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Flu Positive

Sunday, February 19, 2017



I feel like I couldn't make up a crazier story.  Bennett now has the Flu.

The nurse detected a spike of fever around 9pm last night. Bennett had not shown any symptoms.  In fact, he was feeling great.

We had just come upstairs from playing a night-time game of hide and seek with Brian, Oliver and Avonlea in the courtyard outside the hospital.

The fever was just a random catch because in the hospital they are taking vitals all the time.

There was a long list of things that were discussed for causing his fever.  Was his UTI not responding to the antibiotics?  Unlikely.  Was there an infection in his blood from surgery?  Again, unlikely.  Was there a pulmonary issue?  Doubtful.  But, I agreed they could draw blood and run a urine analysis to see what they could find.

Before having to make Bennett do another blood draw, I asked the physician assistant (PA) to confirm he didn't have the flu.

Upon leaving Waco with my dad a few days ago, my mom came down with the flu.  I wanted to make sure that he didn't also have the flu.  The NP agreed that it was worth checking.

A nasal squab was taken and the PA woke me up in the middle of the night to say the blood work had been cancelled and Bennett had been started on Tamiflu.

Bennett slept peacefully last night and woke up this morning feeling great.  Considering we know the source of Bennett's fever and considering he is significantly better than when he was admitted, the team has agreed we can go home.

So, today, we're going home AGAIN!

...this time, everyone in our family is on Tamiflu for the next 10 days.

What a ride,

Readmitted

Saturday, February 18, 2017

I apologize for taking so long to provide this update.  Things felt like they careened out of control for a bit.  But, I think we've finally resolved the problem and will get out soon.  :::high five:::

All day Thursday, Bennett struggled.  He didn't really feel that great, certainly not as well as he had the day before.  He whined a lot and seemed particularly needy.  

This went on all day from Bennett.  Some moments he was playful and content.  Other moments he was irritable and calling out in pain.  The only relief we could get was by venting his g-tube.

In addition, I noticed that all day there was almost no poop or gas coming out of his ostomy. Air could exit through his g-tube but there was no output from the ostomy.  He had belly pain, despite being given pain meds.

By evening, I decided to call the on call ostomy nurse at the hospital.  Maybe his output was normal for someone his age with an ostomy?  I explained Bennett's symptoms.  She reached out to his surgeon who suggested we come back in to the hospital.  The surgeon was concerned Bennett might have a bowel obstruction.

Brian and I waffled back and forth on whether to drive the 2 hours to Dallas at 8:30PM to be admitted through the ER.  But, ultimately, we decided to take him in, especially when we noticed he also seemed to have a slight fever, even on pain meds.  Brian volunteered to take Bennett since he had had the most sleep between the two of us.  When Bennett heard he'd be going back in, he turned into his pillow and cried: "I don't want to go back to the hospital!  I'm ok.  I will go to sleep!"  It was really hard to hear him protests...but we knew it was best.


Bennett finally finds some brief comfort in the ER, while holding the syringe that vents his g-tube from gas pain.

After spending literally all night in the ER at Children's in Dallas, Bennett was finally admitted at 8AM to the GI floor.  An x-ray Bennett showed he had another ileus, this time with stool buildup, so the decision was made to give him a clean out (or at least several enemas) to see if they could prevent a bowel obstruction.  A urine analysis also showed Bennet had a small amount of blood and some white blood cells in his urine.

Back at home, I sent Oliver and Avonlea to school so I could pack and get ready to go back up to Children's for the next few days.  Brian kept me updated throughout the day about Bennett's condition and what the doctors were thinking about his his presenting symptoms.  It seemed that most of the day nobody had a very good grasp on what was going on with Bennett.

At one point, I spoke with Bennett via Facetime.  I was surprised by how much pain he still seemed to be in.  He had gone with his dad to the hospital more than 12 hours before and still he was very very uncomfortable.

Around 2pm, I learned via a text from Brian that Bennett was going in for a sonogram for a potential blood clot in his leg due to complaints of pain.  Bennett had originally complained of foot pain while we were in the hospital last week.  But this symptom seemed to go away once we got home.  This time, however, pain in his foot was back with a vengeance and now included leg pain that no amount of pain medicine was helping.  

After I picked up Oliver and Avonlea from school, I headed straight to Dallas to take over for Brian.  Brian's texts continued to be worrisome.  Bennett was still not feeling well.  And Brian, having had no sleep in the ER the night before, was becoming more and more overwhelmed by an inability to provide Bennett comfort.

While driving to Dallas to the hospital with two children in tow, I realized that the transition of care for Bennett from Brian to me, with Bennett screaming in pain the background, might not be a good idea with the other children.  His screams would likely would alarm Oliver and Avonlea causing even more chaos.  I knew if I could talk to Brian for just a few minutes, then I could take over Bennett's care and relieve Brian to take Oliver and Avonlea and go rest.

So many wonderful people have reached out to me to help in whatever way we need.  When I realized my need for someone to care for the children for just a few minutes once I got to the hospital, I decided text one of those people who offered to help as she lived very close to the hospital.  I asked Amy, the Executive Director of the Cystic Fibrosis Foundation in Dallas, if she would meet me at the hospital in 40 minutes to watch Oliver and Avonlea, just long enough so Brian and I could have a conversation about Bennett's care.  Amy was amazing.  She jumped in her car, met us at the hospital and took care of the kids just as I needed - long enough for me to get my bearings.

Upon arriving at the hospital and seeing Brian and Bennett, I could tell they both were exhausted. Brian had done a wonderful job taking care of Bennett all day and night.  He had tried everything...but Bennett continued to cry out with no relief.

The first thing I did was check in with the nurses on what Bennett was being given for pain.  The plan seemed reasonable, considering we were trying to offer Bennett non-narcotic pain relief.  I tried to calm Bennett down.  But the only thing that seemed to help was if Brian or I would massage his right leg and foot at the same time.  Bennett's muscles seemed really tight.  He also complained how sore his back was.

