Bennett's Colon Clean Out, My Despair and Rage

Yesterday afternoon, I came home to rest.  But instead, I just cried.  I cried and cried and cried until my cheeks were sunburned with tears and I was utterly exhausted.

My quiet tears moved to audible moans and eventually to inconsolable screams.

Brian and I had dreaded all day what was going to be happening that night to Bennett, our six year old having to endure a colon clean-out with very little pain meds while his rectum suffered excruciating pain still healing from rectal surgery.

How does a mother even comprehend and cope with that amount of pain?!  Surely, there is no pain relief for me either.

My anguish was overwhelming.  At first I felt anxiety and then sadness, helplessness and then anger...not just anger but rage.  Why was this happening?  Why has CF pushed our backs up against the wall like this?  Why has God abandoned us - abandoned Bennett?!

Last night, Brian stayed at the hospital with Bennett while he was undergoing the colon clean out.  I stayed at home, partly because I needed to rest and partly because I was in no emotional place to cope with Bennett's uncontrolled pain.

Brian texted me throughout the night.  For a long time, Brian kept texting that Bennett was doing fine, resting peacefully under the control of a muscle relaxer.

Maybe he was peaceful but I was not.  My heart was being torn in to a million pieces and I didn't know what to do.  I texted Brian about how angry I am at God.

In response, Brian sent me several verses from Job and Psalm that spoke the words we feel:

"If only my anguish could be weighed and all my misery be placed on the scales! It would surely outweigh the sand of the seas— no wonder my words have been impetuous. The arrows of the Almighty are in me, my spirit drinks in their poison; God’s terrors are marshaled against me.” Job 6:2-4 NIV

“Hear me, Lord, and answer me, for I am poor and needy. Guard my life, for I am faithful to you; save your servant who trusts in you. You are my God; have mercy on me, Lord, for I call to you all day long. Bring joy to your servant, Lord, for I put my trust in you. You, Lord, are forgiving and good, abounding in love to all who call to you. Hear my prayer, Lord; listen to my cry for mercy. When I am in distress, I call to you, because you answer me. Among the gods there is none like you, Lord; no deeds can compare with yours. All the nations you have made will come and worship before you, Lord; they will bring glory to your name. For you are great and do marvelous deeds; you alone are God.” Psalm 86:1-10 NIV 

“Lord, you are the God who saves me; day and night I cry out to you. May my prayer come before you; turn your ear to my cry. I am overwhelmed with troubles and my life draws near to death. I am counted among those who go down to the pit; I am like one without strength. I am set apart with the dead, like the slain who lie in the grave, whom you remember no more, who are cut off from your care. You have put me in the lowest pit, in the darkest depths. Your wrath lies heavily on me; you have overwhelmed me with all your waves. You have taken from me my closest friends and have made me repulsive to them. I am confined and cannot escape; my eyes are dim with grief. I call to you, Lord, every day; I spread out my hands to you. Do you show your wonders to the dead? Do their spirits rise up and praise you? Is your love declared in the grave, your faithfulness in Destruction? Are your wonders known in the place of darkness, or your righteous deeds in the land of oblivion? But I cry to you for help, Lord; in the morning my prayer comes before you. Why, Lord, do you reject me and hide your face from me?”  Psalm 88:1-14 NIV 

Once Bennett's colon clean out began, Brian and I decided we could no longer tolerate what was happening. Bennett needed pain medication and we resolved to do whatever it took to get it.

I called from home the charge nurse and asked for her to page the doctor on call to give me an immediate call back.  Brian also asked Bennett's nurse who was supporting him through this clean out to get the doctor to come asap.

The doctor on call came and watched what was happening.  She could see Bennett was agonizing in pain and, with some pushing, agreed to care for his pain appropriately.  Within a short bit of being given pain med, Bennett was calm and in deep sleep.

It was all too much for me to handle to be far away from Bennett who was helplessly hurting and to be away from Brian who was having to absorb Bennett's pain alone.  I couldn't stay at home.

Our dear babysitter Peyton had come to spend the night last night to watch Oliver and Avonlea so I could rest and be ready for the next few nights at the hospital.  But I could not rest at all.  I decided to grab my stuff and drive the thirty minutes to the hospital at 1:30am.

Brian was shocked to see me at the hospital in the middle of the night.  I hadn't told him I was coming.  He was also sad because he had really wanted me to stay at home and get rest.  He had really wanted to protect me from seeing Bennett's suffering.

But after the inner desperation and rage that built inside me earlier in the day and after the overwhelming helplessness that overcame me as Bennett's colon clean out began to kick in from afar, I could not stand to be separated from my son and my husband.

