and needed to be emptied.  I'm with you on that.  But the reality is we don't necessarily know if his constipation is due to the pain meds.  He may also be backed up because the pain in his rectum is so intense that his bowel muscles are refusing to push the stool through."

The On-Call Pediatric Surgeon surprised me when he acknowledged that I had a point.  But then he repeated: pain meds cause constipation - we need to stop Bennett's pain meds for him to get better.  

I told him again that I understood that pain meds slow the gut.  But I also explained that we have witnessed our child in excruciating pain over the last 11 days and that I was unwilling to allow it to go on any more.  I explained that I could get on board moving away from opiates, if that was possible.  But, what I would not get on board with is my child being left to needlessly anguish in pain again.

I offered multiple other ideas to the doctor in my effort to think outside the box: what about an epidural? What about a shot to numb the rectum area? What about the new pain medicine Relistor?

The doctor shot down each idea in a way that made me feel that the only thing he was interested in was hearing me agree with his plan.  His plan was to stop the opiates but start a new pain medicine called Tramadol.  He also wanted to start Bennett up on continuous tube feeds at 25 ml/hr and give a stool softener.  I was fine with all of that, except pulling him off the pain meds.

I said, "so, let me make sure I understand, is the next 24 hours basically a dance?  Are we basically going to try to get his gut moving while also trying to keep him comfortable?  So, you tell me if we are where we need to be on the gut and I tell you where we are with his pain?"

The doctor looked straight at me and said dismissively, "yeah, maybe you should be more mother and less doctor, work with Bennett on some calming exercises and leave the doctor stuff to me."

I looked him back square in the eyes hidden behind his thin glasses and said as clearly as possible: "I'm fine with whatever we do as long as he does not suffer.  I will not watch my child in pain any longer."

And off he went, with his medical students trailing behind him.

We waited for some time to see what orders the doctor would put in.  Would he take away all our pain meds?  Was I going to have another day to watch Bennett struggle?  Was I going to fight this team of doctors all day long?  I was fully prepared to be the biggest thorn in their side.

The nurse came in shortly after the doctor's and my conversation and helped me see what orders might have changed.  If the doctor orders meds, they can be given.  If he doesn't, then we can't give pain relif.

Thankfully, we realized they had not adjusted his pain medication, they had only added two new medicines and a tube feed.  The nurse was allowed to give the pain meds PRN (which is "as needed").  I made sure to ask to get the pain meds every time it was available in order to stay on top of the pain.  But I was full of anxiety all day.  When would they pull the order and stop his pain meds completely?

Thankfully, they didn't.  And so, we continued the day as normal.  The nurse and I worked as a team to keep Bennett comfortable.  He received all of his pain meds on time, except Hycet which we gave to Bennett only twice in the day, in the moments when his pain could not be controlled.  For the most part, his pain was much better.

This was a smile I was able to capture today while Bennett was playing with his Power Rangers, something he hasn't felt well enough to do since his surgery.

The colon clean out had been very successful.  Bennett was starting to feel hungry throughout the day and started asking for food.  By the end of yesterday afternoon, he was beginning to smile and play with his toys.  (His playing with his toys, I have realized, is a gold standard of how Bennett is feeling.) Bennett even felt good enough to Skype one of his buddies at the end of the night.

I could tell I was going to finally be able to sleep.  Around 10pm, Bennett and I turned off the lights and both fell to sleep.  Of course, I knew we'd be up early for a 4am X-ray and bloodwork.  But for now, I could sleep knowing Bennett was happy.

So, imagine my surprise at 3am this morning when I see a medical resident standing silently over my child's bedside, his nurse standing still near by.  They were counting his breaths.  "We are concerned about his breathing," the doctor explained.  "We aren't going to give him any more narcotics because they supress his breathing."

No meds again?!  I can't do this.  I won't do this.

I explained I didn't want him to be pulled from his meds because then the pain gets out of control and we must spend hours trying to catch up.

The nurse explained that yesterday he was breathing comfortably at 22 breaths per minute, now it's 10.  Yesterday, his heart rate was, at the lowest, 71 beats per minute, now it was 50.

Obviously I was concerned as well.  Surely I didn't want to see something happen to Bennett.  I didn't blame the doctors, I just felt scared.  We had had such a good day yesterday.  Why this?!

I quickly consulted a doctor friend: "should I be concerned??  Is he now having lung issues?"

My doctor friend asked how he looked and what his pulse ox looked like. I told him Bennett looked great. He was alert and talking, albeit sleepy.  His blood oxygen was 99.

My doctor friend reassured me these signs are not likely respiratory distress due to pain meds but signs that we are finally controlling pain well.  The reason his breaths are slowed?...because he is finally relaxed.  The reason his heartrate has slowed?...because his body is not feeling pain.  Anesthesiologists actually use both of these signs are measurement of patient's pain - if, under anesthesia, a patient's heart rate and breaths per minute go up, the anesthesiologist actually knows it is the patient's body's indicating there is pain.  My friend who is a doctor reassured me that Bennett's stats, even though they were lower than usual, were nothing to worry about.

I presented this perspective to the 5 Medical Students who just came in the room about 10 minutes ago.  The lead Medical Student agreed I had a point.  But he explained neither he nor I had the power to change what was.  (He alluded to the On-Call Pediatric Surgeon whose orders everyone was having to obey).  The lead Medical Student said, let's "see how he does this morning with his pain."

I can't help but feel a bit manipulated by the doctor.  Was this the plan all along, to keep the meds for a day and then just take him off of them?

I am trying to remind myself that people would never be manipulative with my child's health or well being.  I am trying to remind myself to trust the people who are charged with caring for him, not distrust them.  But it's hard.  Sometimes, I feel like I have to spend my time fighting against providers at times, rather than working with them.  This On-Call Pediatric Surgeon has shown me no different.

When I asked the doctor, "is this a dance," what I was asking is, "are we working together as a team - are we depending on each other - I depend on you as an expert of post-operative care.  And you depend on me as an expert of my son's well-being?"

Instead, of working with me, this doctor decided to insult me - to invalidate my knowledge, experience and power as a mother and to discount my pleas to relieve my son's pain (calming exercises!?).

No, dear sir, I am not going to leave the "doctor" things to you.

I am not a doctor.  I am so much more.  I am the coordinator of my son's care.  I am the one who birthed him. I am the one who has been at his bedside through every one of his 7 surgeries.  I am the one who has the most complete picture of his medical history.  I am the one who knows more about his life-threatening disease than you do. I am the one who recognizes his emotional, physical and educational needs.  I am the one who is responsible for his success in life.  I am the one who loves him and will fight fiercely for him.

I am not going to leave things to you.  To get to him, you must go through me.

I don't know what's going to happen today.  Bennett has not had a bowel movement since his colon clean out.  I know that is to come.  I worry that he is going to struggle with that if he doesn't have pain under control.  But I also know that he is lying next to me still sleeping soundly.  So, for now, I wait...I wait until the On Call Pediatric Surgeon arrives (which I doubt he will any time soon, if at all) and I wait for Bennett to indicate when he needs relief from pain.  Maybe, maybe, neither is to be feared.  Only time will tell.

But I will risk being labeled a hysterical mother.  I will risk being perceived as a mother who can't bear to let her child cry.  But I will not risk my kid going back through the hell from which he just came.

This is not just about Bennett's pain anymore.  It is my own pain that I will not tolerate bearing any longer.