To me, the pain looked like it was coming from uncontrolled muscle spasms.  The fact that it could be calmed with deep pressure massage made me wonder if he wasn't having "charlie horses" all over his leg.  I asked for a muscle relaxer for him.

The doctor said she didn't want to do anything until they received the report back from the sonographer, just in case Bennett had a blood clot in his leg (a possibility since he had just had surgery).  I asked for the muscle relaxer in the meantime but the doctor was very hesitant.  She did, however, agree to a stronger non-narcotic pain med of IV Ibuprofen.  While that may have helped come, any true relief he got came from Brian and my massaging Bennett's food and leg - for over an hour straight.  Bennett would start to fall asleep for 10-15 minutes but then he would wake up whining he was uncomfortable.

While the doctor waited for the sonographer's report on the blood clot, the nurse came in to do his enema. I explained that I didn't want to do anything more to him until we had addressed his leg pain. The nurse was willing to comply with my wishes but also mentioned that Bennett hadn't peed since 11pm the night before and would do well to pee.  She asked if I would take him to the potty.

Blood had been detected in Bennett's urine, as well as white blood cells.  But the doctor didn't want to assume Bennett had a urinary tract infection (UTI) until the urine culture results came back.  I explained to the nurse that I would be happy to have Bennett go pee but not until we relieved the leg pain.

Eventually the doctor reemerged to report the sonographer found no clot.  She finally agreed to try to the muscle relaxer.

Within 30 minutes or so, Bennett seemed comfortable enough for me to ask him to get up and pee.  He cried on his way to the bathroom.  And then screamed bloody murder when he peed (10 out of 10 on the pain scale is how he described it later).

After that,

he stopped crying completely.

He seemed peaceful in a way I had yet to see have seen him feel since before his surgery.  He sat there on the potty trying to go pee more, even though it was clear his bladder was empty.  I couldn't believe how much calmer he felt.

Burning while peeing, feeling an urge to pee even when the bladder is empty...those both sounded like UTI symptoms to me.  Add to it the fact that he had a low grade fever and we knew blood had been detected in his urine, as well as white blood cells.

I asked to speak with the doctor about the fact that I believed Bennett had a UTI.

She was hesitant at first but I began explaining to her my reasons for while I thought Bennett had a UTI.  She said, "I know they were waiting for the culture results first."  I said, "yes, but those might take days and he needs to be treated now."

She pulled up the urine analysis report and agreed the test results, while not a conclusive culture, seemed consistent with a UTI.  I showed her a video I had taken of Bennett in agony only 2.5 hours before and then showed her how different he looked now that he had peed and been given a muscle relaxer.  At this point, he was walking, talking, standing up straight, smiling, even playing.  She agreed that there was no benefit to waiting and that the evidence looked like a UTI was the culprit.  She ordered him to be given antibiotics asap.

By this point, Brian had already gone with the children to my sister's house for the night.  So, I sent a video to Brian of Bennett in his current form.  Brian was shocked.


Brian responded via text to my video of Bennett feeling so good: "Are you telling me I listened to him writhe in pain all day and it was just a muscle relaxer?"

I explained that the combination of muscle relaxers and his emptying his bladder is what seemed to give him relief.  The reason he didn't pee for over 9 hours is likely due to his fear of pain when he peed.  But that was likely only exacerbating the problem.

And the reason for the ileus/slow bowel?  An untreated UTI.  Many times, if the body is fighting an infection, it will slow the gut.

So, while the three enemas and cupful of miralax we gave him was helpful, they were likely just treating the symptoms of an untreated UTI.  And the UTI is likely due to the bladder catheter Bennett was given in surgery and had to keep for days.

Last night before bed, Bennett was given his first antibiotic to treat his UTI.  At this point, he is staying on muscle relaxers and continues to feel tremendously better.  He had a very peaceful night and has slept all morning.

They started him again on solid food this morning.  We will see how he feels throughout the day.

Day 7 - We've been Discharged!

Wednesday, February 15, 2017

We received the sweetest Valentine's surprise yesterday: 

We were discharged!



Yesterday morning, we woke up at 5:45am with several visits from the Pulmonology and Surgical teams (we usually have 3-5 different people rolling in the mornings - the resident, the fellow, the attending, etc).  Then, around 6am, Bennett was given bloodwork.  Sweet guy was very brave. 

Unfortunately, they didn't get what they needed so they had to come back again a few hours later and redo his bloodwork.  I started to refuse a second around of blood work (since Bennett had had such a rough time with 2 ostomy changes the day before and an early morning blood work attempt that didn't work).  But, the doctor convinced me that if it looked good, they would discharge us.  So, we complied, found he had good results and we were released!


I wanted to share a picture of some of the sweet cards and balloons Bennett received while he was in the hospital. Most of the cards were from his class at school.  There's nothing better than sweet words from tiny people.



Avonlea and Oliver were very excited for us to come home.  It feels good to be together as a family again.  We are very thankful for my parents who came in to town to be with them for the last week.


At one point last night, while I was unpacking from the hospital, Avonlea found this little doll and infant-sized ostomy bag that the Child Life sent home with Bennett.  When she found it, I sat down on the floor and talked to her about the doll.  

I explained that the "little boy" doll had had to go to surgery and the doctor had to fix his body.  But to fix his body, the doctor made his poop come out of his tummy (totally not true but the best way to explain to a 3 year old).  I showed her how to take the sticker off of the ostomy bag, how to place the ostomy bag on the "little boy" doll and how the poop gets in the bag.  Then I showed her how to open the ostomy bag to get the poop out.  

Avonlea really loved playing with it. It was a bit like pretend-playing "put a diaper on the baby doll," except this was with an ostomy bag.  I wanted to help her feel as comfortable as possible with the concept so that when she sees Bennett's ostomy bag, she won't be scared.  She played with the doll by herself for a while, repeating the steps I had taught her.  Then, she explained to my dad what she was doing. Considering how naturally nurturing she is, I will not be surprised if she doesn't turn out to be a nurse one day.