I was so angry at the team's absurd approach to allow a child to suffer that I also came down because I couldn't miss a meeting with the Attending physician/Pediatric Surgeon who had made this call and would be visiting Bennett's room the next morning.

I will blog about that meeting and how our day went today soon.  But I wanted to share something that was comforting to me even in the midst of utter despair at seeing my child suffer last night.

Yesterday during my moments alone in grief, I asked my friend, Emily, who is an adult with CF, how those with CF cope with these kinds of terrible personal hells.  I asked, "Will Bennett suffer forever because of this? How much can one person handle?!"

She wrote words that I will forever hold on to...words every parent of a child with Cystic Fibrosis or any chronic disease should hear.  She wrote:

"Will it affect him? Yea.

What will he remember? How in the horror of the hospital experience, you and his dad were his relentless comforters and companions and advocates -- and never left his side. How he wasn't in any of this alone. How it was a family journey. How home is where the family is. How through the worst pain and fear and agony, we can survive... and rise and thrive again.

You have to keep just putting one foot in front of the other right now, in autopilot mode, until you get through the sludge and see the light again.

But you have to remember, this will be just one memory of one experience in a quilt of many more. And most of those other ones will be wonderful patches."

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Bennett has been re-admitted.

I have dreaded writing this post.  It makes me SO sad, so hurt, so angry, so disappointed.

We were simply not been able to get Bennett's pain under control while we were at home, despite that we were giving him more and more narcotics.  So, this morning, I went to the ER where they decided to admit him back in to the hospital.

Initially, this morning, the doctors were concerned about an infection (a very real risk after bowel surgery). So, we did a CT scan and blood work, which showed there was no infection.

However, the CT showed Bennett had a lot of backed up stool - backed up stool possibly irritated by the surgery but most likely made worse by a combination of pain meds (pain meds slow the bowel) and cystic fibrosis (thick mucus in the bowels negatively affects bowel function).

The surgeons have two working theories on what is going on with his pain:

1.) his pain may be being caused by a suture that is too low in the rectum area and will eventually be absorbed by the body...but not for several weeks...so pain just may not be controllable or

2.) his pain may be being caused by or exacerbated by poop that has has built up at the resection point where they did surgery and is pushing on the smaller piece of colon causing pain.

If the pain is being caused by the first, they don't know what to do.  If the pain is being caused by the second, they think "cleaning him out" will help.

So, we were readmitted this morning.

They have decided to give him GoLightly, which will clean him out. However, they do not want him to get constipated again so they don't want to give him many pain meds.

Imagine if the pain wasn't controlled on a LOT of pain meds, how hard the experience of having a colon cleanout on almost no pain meds is going to be - I have to believe this is going to be torturous for him.

The doctors have said that if this "clean out" works and yet he is still hurting, they have no backup plan.  They said they will start making calls and start researching to see what our options are.  But they said they don't know what to do about uncontrolled rectum pain.  But they agree it's excruciating to experience.

I tried to understand why we are having such a hard time right now.  Why is this so terrible?  The doctors said his CF, his age and this being his 4th rectal prolapse surgery are all making this harder and more awful.

On top of that, in a separate conversation, the doctor explained to me that the poop accidents we are seeing in Bennett's pants are because Bennett is going to have to relearn to some of this bowel control again.  Apparently, and nobody told me this before now, whenenver you mess with the bowels and rectum muscles, some portion of that control has to be relearned.  So, until he does, he will need to wear pull-ups. It may take 6 weeks to gain back function.

My kindergartner could eat and poop on his own two weeks ago now has to be tube-fed around the clock and has to wear pull ups.  It makes me so so sad.

I was able to get only 2 hours of sleep last night due to Bennett's pain med schedule and his screaming/moaning all night.  So, Brian met me at the hospital this morning with his bags packed and asked me to go home and sleep.  He asked me to let him absorb what happens with Bennett when he has a colon clean out after having bowel surgery with no pain meds.  

I have this terrible feeling of relief and guilt.  I am thankful I do not have to watch my son suffer today.  I have been doing it for more than a week and I'm at a point in which it is intolerable.  But it's a terrible feeling as a mother to know I get to walk away when Bennett cannot.

What was awful just got worse.

I don't want decorate another hospital room.  I don't want to open the drapes and see the sunshine Bennett can't enjoy.  I don't want bring my other two kids to see their brother who still cannot get relief.  I don't want spend another night on a too-small plastic couch being interrupted by annoying beeps and footsteps of strangers.

This is what it's like to live with Cystic Fibrosis: to dread every single day a day like today, and then to find yourself on a day like you dreaded, and realize, it really is as bad as you thought it was going to be.

We will get through it.  But my heart is broken.

