I realize we are just getting started helping our children and family as a whole unit live and succeed with chronic disease. We have definitely had more experiences in the hospital and at the doctors than an average family, but know there are other families that absolutely have had more experience than us. Watching each of our infants experience at some point an extended hospitalization left us feeling confused, afraid, lost, guilty, and often very angry. In the beginning I remember a toe to toe nose to nose discussion with one pulmonologist on call one day in the hospital with my 7 month old son (who heart breakingingly screamed bloody murder through every IV). The pulmonologist told me to “get used to this mom, you have to get used to this, you have children with a chronic disease you need to expect weeks in the hospital.” I was furious. I told her I refused to accept the hospital as normal and I refused to quit asking to go home as soon as we could as often as I could. She never came back to our room, and I never saw her again. She asked another pulmonologist to handle us (lets be honest me). I think I would like to let her know now that I apologize and I understand. I’m not happy about it, and it still feel angry about it a lot of the time but I understand that being intermittently hospitalized is part of my children’s life. We also understand that our emotions are second to helping our kids do their best to prevail with positivity and hope. Our attitude will be mirrored and magnified in them especially if it’s a negative one.

Sunday, January 22, 2017

Scary Job Is Confidence Aquired

I have enjoyed thinking about and recording a tiny bit of the Big Deal CF Blessings our family received in 2016. I was going to write that this will be my last post referencing our Big Deal CF Blessings in 2016, but I realize now that all of what I write draws on some piece of the past so I won’t say it’s the last. Instead I will stop numbering them and just happily relate our Big Deal CF Blessings for as long as the mood strikes me.  
Big Deal CF Blessings : Nurse Debbie’s Diagram
There are many times in my life when a blessings snowballs and keeps on giving. Maybe the snowball effect doesn’t happen at first, but some small lesson is learned that benefits me over and over again throughout my life and challenges. This happened during our home IV adventure in November of 2016.
When our pulmonologist gave us the glimmer of hope that our oldest daughters hospital stay could be shortened if we would do home IV’s last year we were so happy. Then when it really happened and the nurses at the hospital did the noon IV and said, “OK the next IV is due at 8pm and you guys will do it at home,” I started sweating. I began to physically feel ill. Surely I could convince the home nurse to just come back and do it for me. She really shouldn’t trust me with this job…..I cut myself all the time in the kitchen! I often screw the water bottle lids on crooked and they leak! Once and a while I can’t outsmart a Capri Sun! Don’t let me do this on my own! I didn’t want to hurt my kid!  
Then at 8pm that night we met Nurse Debbie, a very fantastic IV home nurse. She was a perfect match of personality with my family and didn’t mind the circus surrounding her as she tried to teach my husband and I how to administer home IV’s. During this well-rehearsed (on her part) teaching session she started by drawing us a diagram on paper. She drew out with various shapes representing the different IV meds and process. She explained beautifully how to visually go into the process with all the meds and supplies and if you worked simply from left to right following the diagram you would be successful in administering the IV.
The nurse explained that the next IV would be due at 4am and we would do it alone. She said we could call her if we needed her, but that she was confident in us and our ability to do it (but maybe she didn’t want us calling at 4am, ha, ha, hopefully she DID think we were competent and she wasn’t just exhausted). Before she left she again re-iterated that she KNEW we could do it and figuratively made us get down on one knee and knighted us with her nurse-to-parent-sword-of-confidence.
I was so scared for the first IV on our own. Shaking. Anxiety ridden. In wacked out Mom mode I walked into the girls bedroom with my phone flashlight blaring at 4am, not even thinking about the sleeping 15 month old in the crib next to my oldest daughter. So poor baby Ruby got woken up that first IV morning at 4am and stood up in her crib and watched her Dad and I shakily do the first IV. The great news is though that this scary experience increased our confidence.
Nurse Debbie’s diagram teaching method worked perfectly for my husband and I and it allowed us to double check the diagram when we were on our own to clarify and assure ourselves we had it right. My husband and I began to feel like experts with this IV process. Every morning at 4am an IV was due to be administered so we would go in to Maelee’s bedroom together with all the supplies and one of us would administer the IV and the other would take the garbage (we make a lot of medical garbage at our house) and hand back the many necessary alcohol swabs to keep the site clean during the job. We both could do either job (assisting or administering) equally well and it was a unique bonding experience as husband and wife in working together at 4am. I even had the opportunity to really flex my confidence muscles and do the IV a few 4am’s alone when my husband was out of town.
Debbie’s diagram though that first night stuck with me. It became very apparent that I learn best visually. One day Heavenly Father popped the glorious idea into my head to make a morning med diagram for myself to help me make sure everyone gets all the nitty gritty details of their morning meds. I copied Debbie’s method and drew shapes representing what all needed laid out each morning for each kid. I chose to do one diagram instead of three knowing keeping track of one diagram would be easier for me than three separate. This has become a life saver for me. Before the diagram I would write down their morning meds on paper and follow that, but inevitably loose the paper leaving me just trying to remember from memory. Never fail at some point in the day I would either 100% realize I had forgotten something, or 50% wonder if I had or not. Now I just first thing fill up all the shapes on the diagram and then start passing them out! It’s great and works so well for us!
Even more of a bonus it’s going to allow me to train each of the older kids on filling up the Morning Med’s Diagram so that they are all proficient at it and can help each other, me, and themselves. A BIG step to CF self-sufficiency! Hooray!
And it’s all thanks to the nifty Nurse Debbie and her diagram of IV wonder. The blessing of meeting her and learning visually from her IV diagram is the beginning of a huge blessing snowball.
P.S. – On a specific side note for any CF family readers I also in 2016 found this very handy lazy susan of sorts from Hobby Lobby. Its metal (cleanable), and spins (fun), and SO cute! Now all the meds that I keep on the counter because I access them so much are neatly off the actual counter and easy to find. I love and appreciate this CF tool. This along with hanging our nebs to try on the side of our cabinet with shower caddies has saved my kitchen counters from being always full of medical clutter (necessary of course but clutter non the less).

No comments:

Post a Comment