Last night, the first night in my bed in a week, I slept 13 hours straight.  Did I dream about fairies and sugar plums while all snug in my bed?

No, I dreamt about snakes.

Snakes everywhere.  And I was very freaked out about them.  I had my children with me in my dream. I was worried about my children getting across without being bit by a snake.  At one point, I tried to tell others in my dream about the snakes, who seemed moderately concerned.  But I remember having to tell myself to calm down.  I knew the snakes had never bitten anyone and would likely wouldn't lash out and hurt me.  But I was very freaked out.

Eventually in my dream, I noticed that, however the snakes had arrived, they had each come with nice tiny paper box full of snake food.  In my dream, I knew that if I could get rid of the snake food boxes, I might have some chance of the snakes moving on to somewhere else.  But I didn't know how to do that, since they were each showing up with their own food.

This morning when I woke up, I thought more about my dream.  They say dreaming is how we process the previous day's events.  While I'm no dream interpreter, I think those snakes represent my worries.  My worries feel like they are everywhere - threats everywhere.  I know in the back of my head that things are going to be ok.  Each worry may not necessarily be dangerous itself.  But my worries are scaring me.  And I feel like, if I could just get rid of the "food source" of my worries, then maybe my worries will go away.

It's tempting to think that now we are out of the hospital, things are better.  They are, on some level - home is certainly more comfortable and we are SO glad to be home.  But coming home from the hospital with a new medical condition is also the beginning of something new.  Now we must focus on establishing a new colostomy routine, ordering new colostomy medical supplies, deciding how and when to do g-tube feedings with a colostomy, what kind of cover Bennett's bed needs at night in case his colostomy bag breaks/leaks, figuring out how to do chest percussion therapy with colostomy, whether or not Bennett is going to school with his colostomy, if he doesn't go to school how am I going to get anything done, what clothes are going to fit around his colostomy bag, whether or not having a babysitter to watch the kids is an option, what traveling looks like, etc.

In addition, the time after a hospitalization is typically a time for recovery - recovery for catching up on sleep, recovery of reconnecting to the children, recovery of working through the emotional baggage that came from this surgery and an unexpected colostomy.  It may take us another week, or two or three to adjust to a new normal and to get back to where we were.  But we will do it.  (Ironically just in time to prepare for another surgery.  At least this one will be to hopefully take down the colostomy and put our boy's body back together.)

Thank you again to all of the many many people who have contacted us, who have been praying for us and who continue to follow Bennett's story.  I cannot communicate just how much we appreciate all of the support, in big ways and in small ways.

Thank you for loving us,

Day 6 - Bennett learns of his colostomy

Tuesday, February 14, 2017

Yesterday was the day I dreaded ever since I heard the doctor say right after surgery that Bennett had been given a colostomy.  Yesterday was the day, five days after surgery, Bennett learned he has one.

Bennett has continued to heal.  They were able to remove his foley yesterday so he is now able to pee on his own again.  Bennett was also able to move from IV pain meds to oral pain meds of Tylenol/Motril.  Instead of IV fluids, he is getting fluids through his g-tube. He is now pretty much unplugged from everything that would keep him in the hospital.  I am hoping we will be discharged today.

But, besides the typical "being unhooked from machines" and "eating/peeing/pooping" that is required to be given the great light to go home from the hospital, there was one more thing that we have had to do this admission before getting permission to go home: demonstrate proficiency changing Bennett's colostomy.

And before we could do that, we needed to *tell* Bennett about his colostomy...


So, yesterday afternoon, while Brian took Avonlea and Oliver on a scavenger hunt around the hospital, Katie, a soft spoken Child Life Specialist at Children's came to talk to Bennett and me.

I sat at the end of Bennett's hospital bed.  Katie knelt down on her knees next to his bed.

I didn't even know where to start so I let Katie take the lead.  Katie said, "Bennett, do you know why you came to the hospital?"

Bennett, surprisingly interested in conversation with Katie nodded and said, "to fix the tiny hole that my poop was going through"

Katie nodded, "yes, and did you know that sometimes, when kids come to surgery, doctors have to make it so that parts of their body rest?"

Bennett replied, "no."

Katie said, "yes, and sometimes when the doctors do this - when they need the bowels to rest - they put in an ostomy.  Do you know what an ostomy is?"

Bennett shook his head no.

Katie said, "an ostomy is a bag with a special sticker that sticks to the side of your body...it's where the poop can come out while the other parts of your body rests for a while."

Bennett seemed mildly interested and said, "oh" as though he had learned something new for the day.

Katie paused...a pause that felt like it took forever.  But I reassured myself Katie's pause was important.  Just two days ago, our CF psychologist and a psychology intern had come to visit Brian and myself and to answer questions we had about telling Bennett about his ostomy.  One of the main take aways I took from our conversation was this: don't give a child more information than they are ready for. Let them ask questions.

Katie waited to see if Bennett would ask a question.  Bennett did not.

Since it was really important that we have this conversation with Bennett, Katie went on and asked, "And, Bennett, did you know *you* have an ostomy?"

In bewilderment, Bennett said: "I do??"

Katie said, "yes."

Bennett's next question was, "does it hurt?"

Katie replied, "not usually but maybe at first."

When Bennett didn't ask to see his own ostomy,

Katie showed Bennett an example of an ostomy bag in case he wanted to touch.  He did not want to.

Bennett asked if the ostomy would always be there.  Katie said, "that's a good question.  We can ask your doctor."

At one point during our conversation Bennett began to tear up.  At that point, I did too.  I think we were both feeling scared.

After a little bit more time, Katie asked if she could invite an Ostomy Nurse in to the room to show Mom how to change his ostomy.  Bennett agreed.

Bennett's ostomy supplies

The ostomy nurse came in and was very sensitive to our situation (in fact, everyone has been - not one nurse or doctor or resident or fellow said one word to him about his colonstomy - every single person respected my wishes that we wait until Child Life could tell him - I was and still am incredibly grateful and impressed with a desire from everyone that Bennett be told in an age-appropriate and time-appopriate way).