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Pain Control

Unfortunately, Bennett's last two days at home have been equally hard as those in the hospital. 

We have still not been able to get Bennett's pain under control.

Yesterday afternoon, about 24 hours after we had returned home from the hospital, while giving Bennett a dose of his Hycet, I realized half of the bottle was gone. 

It turns out that during the discharge process when we were given a pain med prescription, the script was accidentally written to cover pain lasting 2-4 days. Since we were using the higher amount prescribed, that meant we would be out of pain medicine by 48 hours of discharge. 

I was so upset. I knew it wasn't done on purpose, it was a genuine mistake. But pain med prescriptions are such a pain. By law, prescriptions for narcotics must picked up in person (no having your doctor "call it in") and there is never an option for a refill. This meant that my only option was to drive back down to Temple (1.5 hour round trip) to get more pain meds before the weekend.

I called Bennett's local Pediatrician (who is a godsend) and asked for help in getting a prescription for Bennett to get us through the weekend. Knowing our family and Bennett well, she was happy to help.  She actually raised a concern on the amount of Tylenol and Motrin he was receiving, particularly in light of how Bennett's liver is already compromised by CF.  (At that time, Bennett was already taking 1/3rd more Hycet than is typically recommended per day for kids. And we didn't see any end in sight as this medicine wasn't controlling his pain.)

The Pediatrician, Surgeon and I agreed that Bennett needed a pain med that we could continue to be dosaged up and be give more frequently but without the risk of overdosing him on Tylenol. Our only option was to stop giving Bennett Hycet and compound Hydrocodone separately instead.

So, yesterday morning I ran across town to pick up the prescription (which was significantly closer to our house than having to drive back down to Temple 30 miles away) and took it to a local compounding pharmacy in town.  

Compounding pharmacies are pharmacies that can basically make any med they want the want it. They can make meds in different forms and in different dosages. 

We needed a pediatric dose of hydrocodone without Tylenol.  I picked up and took home.

The sweet pharmacist who helped me is amazing. I will forever be grateful for the way she cared for me yesterday. She encouraged me to call with questions and explained that she would work with my Pediatrician to help us find a solution to get Bennett's pain under control. 

With her help throughout the day, we titrated the med until we could find an amount that gave Bennett comfort. 

It seems we have found a comfortable spot with pain meds, except that every time Bennett goes to the bathroom, he screams and kicks as though he is pooping pieces of glass. I'm not even kidding. Brian describes it as his responding as though he had been shot and or been stabbed and someone is continuing to move the knife around. It's been excruciating to watch.

When I spoke with his surgeon yesterday morning, she explained there could be pain due to suctures near the rectum where the resection of the bowel took place. But it seems like any passing of poop is intolerable to Bennett.

This is challenging considering we are also trying to tube feed Bennett every few hours (his appetite and interest in food have not returned). Every time he eats, he needs to poop. Every time he poops, he screams blooding murder.

So, we are monitoring the situation but leaning towards returning to the hospital if we can't control it soon. Between this and the morphine issues in the hospital, I would say Bennett has really been tortured through this ordeal. 

Brian and I are desperate for him to have relief. We don't understand the severe acute pain - why it's really happening, how long it's going to continue to last or how to stop it. But he needs a break. 

Bennett describes these poop episodes as being 10 and 11 on the pain scale. And we regularly hear him moan in pain saying, "I just want to feel better. Please make me feel better."

We keep upping his medicine dose again and again but, still, he describes his pain as being unbelievable and, still, we see his toes curl, his legs move about and his face turn red in anger. I have said too many times: "just be patient, it will get better." It's not getting better. We need to do something more.

If we go to the hospital, it will be to get IV drugs for pain that oral meds just can't address. We worry about increasing the oral meds so much that we may be making Bennett nauseated. 

We have not been able to start back his cystic fibrosis lung hygiene routine. This is of paramount importance. But it comes after making sure he is comfortable. 

Even as I write this, it's 3:25am. I am waking to give Bennett pain med every two hours. But between his pain and having to go to the bathroom, I have slept only one hour.

I will update as I know more.

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We are going home!

I can't keep from singing the lyrics from the Imagine Dragons song, "On Top of the World": "I'm on top of the world, hey! I'm on top of the world, hey!"

We are headed home today after 7 days in the hospital! Wahoo!!!!

Bennett will likely be out of school for the next two weeks due to pain. He has been told not participate in sports or P.E. for 6 weeks.

But we will soon be home to rest and recover among the people and things that make us the most happy.

I have already warned Brian that I'm going to need to be out of commission for a few days just to recover from the lack of sleep and emotional toll this has taken. But he has reassured me he will take care of the mommy duties while I'm down just as he has while I was away. He is a great husband.

