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Challenge- Transferring Care

There is this kind of dance that every caregiver and person in need of care dances.  Sometimes it is a tango, others a cha-cha, and still others a beautiful waltz. There is such a balance of what the caregiver is able to give followed closely by the one in need and what they need and can do for themselves.  We have experienced this dance changing in the last several years.  Every time I think I have it figured out, the music changes.

Many will never be able to relate to our “care taking” lives.  The closest some will get is during the care it takes for a new born or young child.  At some point you do everything for them.  But as they grow that care transfers, and they begin to do things for themselves.. Medical transferring of care is an interesting one, and cystic fibrosis is particularly unusual it seems.

CF hits so many points of medical care.  I think the fact that it is not only chronic, meaning that it has been here for as long as we can remember and dreadfully will continue to get worse until the disease overtakes a person’s complete health and abilities. But, it also has an acute aspect to it as well.  When a person is sick, it requires so much more hands on and awareness to combat.  And the oddity comes in that in either of those situations there is a HIGH level of hands on work to be done.  Some of my friends have been able to relate to our lives in some ways because they have had to deal with a chronic disease (say Crohns, or diabetes, or arthritis) and from what I have witnessed, these are difficult diseases in which to deal.  They make the person feel awful, and never really go away.  So they understand the constantness of our lives in ways.  Then there are the friends who have experienced an acute disease.  Cancer, or an sudden infection, or even the flu are all acute (providing the person survives).  They come on sudden and may require an exorbitant amount of work/hospitalization, and the like afterwards.  But many times the “work” of it goes away at some point, (maybe not the fear, or concern because I have watched people get scans years later and still breathe a sigh of relieve when things still look good), but at some point they go into remission, or start to feel better from the “event”.  So they understand the crisis of our life a bit.  BUT~ CF has a good amount of both of those situations. Not to mention several disease wrapped up in it.  As a matter of fact, in a couple of weeks we will go for a blood glucose test to check for diabetes (they yearly test cfers for it starting at age 8 because cf destroys the pancreases ability to get insulin where it needs to go).  Last year Rachel’s numbers moved closer to the line of concern.  A test recently done showed her pancreas numbers signaling it is extremely low in function.  So we will be addressing that at the next appointment.

Cystic Fibrosis somehow contains a good dose of both the chronic and the acute aspects of health.  ALONG with tons of HANDS on maintenance WORK from the chronic!  And the acute still comes up way too often.  Sometimes I think it would be interesting to hear from other care givers where the disease requirement is much the same. I know there are ones that are worse, so I try to praise the Lord for what we “GET” to deal with often.   I see kids that can’t move or are in wheel chairs and that sounds horrible and comes with its own set of work and grief. My heart goes out to those parents.

This was part of the posture draining. We would invert her, and flip her side to side, and then finish with her head down, much in the same angle of this one to drain the lower lungs. We still do this when she is feeling particularly crummy and junk in her lungs. She says it helps relieve the congestion the most.

This was just a couple days after she had come home from the hospital. She was YELLOW. A sweet friend who was a nurse said some time later how worried she actually was when she came to visit because of her color and watching her work so hard to breathe. Her tummy was incredibly distended and she was definitely suffering from malabsorption and figuring out enzyme issues.