The ostomy nurse started by asking Bennett if we could move his toys he had in front of him out of the way so that she could get to his colostomy to remove and replace it.  He agreed but grabbed a toy, one that was big enough to block his eyes from having to watch what she was doing.

I didn't realize notice how the toy was being used by him to block his view until we started really messing with his colostomy.  But it became apparent at some point that he didn't want to see what we were doing.  That was fine.  Nobody asked him to look.

The process of cleaning/removing a colostomy bag involves pulling away the bag which is stuck to the skin and cleaning the area.  This was *tremendously* painful for Bennett considering he just had abdominal surgery.  After that, the nurse cut the bag down to the right size, placed a spray that acts as a skin barrier, put glue on the sticker of the bag and placed the bag in the right position.  This was a familiar process to me since Bennett had an ileostomy at birth.  But I appreciated the refresher.

Before the nurse left, she explained to Bennett that he can do anything with an ostomy that anybody else can do - he can run, play, jump and even swim.  This seemed to really help Bennett feel better.

Once we were done changing out Bennett's colostomy and Bennett felt better, I asked Bennett about telling Oliver and his Dad: "They live with us so they are likely going to see your colostomy at some point.  Would you be interested in having them come in and learn about your ostomy so they can ask questions to you and Miss Katie?"

Bennett surprised me again with his cavalier response, "oh sure."

Within a few minutes Oliver and Brian filed in to the hospital room.  Oliver was very laid back when hearing about Bennett's colostomy.  Katie explained that pooping in to a bag seemed weird but really wasn't.  She said,  "some kid's bodies just need things to work a little differently."

At one point, Oliver explained Bennett's stoma looked gross."  Katie very gently explained that the pink part he was referring to is Bennett's intestine on the top of the skin and the black part is the poop.

Oliver asked a few more questions like, "Why is it round?  I thought the intestines were a cylinder" before both the boys' interests waned and their conversation dissolved into potty humor.

I felt like our conversation with Bennett went really well overall.  I shared with Oliver later that Bennett's ostomy is a private thing and that we shouldn't talk about it without asking for his permission first.  ...I do understand the irony of my statement since I am writing about Bennett's colostomy on his blog.  But my hope is sharing about it will help others better understand all that Bennett (and our family) has been and is going through.  I trust that any conversations Bennett has with his peers about his condition will be done on his own terms.

I realize I am taking a risk by putting Bennett's story - our family's story - out there.  But Brian and I have talked much about this and believe that, at this time, sharing our situation is the right thing to do.  If, at some point in the future this changes, we will response accordingly.  My deeper belief is that if people better understand one's condition, they can be more compassionate and understanding.  I believe this with children as well.  I have no doubt that Bennett will, in some capacity, choose a close friend to share this information with at some point.  And when he does, we will help coach everyone involved on how to respond.  There's nothing to be ashamed about if you have CF or issues with your GI system or if you need a colostomy.  Lots of people do, through no fault of their own.

Brian and I have thought a lot about whether or not Bennett will go back to school with his ostomy.  If, like the nurse said, a child with an ostomy can do everything anyone else can do, then why not?  But, we haven't made any decisions.  Bennett needs time to heal physically and emotionally.  For now, future decisions are on hold.

Late last night as I was lying down to rest for the evening, Bennett complained of a burning on his back.  I came to his bedside to investigate.  What I saw was poop from his colostomy bag was leaking and rolling down his back.  I contacted the nurse who agreed with me that we would need to change his ostomy bag.  It was such a shame.  Colostomy bags are made to last 24-48 hours as changing them often can irritate the skin.  But, now, Bennett faced having to have two colostomy bag changes in less than 6 hours.

I asked the nurse if I could change Bennett's ostomy since I was supposed to change it with the ostomy nurse in the morning one more time before we go home.  The nurse agreed to allow me to change it with her coaching.  As I expected, it was relatively easy and straightforward to do.  What I had not expected was exactly how painful it was going to be for Bennett, especially considering the ostomy crosses his incision line and requires gentle pressing on his very sore tummy..  Bennett screamed in pain the entire time.  It was very hard to watch.  I felt like he couldn't get relief because cleaning the ostomy requires so much manipulation of the area.  It made me SO sad for him.  Even as I was doing it, I remember thinking how unbelievable it is to watch this child continue over and over and over to experience these painful situations. "Why, God, do you allow this, especially of a child?" I prayed in my head, knowing I will likely never have a sufficient answer to this question.

Once the nurse had gone, I lied with Bennett as he tried to calm down.  We just lied there processing how he was feeling.  Through sobs, he explained how badly it hurt. I apologized again and again.  I just tried to reassure him I was with him and doing everything in my power to make it better.

I said, "Bennett, I want you to know none of this is your fault.  Nothing you have done has caused this. You have done everything right.  It's just your body that is broken."

Bennett tried to catch his breath and then wept more, "I don't know how to fix it."

"Fix what? " I asked, "your colostomy?  your CF?"

He said, "all of it."

Combing my fingers through this hair, my own tears streaming down my face, I said, "I don't know how to fix it either, buddy."

Day 5 - Bennett is feeling better!

Sunday, February 12, 2017

Today was a really really good day!  Bennett had made a 180 turn mid-day today from where he was mid-day yesterday.  This picture captures some of the joy we saw on Bennett's face today.  In fact, I love this picture because it shows his pent up laughter.  Bennett would get so tickled that he would have to hold his breath and wince (of course with a giant smile) to keep himself from moving too much and hurting his abdomen in the process.  At one point, he had the entire room laughing just because he was trying not to laugh.  It was really healing for us all.  


