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.

Wednesday, October 19, 2016

A Tribute to Butter Cookies


I got a phone call from my kids pulmonologist a couple of weeks ago. When I see it’s a phone number from the hospital after we’ve had a clinic visit and I’m waiting for test results my senses sharpen and I get tense swiping to answer the call. Then when it’s actually one of our doctors on the other end of the line and not a nurse or other office staff delivering the news I know I need to find a chair and sit down. It’s always worse when the doctor calls in person. I appreciate them calling in person so much and actually feel honored (a little star struck really because I have loved and respected all of our pulmonologists to date) that they would take that time to make the call themselves, but I’ve learned to brace myself.

Anyway it turns out that Orson and Ruby both turned up with pseudomonas. It’s not the first time for Orson, but it is for Ruby and its not good news for either. Pseudomonas is a bacteria that tends to colonize in CF lungs and become resistant to treatments causing big damage issues long and short term. What it means for now is two courses of antibiotics for both kids. One is a semi-typical oral antibiotic and the other is a beastly thing that takes 30 – 35 minutes a day and lasts for 28 days. I am head to toe grateful for the beastly 28 day antibiotic but I allowed the news of it to clothesline me emotionally, then I let the reality of it smash my confidence.

It’s like I was a successful manager of a business one day, knowing when and how to successfully administer all treatments and meds throughout the day completing my 78 (exaggerating on the number or guessing at least) step dance routine with a graceful bow at the end of the day. Then with the news and the new blend of meds and treatment additions its like I was back to my first day on the job my manager title ripped from my name badge and I was still expected to do the 78 steps but add in 15 more intermittently and my trainer was out sick so I was on my own. Good luck figuring out that analogy, but the point of it was I felt like a failure.

So what did I do? Take it day by day. Pray. Make time for self contemplation and encouraging. I soon saw again the truth in my conversation I had with a veteran CF mom 9 years ago that “the treatments seem like a lot but soon they become normal and you don’t even think about it.” Really right now the tricky part is getting all of Ruby’s stuff done. The older two are extremely compliant and capable to doing their treatments with little assistance from me. I change meds out in their nebulizer cups but they can sit through treatments on their own.

Ruby however since she is at the adorable age of one does not sit for anything, especially for 30 minutes of inhaled medication and vests twice a day. It’s just one of those things where at this point in her life we go to battle during treatments. Its similar to a three stooges episode. I am Larry and she is Curly. I go to grab her and get her 4 inhaled puffs in from her chamber and she somehow wrestles away from me between each one. Making a 4 minute process into a 10. Then while I am setting up her vest and gathering the medications for that she is dismantling the vest and hiding the fish mask to her nebulizer cup. When I finally time the treatments right (on a good day) with a sleepy time for her and gather up all the meds she decides that she can pull the top piece out of her nebulizer cup making it non-functioning 20 times during her treatments. She watches me (although surely she is less diabolical than it seems to me during our twice a day battle) for any chance to flip the hoses off her vest so that I have to readjust my fragile balanced hold on her body, the neb cup filled with expensive lifesaving liquid easily spilled mandatory medicine to now bend over and retrieve the popped vest hose and again attach it.

The bright side of all of it is that it will pass. Soon she will be doing treatments like a boss with her other siblings all lined up in a row on the couch. But for now until it does pass and we are still acting out a Three Stooges episode twice a day I have (along with prayer and spiritual motivation) Danish butter cookies. I am aware that my love for them is unhealthy. I like to think that the calories burned during my core and stress work out balancing the baby and the medicine and the vest shaking us through the whole thing makes up for the calories consumed in the cookies. I’m no nutritionist, but I will tell you that these Costco Kelsen Danish Butter Cookies have some sort of special ingredient on my ability to face the day and make it happen. I think the ingredient is butter, or maybe its sugar. Either way thank you Danish Butter Cookies, each and every one of you!
My tribute to Danish Butter Cookies.

So CUTE! So not into medicine marathons! My neither sister, me neither!


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