08 February 2016

Life after the hospital...

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


  1. It brings me so much joy to hear of peace and sweet relief. No family deserves it more. I pray that you are all able to continue taking the baby steps you need to in order to continue this recovery journey. Sending you all so, so much love Breck. You inspire me and I love keeping up with your little warrior's journey. <3

  2. You are in my prayers as I have traveled the CF journey to its final destination. I hate this disease, but together my daughter and I resolved that it would never beat us up fact the spiritual strength it gave us was the positive result. First I showed her, then she showed me. Our children will mirror how we handle things. Find and hold onto the small victories.

  3. You are in my prayers as I have traveled the CF journey to its final destination. I hate this disease, but together my daughter and I resolved that it would never beat us up fact the spiritual strength it gave us was the positive result. First I showed her, then she showed me. Our children will mirror how we handle things. Find and hold onto the small victories.

  4. I need to remember that phrase "please decide for me". Now I know why I have a hard time making decisions during hospitalizations, new antibiotics, any added changes, etc!

    I think I had mentioned this in the past, we get used to the "normal" CF stuff, daily treatments, and the usual medications and we kind of forget about CF, but when something like this happens, it takes a while before we "forget" in a way, and it all seems normal... sort of... it's weird, isn't it.

    That verse came alive for me, very much so. At the moment, I feel like I am constantly struggling with an almost teenager. Not refusal to do treatments, more like, "I'm gonna halfway do this and see if mom doesn't notice I'm doing it the lazy way". Of course as a mother, I feel guilty about it. I feel like I spend my days bouncing from one treatment to another with a rather large baby.

    Anyway, hope you can use the Schwans cards. I had absolutely no idea what to write in there, obviously lol.

  5. Beautiful words, Breck. You are such an inspiration and I am so glad you and Brian have your Couples Counselor. CF is definitely a family disease. I don't know how one copes without the Lord carrying them step by step during this journey. Jamie and I spent the day Friday at the ER in Baton Rouge with another bowel obstruction. His transplant doctor at Ochsner didn't want him admitted since we had appointments here in Pittsburgh at UPMC hope for a second lung transplant. He met with the GI doc here yesterday and he told him his body's biggest need was protein from foods that can be mashed with a fork----fish, chicken, potatoes. Any way, I am glad you and Brian can work on how you handle the curve balls CF throws at our boys.


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