We took Bennett for a walk around the floor today. The doctor has asked that he move at least 4-5 times per day.  Bennett cried and moaned the entire time he walked.  But we kept encouraging him and the nurses all clapped for him as he made the lap back to his room.  However, once he got comfortable in his bed, he began to feel even better than he did before he walked.  I think this was the confidence he needed to know he would be ok.  In fact, he even said, "I think I can sit up" and did so so we could take a picture of it!


Bennett's urine output continues to look better.  There is still blood in his urine but much much less than before and we expect it will only get better.  Bennett is on antibiotics to prevent any infections.  We are hopeful he can get his catheter out tomorrow.  Bennett was able to start taking some deep breaths for the first time today.  He even felt good enough to blow bubbles.  

Bennett's GI system is waking up more and more.  We started seeing output from his colostomy and he began to show signs he is hungry.  We hope he can eat tomorrow.


Oliver and Avonlea spent another day with us at the hospital.  They both found parts of the experience to be boring.  But, Child Life gave us some toys and stickers to play with.  This evening, before Oliver and Avonlea went home for the night to my sister's home not too far from the hospital, we took a family walk throughout the hospital.  Bennett's mere sitting up was good for his body's healing. Children's Medical Center has some lovely downtown Dallas views from its hospital.  And, let's be honest, even getting on an elevator can be fun when you've waited days for your loved one to begin feeling better.  In her usual little mama fashion, Avonlea insisted on walking right beside Bennett, holding on to his chair the entire time.

Brian and I are doing well, considering.  Personally, it has been very helpful to have the kids visiting with us, in addition to the company and help of my parents.  Specifically, the children bring an element of playfulness and honesty to our situation.  It's hard to stay stressed when your 3 year old cheerfully buries her face into your belly pulling your shirt over her head, saying, "Let's pretend I'm a baby in your tummy and I'm being born!"  And honesty about the reality of the situation is easier to appreciate your 9 year old son, on the verge of tears while standing in the cafeteria line in the basement of the hospital, spends 10 minutes giving you "all the reasons" he's upset about what he can't do right now, venting his frustrations and disappointments.  My own big cries will come later when I have a chance to really grieve the loss this surgery brings to our family.  But for now, I am working to be present in the moment, experiencing whatever emotion that moment might hold.

I expect tomorrow will be a big day.  I'm hoping it's the one day we need to show the doctors we're ready to go home. So. Ready. To. Go. Home.  

Day 4 - Ileus

Exhaustion is setting in for me.  Last night, once I crawled in to my tiny hospital couch bed, I found I couldn't keep my eyes open enough to write about our day. So, I gave up and just went to sleep.  Even now, after a few hours of rest, it feels challenging to write.  But I want to make sure I write about our day yesterday since it was a very important one. 

To start off, we have made no progress in sharing with Bennett about his ostomy.  Bennett has been in no condition to talk to about his colostomy so that continues to be something we are putting off for another day.  Before we can leave, the hospital staff must have the confidence that we can care for his ostomy.  So, there will be some kind of attention given to it in some capacity.  But I am not sure when.

As far as going home goes, we haven't yet begun talking about that.  The steps that would be necessary to go home include: Bennett's bladder foley being removed, Bennett's physical activity being increased, Bennett's pain being managed, Bennett's lung hygiene regimen being returned and Bennett's ostomy care being addressed.

On Friday evening (night before last) when we were trying to get him moving, we noticed Bennett's stomach seemed quite distended.  Noticing this and his being so uncomfortable, I suggested to the nurse that we begin venting his g-tube, a trick I learned from our last surgery a year ago.  The nurse and I were both surprised about how much air we found in his tummy.  I also noticed that when venting his tummy, he had really black discharge.  The residents explained the black wasn't particularly concerning as it was just dried blood in his stomach from the bowel surgery.

Bennett's Friday night seemed fairly restful.  He had a good bit of pain meds on board that kept him comfortable.

But what we noticed on Saturday morning was that when he was awake, he wasn't really peaceful nor did he wants to play with his toys or watch movies.  It seemed like the only way to get him comfortable was to give him meds that put him to sleep.  But, considering his being awake and moving is important for his recovery, it was hard to see that his being awake meant he was uncomfortable.  Even with the pain medicine Hycet on board, he was very irritable.

I began to have flash backs to his surgery last year where we kept giving him pain meds but it felt like no amount was enough - even to the point that Bennett developed a reaction to the build up of Morphine in his system.  I wondered: why does Bennett have such a difficult time with pain after surgery?

Bennett's clinical team has been very responsive to his care while we were here.  Yesterday, we continued to notice Bennett's urine output from his foley was very dark which indicates dried blood. This is not particularly unexpected since Bennett's surgery apparently required the Surgeon to cut away his bladder that was surprisingly adhered to his bowel due to scar tissue around the stricture. But, everyone was hoping he would soon start outputting pee that wasn't so dark.  Lightening of his urine would indicate internal healing.

In addition to his not being able to get comfortable and his dark urine, I mentioned to his doctors about the continued strange dark black output from his g-tube when we vented him.  And everyone could appreciate the amount of gas coming out of his belly.

Mid morning, Bennett began looking very pale. And we noticed Bennett wasn't putting any output from his colostomy, despite we had started feeding him through the g-tube the day before.  His nausea which we were treating with regular doses of Zofran didn't seem to even lighten up at all.

The doctors collectively decided to run some blood work and do a KUB (X-ray of his tummy) to see if they could find out what was going on in his belly - and to make sure he wasn't bleeding internally.

At one point, Bennett wasn't waking up from his sleep like I felt he should be able to do.  So, I caught our doctor in the hallway and asked her to come see him.  We were able to get him awake a bit more but he gave me a scare.

Our doctor, who is always willing to listen to my concerns, called in the Surgeon on call and everyone met together to discuss what might be going on.

See all that gas (black indicates air) in Bennett's tummy?  That's evidence of an ileus.
Can you see Bennett's ostomy sticking out from his skin on the left side of his body?
Thankfully, Bennett's blood work came back fine.  But it was the X-ray that showed us what is going on: Bennett has an ileus.