We are thankful for all of the love, support and prayers sent our way this last week.  Our hearts are full!!

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Oliver and a nurse who made a difference

Each day since Bennett was admitted, Brian and I have made sure that Oliver and Avonlea travel the 30 miles south to visit their brother in the hospital.  We know it lifts their spirits (and ours) to be together as a family and know each other is doing well.

  

Avonlea knows no other world than one with Bennett suffering from CF.  However, Oliver has been there since before the beginning of our CF journey.  Oliver was Avonlea's age (2 years old) when Bennett was born.  So Oliver has essentially been along the ride for every one of the 7 surgeries and multiple hospitalizations Bennett has endured.

Because of this, we are especially attentive to Oliver's emotional needs, knowing that he is helpless in his watching his little brother undergo painful and challenging experiences.  Like Bennett, Oliver is in play therapy so that he can work through the myriad of feelings that comes with having a brother with an incurable chronic disease.  Oliver has known since preschool that Cystic Fibrosis is fatal.

Brian and I are acutely aware Oliver absorbs a lot in regard to Bennett's health.  We know Oliver often worries more and carries more than we wish he would.  There are moments when this especially peeks through.

An example of this was this weekend at the hospital.  At the time, Bennett was still regularly being hooked up to supplemental oxygen due to low oxygen saturation in his blood.  Bennett's blood oxygen rate and heart rate was reguarly being monitored through a pulse oximeter machine on the wall.  At times when Bennett's rates were high enough, he could take off his mask.  But if they dropped, we were asked to help him get more oxygen by wearing his mask.  

I hadn't thought much about the situation until Oliver came to visit that evening.  Every time Bennett's monitor would alarm, Oliver would chastise me for not paying attention to Bennett.  The first few times, I would calmly explain that Bennett was ok and Oliver should not worry.  But after a while, I began to notice true panic and fear in Oliver's eyes. 

I eventually asked enough questions to be able to understand Oliver's fear was that ignoring the alarms would mean Bennett was going to die. Oliver hardly stand the blinking lights and alarms. He told me, "I get scared when Bennett begins to cry."

I knew I needed to slow down and really help address Oliver's fears.

I would have called Child Life Specialists to help Oliver cope with everything he was seeing.  But they do not work at the hospital on the weekend.  

Instead, I turned to our nurse, a really sweet woman who has taken the very best care of us several times during our stay. 

I explained to our nurse, Allison, that Oliver has been very concerned about Bennett's health and might do well to learn more about how the machines Bennett was connected to help him stay well. 

Allison was a natural.  She turned to Oliver and in a very grown up but understandable way and explained to him how the oximeter worked (see the small machine on the right-hand corner of picture).  

Allison put both of her hands on Oliver's shoulder and said, "Oliver, the first and most important thing you need to know when working this machine is...you always must start by looking at the patient."  

She gently turned Oliver's head towards Bennett.  She said, "you always start with the patient.  If they look good, that gives you important information." This was really great for Allison to say to Oliver because, despite that Bennett was awake, moving and talking, Oliver wasn't convinced he wasn't in dire need.

Allison she continued by telling Oliver about how the machine is hooked to a very small monitor with a light on the tip of Bennett's finger.  She explained that this tiny finger monitor can often get moved causing interference and therefore a poor read.  Then, she explained what each of the lights and sounds meant.

I didn't hear all the words she spoke.  I was too busy watching Oliver's face.  I could literally see his anxiety melt away, his shoulders begin to fall and a slight smile take over his grimace.

"...But remember, the very most important thing you need to know about working this machine is..." Allison started.

"...to always look at the patient," Oliver replied. Then Oliver sighed. "Oh ok.  I was just worried." 

This moment between Oliver and Allison was one of those moments you take a picture of in your head and you know something really important happened.  

A shift happened for me in that moment as I recognized the power of knowledge.  The more Oliver knows about the machines, the treatments, the medicines that Bennett is undergoing, the more likely he is to feel peaceful about Bennett's care.  

I also think something shifted in Oliver in that moment.  Allison had just calmed my son in a very important way - a way that will be lasting.  Oliver now understands that while machines are important, it is interpreting them correctly that is most vital - and sometimes it's not the machines that we use to tell us how things are going, it is our eyes.

Going forward, I am going to always request that we have someone (a nurse or child life specialist) walk around the room with Oliver and explain things to him.  I think it will help significantly.  

Oliver knows he should be worried.  He just doesn't know exactly what he should worry about.  I think this will help calm his heart.

I wanted to mention a few other things about what Allison did for our family while we are here.   

Allison always gave Bennett his meds on time and she fought consistently with the medical staff for Bennett to have relief when Bennett was going through the morphine withdrawal and intense reaction. 