Hanging in the balance is the WHO does the work. When Rachel was little I did it all (and dad when he was not at work).  She required 4 breathing treatments and “poundings” to help clear the mucus from her lungs daily for about the first year of life.  Every single day around 8 am, 12 pm, 4 pm and 8 pm were the times we knew what we would be doing.  They each took about an hour between the “poundings” and the nebulizer treatments. Her first year was tough, and she was pretty sick.  But we did what we needed to do.  I strangely enjoyed the intense burn I felt in my arms for those 30 minute sessions of pounding 4 times a day as I knew I was doing the best I could for her.  I won’t lie, it hurt, but love pushed me onward.  I patted her little lungs so well that people thought I was abusing my child in public, only to see me smile and say, “I am literally beating the snot out of my kid”.  (Those from my MOPS group at church will remember me sitting in the back of the room with the rhythmic rat-a-tat-tat sounds with my little blue pounders as Rachel was flipped different directions including the trendelenburg position on my lap with her head down.)  But it was me that did it all.  I don’t say that with any trace of pridefulness, but rather with a sense of blessed duty. When we brought Rachel home from the hospital there was SO MUCH that came home from the NICU.  We had four large bags full of medical equipment (nebulizers supplies including ampules, masks, medication).  Not to mention two new foreign machines: a nebulizer compressor, and an electronic percussor. We were more than simply overwhelmed.  But, I will NEVER FORGET- the day we brought our sweet Rachel home from the hospital, a dear friend was burying their precious son who had been in the NICU nearly the same time Rachel had been there.  The Lord used that sweet boys life to encourage my mama’s heart that first year.  Time and time again on hard days!  I remember specifically telling the doctor on day 10 when he grimly told us of Rachel’s diagnosis, “If we get to take her home, we will take a hard road verses no road ANY DAY!”  Those words have echoed many days in my mind.  God knew.

This is what it takes for my girl daily to live and breathe while healthy. As much as we lament this pile of medication, we are equally so incredibly thankful for each and every thing represented here. From the blended food for the feeding tube, to the nebulizer ampules and tons of little enzymes that help her to absorb her food. All of it is a BLESSING!! 

The first week home, my amazing mama made me a spreadsheet for those first few weeks at home to check off all of the things that I needed to do each day because I was completely undone trying to remember it all (which is funny now because it was only half of what we do now).  However, it was awesome at getting me my “sea legs” for the journey ahead.  I learned the hospital numbers by heart the first month because there were so many things and questions and honestly because Rachel was really still quite sick.  When I look at pictures, her first month she was seriously so yellow because her liver had taken such a hard hit with the TPN used to feed her while so was critically ill and on ECMO.  BUT…we learned what we needed.  DID WHAT WAS REQUIRED.  Worked to control the chaos and struggle the best we could.  And frankly, got very proficient at it!  Still didn’t like it, but we did all that she needed.

We even made a game of treatment time. There were still times when she would cry because she wanted to be left alone, but… this girl of mine and her smile. It has been and continues to be so precious a gift.

Fast forward 13 years. As with any of our children, we want them to learn to be self sufficient. Clean up after themselves,  dress, clean and care for the beautiful bodies that they have been given. Learning to brush their teeth seems simple right?  But, we all know it takes some effort to train at times.  After all they only get one set of adult teeth, right? CF care is much like that…only a

MOUNTAIN

of tasks that come with it.  And the stakes are so much bigger than a cavity in your tooth if you just don’t feel like doing the task. You only get one set of lungs (although that kind of weirdly and morbidly made me chuckle as the truth is with all cfers they will likely either die with their badly disease lungs or with the gift of someone else’s transplanted lungs. The analogy of teeth is a poor one! Although it is one that most can understand.)

A friend who had dealt with medical issues recently spoke of the fog that comes with the mind of a caregiver.  Everything is filtered through it. The time, the risk to the health, the consequences of this and that if issues arise and don’t go the right way.  The things that are currently in my brain, would make a grown man cry most days.  I know every one of Rachel’s 18 medication that she takes (both the generic and pharmaceutical name), and what each of them does.  I often bring a list to other dr. appointments because when they ask what medications she is on, I write- “see list”.  I have five pharmacies phone contacts on my phone for her monthly refills, and am on a first name and sound of my voice with most of them.  I have a system in place for how to remember when to order medications and try like mad to not let them fall through the cracks (although after 13 years we still fail at this about 2-3 times a years).  I am fastidious about sterilizing her equipment and nebulizers and making sure we have enough of the durable medical supplies to make it through each month.  The list seriously goes on and on.  THERE IS SOOOOOOOOO MUCH!!!  And while I do not do it perfectly, I have found a lot of methods that help me to function with it.  BUT!

AND THIS IS A HUGE BUT….