An "ileus" is what you call a lack of movement in the intestines that can lead to a buildup or blockage.  In this case, gas has gotten trapped in his bowels and because of the ileus, the gas can't move out.

An ileus in itself is not necessarily a serious condition (or a surprising condition considering Bennett had major abdominal surgery) but if not treated and identified, it can be a risk for a bowel obstruction.

Bowel surgery "traumatizes" the bowels.  They are handled, massaged, cut, etc.  So, it's no wonder that they need a bit of time to work properly again.  They are often described as "going to sleep" after surgery as they need a bit a rest before performing as they should.  The issue with Bennett's bowels is that they seem to move or wake up even more slowly than others bowels.  When this happens, when they become almost paralyzed, it's referred to as an ileus.

Considering that this is what Bennett is dealing with, the decision was made to stop his tube feeds (if the bowels aren't working, adding food isn't a good idea) and to begin continuous venting of his gut through this g-tube.  The hope is that by continuous venting, the air can come out.

Well, not only did the air come out, but so also did that black stuff - the dried blood...and ALOT of it:





This bag represents 330ml of dark fluid that came from Bennett's belly within hours of venting his g-tube.  THIS is what was causing Bennett to be SO uncomfortable this whole time.  Because the bowels weren't moving, this fluid and gas was getting trapped inside, causing a LOT of pain.  Because Bennett is so young, he can't yet describe his pain very well, pain was trying to be controlled through pain medicine.  But pain medicine is what often slows the bowel even more.

Fear that pain meds might actually be making it worse, doctors pulled the Hycet and Valium and gave him Tylenol through his IV instead.  It's always scary to take away a pain med after surgery but recognizing treated the real issue of his pain, a bunch of pain med wouldn't be necessary.

As far as the dark color of his pee goes, the doctor made the decision to increase his IV fluids in hope that this would flush out his system more.  It seems to be working so far.



Oliver and Avonlea spent the day at the hospital with us yesterday.  They could tell Bennett wasn't feeing well and were there when I became a bit frightened by his lack of responsiveness.  So, it was really wonderful when yesterday evening Bennett woke up feeling tremendously better.  Avonlea was the first to his bedside to rub his arm and say, "Hi Bennett!"  Bennett responded to her with a smile and silly faces.  That's when I knew we had turned a corner.

Before Oliver and Avonlea left the hospital for the night, I sat with Oliver in a sitting area outside Bennett's hospital room and decompressed with him about his day.  He expressed it was very hard to see Bennett in pain.  At one point, I asked if we could pray for Bennett.  He liked that idea.  I pulled my growing long-legged 9-year old boy into my lap.  He bowed his head and folded his hands like his little Episcopal school once had taught him to do.  I said my prayer first and then he said his.  He asked for God to put an angel in every room in the hospital of someone who was hurting.  He asked that God would help Bennett feel better.  And then he asked that God would make it so that tonight Bennett wouldn't have "dark dreams" but instead would have "dreams full of superhereos."  The thoughtfulness of his tender little prayer practically made my heart burst out of my chest.  What better thing to ask from God, for a brother who is hurting, than dreams of superheroes?

Bennett slept really really well last night and has continued to feel good this morning.  The doctors have discussed inserting another tube in his ostomy to help him get out even more air from his belly.

We will see what the day brings but I expect today to be a much better one.

Day 3 - Pain Control

Friday, February 10, 2017


I haven't written today mainly because Bennett hasn't felt well and has needed both Brian and me to comfort him most of the day.

Bennett's night last night went relatively well.  The biggest concern during the night was that Bennett's breathing slowed with the pain meds so there was a desire to minimize his pain medicine usage to prevent him getting into a danger zone with his breathing.

The main thing that we struggled with today was pain control.  We started out with continuous pain medication and a PCA (a button that allowed Bennett to click every 6-8 minutes, whenever he needed more pain medicine).  Due to slowed breathing, Bennett's meds were changed to oral Hycet with access to Dilaudid every few hours.  Still, throughout the day, we couldn't get him comfortable.

Bennett would be so upset at times that he'd beg for the room to be quiet and for "nobody to talk" or make a sound.  He would try to take deep breaths but couldn't seem to breathe deeply due to abdominal pain.  He didn't eat anything by mouth today, even though the doctors encouraged him to eat.  And he didn't play with any of his toys throughout the day.

At some point during his begging for the room to be quiet, we began to recognize that he specifically wanted nobody to talk about his care in front of him - not to him, not with him and not by him.  Nurses and doctors would come in cheerfully to explain what they were doing and he would cry out for them to stop, wanting none of it.

Eventually, recognizing he was overwhelmed by any stimulation or information at all, I put a sign on the door asking anyone who came in to not talk to him about his care.  This was actually kind of nice because it allowed for the more adult "scary" conversations to be taken in to the hallway instead over his bedside within his earshot.

At some point, Brian and I began to wonder how much of his pain was true pain and how much was possibly anxiety from the beeps of machines, the cords that hang off of him and from the people who seem to be wanting to check him all the time.  Our suspicions were raised when Bennett would whimper through tears how scared he felt when clinicians would come to the room.

While Brian was sharing this with his Mom (who is a nurse) via phone earlier in the day, she mentioned that he might do well to be given an anxiety med. Brian and I thought that was a good idea so we asked the doctor. She agreed and after reevaluating his meds decided to give him Valium later in the evening.  From what we have accessed so far, it seems like the medicine regimen with Valium has been helpful.  He seems much calmer both when asleep and when awake.

We have tried other tricks to help him feel more comfortable - like adding Zofran so he's not nauseous, slowing down his tube feeds so his tummy is not hurting and venting his tummy with the g-tube to let out any painful gas.  But it's always so hard to know what's causing pain when children are so young and can't fully describe why and where they are hurting.