Allison also heard me on the first day of our stay talk about how concerned I was that certain hospital staff were not abiding by the infection control protocol, even as signs were approrpiately posted and we were placed in the infection control room.  

Allison heard my concerns, reported it to her supervisor and then took it to the nurses' safety huddle.  Then, before Allison left from her shift, she created a sign and put in on the door. 

We literally have had not even one issue ever since.  Doctors to Housekeeping to Dining staff have all abided by her new sign.  I am incredibly grateful for her leadership in this area and her efforts to keep Bennett safe.  I love that I didn't have to make this sign - Allison advocated for us before I even had the time to think to do it.  That's an excellent nurse. How grateful we are to have had her as our nurse three separate times during our stay.

One other thing Allison did to make our experience easier was to design this little contraption on our bed.  She placed a tongue depressor wrapped in tape on Bennett's bed to keep all of the cords from getting tangled.  I cannot even express how ingenious and helpful this was for us, especially Bennett.

Unable to break out of the hospital to grab a little thank you gift for the way Allison went above and beyond for us, this weekend, my sister helped us grab a cookie tray at McAllister's when she picked dinner for us one night while Allison was working.  We have it to her to share our gratitude to Allison for the way she went above and beyond to care for Bennett. (Oliver, also wanting to give Allison something of intramural but also having little to give, gave her his chips from his dinner. Allison took it graciously which made Oliver proud.)

Although this hospitalization has been a painful one, Allison's initiative and tender care for my children made a difficult situation just a tad bit less painful. 

A little less worry for Oliver. A little less concern for mom. A little easier time with cords for Bennett. Nurses have the ability to change lives sometimes in big ways and sometimes in little ones. We are thankful Allison is one who helped change ours.

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Monday Night Update

I am listening the sounds of Bennett breathing deeply next to me under the glow of colored Christmas lights. Bennett has been asleep for two hours now, despite multiple visits and vital-taking from doctors and nurses who have come in an out.  

As soon as the sun went down, so did he.  Bennett was given back his narcotic drip this evening to soothe the residual pain in his abdomen the other medicines just could not pacify today.  I was really appreciative his pediatric surgeon was so sensitive to his pain management and replaced the drip as soon as she realized how uncomfortable he was.  

Tonight I learned that if we can lessen the need for the pain med pump within the next 36 hours, we may be able to go home on Wednesday.  Of course, outside of controlling the pain, we still have to get Bennett's nutrition going again.  He has not been interested in eating so we decided to begin his gastric tube feeds again in order to move him forward in this area. Hopefully he will handle these feeds well.  Bennett's lungs are looking good.  We are trying to help him get back in to his cystic fibrosis lung care regimen but it might be a while before that happens.  He is off of supplemental oxygen and beginning to take deeper breaths, which are great signs.

One thing that might delay us is a possible infection of one of his incisions.  If it turns out to be infected, we will have to sedate him to allow the doctor to go in and clean out the infected site.  But, the Pediatric Surgeon isn't sure whether or not it's infected.  Blood work and further observation is necessary to determine this.

I am so thankful Bennett is sleeping.  I am hopeful I can sleep soon.  But the fear of someone walking in the room and walking my sleeping baby keeps me awake.  Once I am home, I will crash.  For now, I sleep as my body, my son and the nurses let me.  

One way or the other we will be home soon,

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What a difference 24 hours makes!

It was really great to see our brave little guy again this morning!  Last night, I went home to Waco - to wash my hair, to shave my legs and to get a full night's uninterrupted rest.  Thanks to my sister who came in from Dallas to care for Oliver and Avonlea and to my hubby who stayed the night with Bennett, I was able to recharge just enough to come back for a few more days.

When I came this morning, I brought Oliver and Avonlea with me.  Brian and I learned early on through all of our surgeries and hospitalizations how vitally important it is for our whole family to be together for at least a short period every day - Bennett needs to see his siblings and his siblings needs to see him.  (I love this picture, above, by the way.  I had asked Brian to take a picture of Bennett and me.  Bennett insisted in putting his hand over my shoulder despite it was his IV hand.  Avonlea was standing next to the bed.  When Brian said, "say cheese," Avonlea turned right to the camera and said it with us.  Obviously, he couldn't possibly crop this little nugget from the picture. :))    

The reality was that last night, when Brian was on duty, was extremely difficult.  Bennett had been on morphine until yesterday afternoon when we began to realize he was having some sort of reaction.  Technically it wasn't an allergic reaction (because it's actually a known side effect of morphine) but it was definitely a reaction to the medication.  Bennett's body was so saturated with morphine that it took what seemed like forever for it to clear his system and stop making him itch.  The poor child looks like a cat took her claws to his face, arms and back.  Literally:

As a last resort, when the Benedryl still wasn't giving him relief, the surgical team decided to stop the Morphine's response using another powerful medicine and new pain reliever.  It wasn't until 5am that he was finally able to rest peacefully.  Once the itching stopped and the pain was suppressed with a new med, Bennett began to noticeably improve.