I have been working over the last three or four years to let go of much of it.  To little by little train her to be able to do these things for herself.  I know that I want to and must let go of all of it at some point, and that is A GOOD THING.  But, here is where the dance takes place.  Somedays, it is easy to let her do it all.  And then there are the days that…I just need to take it over to get out of the house on time or to make the next thing happen.  That is the hard balance. I am an experienced marathoner and she is a stumbling new toddler in this sense.  My experience has to come alongside and help, but I have to let her walk on her own two feet.  The difficulty with this is….as I said in the beginning…IT IS SOOOOO MUCH WORK.  Not only the chronic side of things, but the many, many times the acute aspect kicks our tail.

Years ago I started by having her go to the check in counter to give her information at the clinic, other appointments, the lab for blood draws, x-rays, and other procedures.  I stand back and she confidently walks up to them, tells them her name, birthday and who she is there to see.  It is a small thing, but I feel like there is ownership in it.  We also started having her regularly wash and sterilize her nebulizers (THAT IS A PAIN FOR ME…you think dishes are bad, at least there might be a paper plate somewhere.  It stinks to be ready to do your treatment and have no clean nebulizers and have to wash and then wait for the sterilizer.) She doesn’t do this every time, but usually about 2-4 times a week.  We also have her fill her weekly medication (after a friend of mine that has three kiddos with cf said that all of hers do.  Although I think they may have a few fewer meds than Rachel does.  It was still a nice encouragement to Rachel that others do what she must).  I have a “cheat” sheet that I keep in her med drawer.  I use it.  Now she uses it.  The other day she asked in the most precious voice. “Mom, when I am an adult and have to do all of this, will you come help me sometimes?”  I responded with, “If you need my help, I will always be there for you, but I am pretty sure that you will figure it all out.  You are smart, and brave, and clever.  You won’t need my help!”  Oh, my sweet girl, I can only imagine the burden that resides in your heart knowing the forever of this disease. It is a heavy burden.  SO VERY HEAVY.

Here are the words I wrote the other day in my Facebook post that speaks of the gravity of this dance that Rachel and I share.

“Just did an hour long tearful conversation with Rachel (seems there are more and more of them these days). But man the emotions that come with cf are tough, and SO HEAVY!. Between feeding tube feeds, medicines, sinus crud now, g-button issues that never seem to go away, and are painful in the process (so she tries to ignore and hide them from me because she knows I won’t), friends and hanging out being different, grumpy with siblings because their lives look different, amd hating every part of cf care, the list goes on and on. We just sat and cried. The weight upon my girl is so very non ending somedays. And the stakes are extremely high with non compliance of her cf care. But she just wants a break. A day without dealing with cf. I desperately wish I could give that to my girl. One day! Just one. One where hours weren’t spent chasing care to keep this awful disease from overtaking her precious life. Sometimes I can’t even fathom what goes through her mind? 😔 I get glimpses and they are gut wrenching. Tonight, the eve of the eve before her thirteen birthday, my heart breaks. To look her in her tear stained eyes and tears still rolling easily down her sun kissed cheeks and try to affirm her weariness but gently remind her that she may not lay her weapons down because the battle before her is fierce and unrelenting. And that it will take every ounce of her stubborn will to forge on…is, overwhelming tonight. Praying humbly
to Jesus for wisdom!
We proceeded to cope the only way I know….to cry together, hold her, pray and sing about heaven and the faithfulness of Jesus. Hard, raw emotional stuff. I so Wish I could carry and take all of this enormous burden for her! She is weary in spirit. So I am I. But, my God is able! “They that wait upon the Lord will renew their strength. They will mount up with wings like eagles. They will run and not grow weary, they will walk and not faint. Teach me Lord to wait on you!” Prayer of my heat tonight. Sorry, not sorry for the real post. It’s been full of ”awareness” around here lately. And I write to grieve and process. I am praying that Rachel will find a source to processing her emotions too. Praying always and fervently!