The highlight of our day today was getting a visit from Oliver and Avonlea this afternoon.  It was really wonderful to see them, along with my Mom and Dad who have come to stay with them while we are in the hospital.  Bennett really enjoyed seeing them.  Avonlea was super sweet, at one point, holding Bennett's finger despite the IV on his hand and, at another point, rubbing his head to make him feel better.  She seemed concerned and curious about his condition but not afraid.  Oliver was very tender with Bennett telling him he thought he was very brave.

It was good to have my parents here - both because I was able to see the kiddos and just get a little break (my Mom stayed with Bennett while the rest of us went downstairs to the cafeteria to eat) and because my Dad, who is a physician, was able to see Bennett's condition and help us find a way to get him moving.

The issue we had had all day was when we gave Bennett pain meds, he'd relax and fall deep into sleep.  When he was awake, he would be irritable and hurting.  Although we knew the doctor wanted him up and active today...and even though we knew the more he moves his lungs and abdominal muscles, the better he will heal...we couldn't seem to find a happy medium.  Even the sweet nurse who worked so hard for us today couldn't seem to help us figure out a way to keep him comfortable and awake.  Bennett hardly did anything today but sleep or wine in pain.

However, tonight, my Dad helped coach us through how to get him comfortable *and* moving.  First, we gave him a Valium to help keep him calm.  Second, we gave him his Dilaudid, a short-acting pain med to help him feel comfortable fast.  Third, we gave him his Hycet, a slower-acting pain med to keep him comfortable for several hours.  We let him sleep for about 30 minutes until the Dilaudid was wearing off but the Hycet was coming aboard.  Then, we woke him and told him we wanted to get him walking and coughing.  Drowsy, he protested but didn't fight us much.  Even though his eyes were closed, we kept reminding him that he had pain med and that this was a good time to move.  I explained that his lungs need some coughs even if they are small (his lungs were beginning to sound junky) and his muscles needed moving (the longer they sit still, the more stiff they become).

While he stayed rested, we tilted his bed as much as possible to make it so that we could get him up relatively easily.  I grabbed his catheter, his IV pole and all of his cords.  Brian and my Dad lifted him up to his feet as straight as much as possible so that he didn't even have to bend.  He opened his eyes and tried to not walk for fear of hurting but we kept encouraging him to walk to the door.  I imagine he felt so tired that he wanted to do anything for relief so he just did what we wanted.  But what we wanted was SO good for him.  He took abut 6 steps from the bed to his door and back again.  I used his siblings outside of the door as encouragement to do it one more time: "Oliver and Avonlea have to leave now.  Let's walk to the door and tell them goodbye."

Bennett did as we asked and we called Oliver and Avonlea to the hospital door to see Bennett and say goodbye.  Their faces were both a bit fearful to see Bennett looking so weak on his feet with Brian and my Dad holding him up and excited.  We all cheered for Bennett and told him how proud we were.  I think it lifted his spirits because he was proud of himself too.  We helped him walk the 6 steps back to his bed and we laid him down.  We encouraged a few shallow coughs that I think made him feel better.

Bennett stayed awake a bit longer before finally falling asleep in the most peaceful sleep I have seen since his surgery.  I was grateful to have had my Dad's watchful eye as it gave Brian and me confidence on how and when to get him moving.  The bottom line is we need to take advantage of the pain meds as much as possible.  As soon as he feels most comfortable, we need to get him to move.  It was just so hard earlier in the day because we never quite felt he was comfortable enough.

I am hopeful that this is a good sign he is healing and we'll seen more of this kind of progress tomorrow.  I look forward to seeing our playful Bennett again.

I will write more about his ostomy and where we are on that situation soon.  But it's much more emotionally intense for me to write about right now...

Day 2 - Surgery Update

Thursday, February 9, 2017


Bennett's surgery took much longer than we had expected it to take.  We received updates during the surgery but they weren't more than: Doctor is working and your son is doing well.  After the third phone call like this, we knew we weren't going to find anything until the surgery was over.

Once the surgery was over, Brian and I were ushered in to an empty room near the Surgical Waiting Room to wait to talk to the doctor.  We both sat anxiously staring at our phones.  Brian broke the silence, "I feel like we're waiting to hear what's about to happen to our life."  I took a deep breath and said, "I feel the exact same way."  How true this statement would turn out to be.

The Surgeon came in shortly after and explained the stricture (inflammation that caused narrowing in the bowel) was much harder than anybody thought.  "It was like concrete," he said, "It would never have responded to anything we were doing with the dilations."

Clearly it was good we went in surgically to remove the stricture. Thankfully, the Surgeon was able to remove it for good.

But, the bad news is that when the Surgeon tried to sew together the two ends of the bowel after which the stricture had been removed, he found leakage in the bowel.  Leakage at the closure of two pieces of bowel can lead to leakage of stool/bacteria in to the abdomen.  Stool/bacterial in the abdomen often leads to infection.  The risk of serious infection is not ok for anybody.

So, the Surgeon explained, "I had to give Bennett a colostmy."  To allow the tissue to heal, the Surgeon pulled a part of Bennett's bowel to the surface of his abdomen to allow for emptying of waste at the skin.

While the colostomy is expected to be temporary, it will take several months to heal.

Bennett will be given a contrast enema at the end of March and, if successful, will have his bowels repaired (the colostomy taken away) at the beginning of April.

Honestly, I don't think I yet have the words to describe how I feel.  I am in shock.  I am devastated.  I'm disappointed.  I am so so very sad.  Brian and I both.

I believe this is the right decision.  The Surgeon did the best he could with what he had to work with.  He is a good doctor and wants very much to make sure Bennett is well long term.  I'm just sick over what transpired.

Bennett has woken up a few times since getting out of surgery but is mainly sleeping.  He has a pretty big scar that will need to heal.  He doesn't yet know about his ostomy.  Child Life will come visit tomorrow and help us do some medical play to work through the beginning conversations.  I dread every single minute of it.

I have more thoughts to share but I haven't been able to process many of my feelings yet.  This is not what we wanted.  I'm so sad for my sweet boy.  He deals with enough.  He deserves a break.

Bennett is in surgery.