Around 8pm this evening, Bennett really began to come back to life.

Tonight, Bennett got the all clear on his diet.  He can now eat whatever he wants.  But, unfortunately, he isn't interested in food.  (Personally, that freaks me out because he is already underweight and we not eating for 4 days isn't going to help.  But I trust he will gain weight again once he is back at home.)  

I have asked the doctors to consider feeding him through his g-tube, even if he's not hungry.  I don't want to force him to eat but I also recognize that he has a poor appetite due to CF. I don't want that to slow down our going home.

Speaking of CF, we haven't been able to do chest percussion therapy because of his abdomen pain. I am planning to talk to Physical Therapy and Child Life tomorrow to see if we can get him up and moving.  That will help the residual gas and hopefully begin to get his oxygen saturation up.  His chest X-ray shows that he is vulnerable for a lung infection right now but not that he has one, which was reassuring to hear.

I will write more about how Oliver, Bennett's warrior brother, is doing in another blogpost.  But I thought I would share this picture of the two of them today.  It was really important for Oliver to see Bennett improving today.  Bennett feeds off his brothers support and confidence so it was great they spend some brief time together today.  Thank you to our friends who watched Oliver today after a friend's birthday party.  We are thankful for opportunities for Oliver to stay in touch with what is going on but also opportunities to be distracted.

Thank you to my sister, Brooklyn, for coming in this weekend to help us.  We know a lot of our family wish they could be here to help right now.  But we are thankful for and definitely feel their love and support from afar.

We have been told that in order to go home, we need to have a solid poop.  Since we had colon surgery, the doctors really need to have the confidence his GI tract is working appropriately.  We are expecting to go home Tuesday or after.

It's 1:23am and we have not slept yet.  We are settling in now to rest.  The surgical team will be waking us up for their rounds in about 4 hours.

Goodnight,

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Not ok.

Grief is hard.  I have wondered how to deal with Bennett's grief in this situation. 

Outside of the hospital, Bennett sees a play therapist regularly to help him cope with the losses and disappointments cystic fibrosis regularly brings to him. But in the hospital it's been my and Brian's job to help him grieve and work through what has turned out to be a painful experience for a 6 year old to have to endure.

At midnight last night, when we learned Bennett would need to get a new IV in his hand - a third needle poke in 48 hours, I asked the nurse to take his old IV out and to just give us time to process what was about to happen.

I was prepared for Bennett to freak out.  But he didn't. He just resigned himself to what was about to happen. I reassured him I would hold his hand and sing to him again.  But I could see Bennett was terribly sad. 

I climbed up in bed next to him, gathered his hand into mine and I said:  "Bennett, none of this is ok."

Bennett's bottom lip curled tenderly and he began to cry.

I continued, "your being in the hospital is not ok. Your having to get another IV in your hand is not ok. Your hurting in your belly is not ok.  Your rectal prolapse is not ok."

Bennett muttered, "surgery is not ok."

I said, "yes. It's not ok we can't go home."

He said, "it's not ok I can't go to school."

I said, "it's not ok that you were itchy and they couldn't get it to stop."

He said, "it's not ok that people keep bothering us."

Together, we rotated listing many not ok moments we could think of...

Then, Bennett saw me wiping away a tear. "You're crying," he asked and stated at the same time.  Moms don't usually cry.

I wasn't sure it was best to let him see me cry.  But, in this moment, I felt he needed to know I was in the same place he was emotionally.  I wanted him to know he isn't alone in his tears.

I said, "yes, I am crying because this isn't ok with me either. I don't like this. I don't think it's ok for you to hurt.  I'm your mom. Your my baby. When you hurt, I hurt."

We sat in silent for a few minutes.  Then I said, "You know, Bennett, even though a lot of this is not ok.  There are some things that are ok, right?  Can you think of any things?"

Without missing a beat, Bennett answered, "you."

Man, I needed that.

My face lit up. I turned towards him, "does it help you that mommy is here?" 

He nodded, "you help me."

I snuggled back down against the white sheets on the bed beside him and said, "I feel the same way. It's ok that we get to be together. I like being with you."

We laid there for a few minutes staring at the myriad of "get well" cards taped to the wall in front of us. 

"Is it ok that your friends colored you get-well cards and thought about you when they did them?  Is that ok?" I asked.

He nodded.