The thing that is so hard in all of cf care is the desire to “want to do it”.  It is hard to climb a mountain on any given day.  The thought of climbing every day is truly unimaginable. And at 13, painting her nails, or hanging out with a friend are on the forefront of her mind.  My natural, knee jerk reaction is frustration because I KNOW the ramification of ignoring the immediate.  I know cf mama friends at this moment who are holding their teen kids’ hands while they cherish their last days. The words, “There is nothing more they can do for them” are beyond horrifying to me. I also know many people  currently on the transplant list with cf.  And the loads of others that have transplanted, or worse those that have passed away. CRUEL and crushing to know this is the reality of CF.  While I feel desperate to do it all so that Rachel has the best chance at a longer, better life…the TRANSFER of care must continue.  I am not the one that can carry that full load of getting it done anymore.  I miss those days.  I love the fact and idea that Rachel has yet to miss a single morning or night treatment in her 13 years of being on this earth (she didn’t do treatments officially until she was diagnosed. The other day I was trying to explain the weight of this with something little one of my other kids had to do  that they did not want to do.  I said can you imagine that every morning we had to do “X” before we left the house.  Even if you wanted to do it in the afternoon, or worse yet, not at all.  But 365 days a year+365 days a year+365 days a year, +365 days a year, +365 days a year. Their eyes got big.  I finally stopped and said…that is only 5 years that I stated.  I really would have to keep saying this for another 8 years.  THAT’s 4745 days straight!!!  HOW CRAZY IS THAT!!! The kid understood a tiny bit.  However, I don’t think anyone that doesn’t have cf or who hasn’t tried to care for someone with it, can ever fully understand the burden of this weight.  And as a caregiver, and more importantly, the lover of my girl, I wish I could just do it all.  But, alas, I have to turn it over.  Not only to Rachel, but more importantly, to God.  He alone is able to carry the entirety of this burden.

Rachel recently asked me to take a picture of all of her daily meds. I love that she is learning and wanting to be her own advocate. She was asked to go to a sleep over the other day, and she showed the girl this picture. And said, I think I can come, I just have a bit of stuff to figure out before I come. Her friends’ face was awestruck. Rachel looks so healthy, but it takes the mountain of stuff to keep her going.

By God’s grace we will figure out how to transferred the load of the burden of CF.  Both the chronic aspect of it, as well as the many acute situations that arise. I know that my God is faithful and that He will give wisdom where we need to have it.  Even this week, days after this post, ideas are coming to my mind on how to help encourage and inspire my girl.  We are making check off lists for her (she is like her mama) to help with the new things added. Another CF mama of three of her four said she pays her kids to be complaint.  Not a bad idea.  I thought about it the other day and started out telling Rachel that I would pay her a dollar for each thing she had to do each day of cf care.  WELP, I had to rethink that one really quick.  $1 for treatment, $1 for medications taken, $1 for feeding tube site cared for, $1 for nose rinse, $1 for washing and caring for nebulizers…and it was continuing to build. =0 She would be VERY rich if we did that.  So… we are still working out a plan for that one, but we will initiate something in the weeks ahead.  Eventually we want her to understand that the richness of compliance is health…only that is confounding in that health may and will go down despite compliance.  So difficult to figure out.  But, maybe compliance will be part of her allowance (that she currently doesn’t get because we think our kids should help with chores around the house since they live in it. =) Hehe.  And there are only a few “paid” chores. BUT…cf care, for awhile, might just be part of her paid chore list).  Rachel, Dad, and I will figure this out.  We are so incredibly grateful for the many, many amazing and wonderful families and people with cf that encourage our hearts.  They know this balance, and this dance which I speak of.  And we are so inspired to hear them Speak truth and wisdom into and over my girl and family…knowing the struggles.

I am going to leave you with this~ I heard a line from a CF Warrior recently.  His wife often looks at him when he is gasping for breath and asks, “Are you okay?”  She knows he is struggling to actually breathe (as he has knocked on deaths door many times, completed a transplant and currently is struggling with rejection and breath in general) but she said, there is something about hearing his voice that gives her comfort.  He hates that she asks him this question every time, even though he knows it scares her (the “dance”).  So in his best effort, he says through gasping breaths, “I will be”.  I LOVE THAT.  It is a phrase filled with HOPE!!  PAINFUL at times, but full of FUTURE HOPE.

Days are hard, and many of them we often struggle to catch our breath.  Thankfully, the transfer of care is part of our process, but it so much more intense that I could have ever imagined.  I think back to 13 years ago when we brought that tiny little, sweet girl home…this is gratefully part of the “hard road”.  And while we might not be totally okay at the moment, by God’s grace,

WE WILL BE!!!

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