Finding Another Reason for Tears, Slap Fights, and Airing of Grievances

      

 “WE NEED MORE POWER SCOTTY!”

“I’M GIVING IT ALL I’VE GOT!”

Or at least that is what we used to say previous to 2015 when we had a very generous stranger help us with that problem in our previous residence. We had all these perfect outlets in the area of our home we did treatments in and it was very sincerely a beautiful thing to a family in need of power for medical devices, like 6 of them at once. Then recently after 10 years in that home we moved into a different residence and left our dedicated medical equipment circuits behind.

     I was so happy with our new residence that I refused to admit there would be any issues with the electricity there. I thought, “well make this work. I can figure out a way to shuffle the machines around so that we can still get them done together.” But really it didn’t work. I was always worried I was either going to blow up one of their expensive machines or blow up the house. I was waiting to relive the scene from “Money Pit,” with Tom Hanks in the kitchen at any moment.

     After I accepted the reality of needing to get more electrical work done in our new place, we were able to soon have the assistance of our friend who is an electrician come to help us fix the outlets in our treatment/family/front room so that we could all be one big happy treatment family again. Still though all the cords and tubing with three SVN machines running (3 power cords, 3 tubing hoses) and three CPT machines (three power cords and six hoses) running twice a day and still being able to function in that room during non-treatment times was daunting. We didn’t think that it could be improved upon really though until one day this summer it did. It all began with a shocking statement by my husband.

The Chaotic Nonsense

The Beautiful Sense

     I say shocking because really it was. He said that he, “thinks I should get more of those IKEA rolling carts so all the kids have their own.” The shocking part was him suggesting a trip to IKEA. We had one IKEA rolling cart and were using it for only the SVN machines which complicated things because it forced the kids to all be close enough to that cart to reach their tubing. With my kids, forced closeness in proximity to siblings equals tears, slap fights, and excessive airing of grievances. So Frank helped me think more clearly and get us organized for the gauntlet of the 2017-2018 school year by helping my see past my mental block of treatment time being an unfixable tangle of cords and bodies to the kids having versatile range of motion during treatments. Instead of me setting it up for a group of people all trying to perform the same function simultaneously it is now very logically set up for three separate people doing their own treatments separately. Basically instead of nonsense we now have sense.

     Now I will take the time to give thunderous rounds of applause to my husband for not only seeing the plight and fixing it but doing all the dirty work (going to IKEA and putting the carts together) to achieve a huge assistance to my Air Traffic Control Tower problem each morning during treatments. Now surely the kids will be ingenious enough to find something else in the morning hours to cause the battles of tears, slap fights, and excessive airing of grievances because I'm sure will miss that excitement. A mother has to be realistic after all.

PS – I also want to thank the always diligent Swedish based designers of IKEA who help our home to be a better functioning place. In other words, IKEA, I love you.

    

They Shatter My Doubts

                It has been to date a summer filled with changes. Every day when I give Baby Ruby Forever her enzymes without having to get out applesauce to put them in I’m still surprised at her. I kept the applesauce available to use in case we needed it but after her first time of literally swallowing them without water, just swallowing them when I asked her to she hasn’t looked back. It is incredible to watch my kids do things easily that in my mind were going to be so so so difficult. My kids shatter my doubts. I am so excited to see them make progress towards independence with their care. Our situation is unique in that we have three levels of progression with Cystic Fibrosis.

They shatter my doubts, these guys right here.

                The first level, most advanced level, sits with our oldest brave newly double digit turned daughter. She is a courageous leader for her younger CF siblings, (whether she realizes it or not at this point). Six months ago she had her first complete sinus cleanout surgery plus adenoid removal surgery and since then her healing has brought with it huge benefits to her personal gauge of health. She knows now and can feel when her breathing and upper airways are clear and how to try to fix it when she is not. I’m so proud of her in gaining this skill, it was a challenging one to acquire (upper airway clearance) but she’s getting leaps and bounds better at it than ever before. To see her feel the physical difference in a blocked airway and then cringe to know how hard it is going to be to clear that and then to do the work to do it is really sensational. For instance she was laughing so hard today due to a hilarious friend at church (sorry primary teachers she may have been out of hand today) that she gave herself and amazing upper airway workout which left her feeling blocked. She came home from church and spent an hour fixing it, doing all the tricks of her trade (that she has learned for the past 10 years) to finally get it taken care of and with relief declare “I feel so much better now Mom, I really do.” We work with her to know what each pill does that she takes, and what each vial does that she inhales, and why its important to do all the stacks of extras that she does each day to feel healthy. She sets up her own pill box every week and follows a chart to make sure shes got them all. She is very close to being independent with her care and treatments with us praying, learning, watching, reminding, and encouraging from the sidelines. As she gets older well talk about insurance, where to get the cheapest over the counter supplies, etc – but thankfully we aren’t quite to that level yet (because I’m still figuring it out as well).

                Then we have our middle level of CF independence in our only g-tuber plus CF child, our own King of Brave, Orson. He is busy learning all about his g-tube. How to set up his feeds at night, how to hook and unhook himself from his machine, and how to keep his button site protected and safe. Along with having his one night every two weeks or so where he is very angry about having his protruding piece of plastic, he also has a sense of pride about his button. This comes of course from being the only one with one so he enjoys teaching his siblings about it (they love to help him hook and unhook and set it all up as well). He is also aware of what each swallowed and nebbed med does. All of this knowledge is being absorbed without him even being at the milestone of reading on his own yet which I always forget about him not being able to do that because he seems so mature and does so much for himself already in regards to care. He is very careful with his inhalers and I am grateful that he takes the instructions of the respiratory therapists so seriously and is so good at holding his breath and counting between puffs. He has always jumped at the opportunity of doing this on his own and progressing to the next level of self care. He is definitely a younger sibling who is racing to keep up with his older siblings and in this case, CF independence, it’s a really amazing blessing as his parent to see him trying so hard to be responsible in this very crucial part of his life.

                Whats been so wild about our now last level of CF independence in this our 2017 summer of change is watching our Baby Ruby Forever come out of the infantile CF stage where we are doing everything for her to watching her take those first steps to independence. She knows where her medicines are and can walk to carry them. She can hold her own neb cup. She enjoys counting to six in Spanish as we count breaths using her chamber. As I said before she is swallowing pills now. She has begun the always memorable journey of using the toilet and that is always a party for a CF human due to that darn pancreatic insufficiency and other CF nuances. My favorite part about the stage she has finally come into with CF care is that we have had more mornings that not this summer where all three kids are treatmenting at the same time! This is a motherhood miracle for me because its such a relief to have Pulmozyme and other important meds done first thing in the morning and not have to find time to work it in during the always changing day time schedule.

This is a blog post I wish I could go back in time and have myself read two years ago as I was holding my third little CF baby in my arms thinking, “how in the world will this ever work?” Two life changing years overflowing with blessings have happened to get us to these three separate levels of CF care.

My faith in my children's ability to handle the disease they were born with increases every day and it gives me a constant reassurance of God’s planning and presence in each of our lives. They are doing it baby! Wahoo!