"Is it ok that you have some really cool balloons to look at while you lay here?"

He agreed.

I wanted to tell him that more than 400 people have shared with us in some way via Facebok they are praying for him, thinking about him or rooting him. I wanted to explain to him the significance of the gift that we have received of people from all over the United States taking pictures of themselves wearing Bennett's tshirt and using the hashtag #initforbennett. But I knew there wasn't easily a way to explain this to a 6 year old who is not on social media. 

So, I tried to explain how lucky we are to be surrounded by a loving community by starting with the community he knows.  

I asked, "Is it ok that Nana and Papa and Mumsy and Pops want you to get better?"

He nodded.

"And, is it ok that Aunt Brooklyn and Mango, the dog, want you to get better?...and Uncle JC and Uncle Barrett?...Uncle David and Aunt Blair?"

Bennett jumped in, "...and my godparents?!"

"Yes," I smiled. "...and our babysitter, Peyton?"

"And Estie and Katie?" (our other babysitters)

"Absolutely, "I answered.

"And Grandmom, who died and is gone to heaven?"

"You bet," I grinned, "It's definitely ok that Grandmom in heaven wants you to get better."

"And God? And Jesus?...And that lady that does your hair?"

We were on a roll and I could tell his spirits were being lifted as he thought of the people he know who love him.  

I said, "all those things make me happy." 

He agreed but then looked down and said, "but I still feel sad."

I said, "I know. I think I feel both at the same time. I can feel happy and sad."

Bennett replied, "That's ok. It's called, 'happy-sad.'"

Yes.  We feel happy-sad.

After our conversation, I suggested we take a break from feeling sad and use our last few minutes before the nurse came in to feel happy.  So I grabbed his iPad and we watch funny cat videos and videos of babies giggling. It helped us both to laugh.

Bennett ended up doing an amazing job getting his IV. I rubbed his forehead and sang his favorite songs. He got a new sock on his arm.  

And we both felt happy-sad. 

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Making a hospital a home

One thing I learned when we were admitted to the Baylor Feeding Clinic with Bennett for four weeks straight when Bennett was 18 months old was the power of decorating a hospital room.

My mom is particularly talented at making any space warm and enjoyable.  So, this blog post is a salute to how she has taught me how to make lemonade out of lemons.  From sterile to striking, here's our step-by-step instructions for making a hospital room a home:

1.) Throw up some inexpensive Target birthday party garland up on the wall.

2.)  Dress up the windows with static clings.

3.)  Cover a wall with pictures drawn by 19ish of your closest Kindergarten friends (and, if possible, a giant card signed by your brother's classmates as well).

4.) Use colorful balloons as corner decorations so everyone can enjoy.

5.) Add a banner and lantern above the doorway.

6.) Light up a battery-powered candle to add some flickering ambiance at nightfall.

7.) Cover the nearest IV pole with Christmas lights to double as a night light.

8.) Throw in a cheap bathmat on the cold hospital bathroom floor.

There you have it!  Eight ways to make a sterile isolation room a home. :)

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Our night and early morning

Shortly after I blogged last night, I heard Bennett pipe up in a sweet little voice I hadn't heard all day: "Mom, guess what?  I think I feel pretty good."

This was the first time it since the surgery that Bennett seemed to be genuinely feeling better.  I even took a picture to document.  Bennett didn't want to give a thumbs up but he said he'd give a sideways thumb instead.

Shortly afterwards, he pushed his morphine pump and fell back asleep.

About 30 minutes later, as I was trying to fall asleep for the night, I watched him shoot straight up in bed.  Bennett won't even let me move his bed up an inch due to abdominal pain so I was shocked to see him sit straight up with no support.

It turns out he was having a nightmare.  But, even still, it was evidenced his range of motion in his abdomen has increased.

I slept for only a few hours before I was awoken by Bennett's cries at 3am.  The nurse was here for her 3am blood draw.  Bennett had just had to undergo multiple pricks for a blood draw in the early evening so I was frustrated they need to draw blood again.  But we didn't have any choice.

Bennett was distraught.  I asked for MLA cream, which helps numb the skin at the blood drawing site.  But still he couldn't be calmed down.  Eventually, he pushed his morphine pump, which did provide him a little relief and brought with it some drowsiness.

I curled up on the bed with him and began putting my hands through his hair.  I figured that the body can't process too much touching at once.  Maybe, I thought, if I caress his hair and across his forehead, he won't be able to feel the blood draw quite so well.  I began singing nursery rhyme songs to him.  It took all of my strength not to get choked up while comforting him and singing nursery songs.  This wasn't the place I wanted to be singing to him.