Bennett went in to surgery around 11am this morning.  He was in good spirits, despite being slightly nervous and very hungry.  He has become very accustomed to this routine so he seemed relatively peaceful.

In fact, I was most worried about him this morning because I feared he didn't understand what was about to happen to him.  As we spoke with the doctors last night and this morning, I have became more and more aware of the significant nature of what were about to do.

I tried to warn him that even though we don't know what was going to happen under surgery, when he woke up recovery might be easy or recover might be hard.  I don't think he really got it.  But my desire was that he wouldn't feel deceived when he woke up.  I didn't tell him about the possibility of a colostomy but I wanted to warn him that things could be challenging.  What exactly a 7 year old can comprehend as he's about to go under major surgery and only cares about the cotton candy he hopes to eat when he wakes up, I don't know.  But I wanted to try to set his expectations.

We honestly didn't know much about what we were dealing with until today when the Surgeon sat down with us right before surgery to tell us the options he felt we has: all options that he said he simply won't know are a possibility until he gets in there to see the location of the stricture and to evaluate the healthy bowel.  In fact, nobody, including the surgeon knows how long this surgery is going to last.

From what I remember from our conversation the morning, the options are these:

1.) Go in and fix through his bottom - pull out the bowel and resect. (This is the easiest option as it won't require an incision from the skin.)

2.) Open his abdomen and give Bennett a strictureplasty.  (A more major surgery that the first option but would be preferred if we had to cut him open.)

3.) Open his abdomen, cut out the stricture and sew/resect the two sides of the colon back together.

4.) Open his abdomen, cut out the stricture and do a Soave's transabdominal pull-through. (This would be pretty invasive and would require a longer recovery.)

5.) Open his abdomen, cut out the stricture and give a temporary colostomy.  This would be due an inability to attach the two sides the sides together (if one side is significantly bigger than the other). A colostomy would allow for Bennett to go home and allow the bowel to heal before being reattached.  (This is not preferable because it would mean we'd have another surgery in 4-8 weeks and would require going home with a colostomy bag.)

6.) Go from the bottom, cut his sphincter muscle and fix the stricture. (This option would be only if the stricture was located in a challenging place within the bowel and the pelvis). This is by far the worst option because it might risk long term bowel incontinence.


It is 1:45pm and we have received two calls from the Operation Room so far.

One was to tell us the doctor has already evaluated option 1 is not an option.

The other call was an hour later to tell us the doctor still didn't have anything new to share but Bennett is doing well.

Day 1 - Colon Cleanout

Wednesday, February 8, 2017

Before I share about our day, I wanted to share about how we got here.  Several weeks ago, to meet the need of my own personal curiosity, I made a list of all the surgeries/procedures/diagnoses that Bennett has had in his short 7 years.  I'm not sure if I was able to capture absolutely everything and whether everything in perfect order.  But this is a pretty good picture of Bennett's health experience:

Bennett's diagnoses are in green.  Surgeries are in orange.  Bennett's recent dilations are in purple.  I love this flow chart because it both helps me see how some of Bennett's issues have run in to other issues.  And then, it also shows me that some things are just "flukes."  Either way, it feels hard to fully grasp that we are here again.  This chart helps me step back and see that if it feels like a lot or too much, it simply is.  Chronic diseases are just that - chronic.  They never stop.


Today started off with a call: a room is ready for you.  Once we received this call, we left mid-morning to travel the 2 hours to Dallas to admit to the hospital.  The surgeon working on Bennett asked to have a full day to give Bennett a colon clean out to make sure he is ready for surgery on Thursday.

It took several hours to admitted and to have things started but some time after lunch we go going.  You'd think hospital admissions and discharges would be quick but they are often very slow.  They require permission from multiple people and can linger on for an hour or more.  After providing a list of meds, answering lots of questions from several people and waiting around for orders to be entered into the system, Bennett was given an IV.  The nurse used this new thing I'd never heard of called a J-tip.  The J-tip forces air (rather than a needle) under the skin and administers medicine (in this situation, pain medicine) to the area in a pain-free way.  It was incredible to watch that by the time she put the IV needle in, the top of his hand had already been numbed.


By 6pm tonight, Bennett had been given an IV, had hours of GoLytely (which makes you poop) and had received an enema.  This child is absolutely amazing.  He handled every bit of it like a champ.  I am grateful that he doesn't have any pain when he goes to the bathroom anymore.  He is very brave and very comfortable with these things.  It's sad, because it means he's done them so frequently.  But it's good because it's not as scary as it used to be (or would be for most kids).


It's hard to believe Bennett didn't eat all day.  He was the most peaceful faster I've ever seen. He drank lots of apple juices and some Shasta Twist (the hospital's version of Sprite) but that was it. And only a few times did Bennett complain of being hungry. Even then, it was just a mention of it.  Mainly, he just played with his toys, watched TV or played his iPad.  He was incredibly compliant.  I just can't speak enough about the incredible calmness that Bennett embodied today.  Four liters of GoLytely and an enema at 7 years old was impressive.  I very much felt prayers for him.  He didn't once get overwhelmed or cry.  He just handled it in strides and trusted the adults around him. It was his demeanor that set the tone for the day.  All went incredibly well because of it.

Bennett's surgery is scheduled for first thing tomorrow morning (around 9am).  We met with the Surgeon and the GI doc today.  The Surgeon said he doesn't really know what he's going to do once he's in there.  He said it will all depend on what he finds.  We learned through our discussions that one of the worst case scenarios, unlikely but still possible, is that Bennett might be given a temporary colostomy.  This is similar to what he had when he was a baby.  We would then have to go back in to surgery again in two months to fix the colon again.  However, we are very hopeful things will work out just fine and the stricture can be repaired tomorrow once and for all.

We will know more about Bennett's situation tomorrow after his surgery.  Our prayer is for a minimally painful clean resection of the colon with no complications.  We are in good hands but it's still scary to hand him over to be worked on again.

Hopeful tomorrow will be a good day like today was,