I hate the sight of blood and veins so I had to carefully pay attention to Bennett while also overcoming my dislike for blood to make sure the nurses were moving along as fast as they could. The nurses couldn't seem to get a vein so I suggested they use a light to guide them.  Fortunately, they agreed that might be helpful so grabbed a powerful light to place under his hand to see if that would help.  That helped and they were able to get the blood and Bennett didn't even open his eyes.

When we are done, I said, "good job team."  The nurse said, "it was your singing that did it."  Then, Bennett opened his eyes to my surprise (I thought he had fallen asleep) and began to tell me how much I had helped him.  Whew.  Mom for the win.

Bennett finally did fall asleep, only to be woken up 30 minutes later for a 4am abdominal X-ray.

Thankfully, after that we were left alone until 7:30am when the Pediatric Surgical team came by to check on Bennett and give me an update.

Yesterday, Bennett's stomach was super distended due to gas (see left picture).  We used Bennett's g-tube to vent his stomach all night so things have improved some since then (see right picture).

Bennett is allowed to drink today.

After this morning's pediatric surgery update, I joke with the team by thanking them for coming by at 7:30am this morning, instead of their typical 5:30am.  The male resident laughed and said, "well, it is the weekend."

Touché.

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Today has been very slow-going.

Today has been fairly slowgoing for Bennett with regard to improvement.

Bennett is either awake and hurting or asleep.  He cannot move without it hurting.  Even accidentally knocking the bed will cause him to hurt.

He has not eaten or drunk anything all day.  His throat hurts from being intubated.  His abdomen from his belly button down is in pain.  He gets Hycet every 6 hours.  And, he has access to a morphine drip which puts him to sleep fairly quickly.

During the morning, they kept pushing Bennett to eat Popsicles, ice cream, jello, etc.  But by lunch time, they had put him on NPO (nothing by mouth).  The Pediatric Surgeon noticed his abdomen was distended and ordered an X-ray.  I am waiting to hear back more on what they are concerned about.

I pushed quite firmly today to see a Pulmonologist for a consult.  Bennett gets his CF care at Children's Medical Center in Dallas so Bennett's CF team is not able to monitor his lungs right now.  Surgeries and anesthesia put Cystic Fibrosis lungs at risk for infection.  So, I was adamant that I need to see a Pulmonologist by days end.

Thankfully they just stopped by.  The Pulmonologist agreed we can't do a Vest treatment right now due to his abdomen pain so Bennett's lungs are forced to stay lay dormant.  Dormant CF lungs are never good.  We need to get the mucus in his lungs moving.  But right now, there isn't much we can do.

I asked if we could up his breathing treatments and possibly look at another option for percussion therapy.  The team is going to see if the hospital has access to a Hill-Rom MetaNeb System or we will get our Aerobika from home.

Bennett's oxygen levels dropped from 98% last night to 87% this evening.  We think it's due to the morphine but we have added supplemental oxygen when needed.  I am praying we will get out of this surgery without a lung infection.

We are in an isolation room on "reverse isolation."  This is the Cystic Fibrosis Foundation protocol for hospitalized Cystic Fibrosis patients.  This means that we are in a room with double doors where every person who enters our room must wear a gown, gloves and a mask.

This used to be scary - to have these strangers in our room dressed in protective gear.  But now it's more scary to see hospital workers not wearing this protective covering.  The gloves, gown and masks are not to protect them but to protect Bennett.

We cannot leave in our room and walk about the floor - a rule we abide by to minimize Bennett from the possibility of being infected by a multi-drug resistant bacteria.

My friend Kristin stopped by this morning for a visit as she was already volunteering in the hospital. A decent lunch and a visit with a friend the a highlight of my day.

Bennett have received two very thoughtful packages today - both from CF parents who understand the fight that we go through on a daily basis.  This package of sweet goodies came from Julie, a local CF mom, who was the very first CF moms I ever met.  Inside were fun goodies including Bennett's favorite, an Ironman pen. :))

Another surprise Bennett received today was a bag with four balloons that inside held a giant bear (who Bennett ended up named him "Lovey Bear") and tons of little things Bennett can do when he feels better.  My favorite part of the gift was a smaller bag of candy inside the bigger bag that was labeled: "This is for when you break free!"

The card about made me cry.  It read, "From all of your fighters, 2 lungs, 1 fight. Love you guys, Jarrod and Heather."  Brian and I yet to have the opportunity to meet Jarrod and Heather in person yet but we have the greatest admiration for them as they have two little boys with CF.  As Jarrod alluded, we are all in this together.  I was really touched to be shown kindness by others who are going through some of the same challenges we are.

Unfortunately, Bennett really wasn't able to enjoy his gifts today because he's just feeling so badly. Hopefully he can enjoy them soon.  I miss Bennett.

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