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.

Saturday, September 24, 2016

Please Help Me To Smell the Bacon and Not to Eat It


What do you get when you put a one year old, a 4 year old, and a 7 year old in a 10x10 room for three hours with a toxic medical waste trashcan, an adjustable medical exam table equipped with stirrups, and a spiny doctors stool?

Easy it’s a CF Clinic visit with the Adams family!

Man I wish the punch line to that joke was funnier. I will have to keep thinking on a better closer for that one. I should probably work something into the punch line about the stirrups and the spiny doctors stool because the kids each feel the need to play with these at some point during the three hours in the room and each at the most awkward time possible.

I’ll be honest the appointments are mayhem, but also miraculous in many ways and we have an amazing support team of medical professionals who are sincere and capable.

Ruby was sounding good and growing well. She has a nice “curve” to her growth chart. She got lots of compliments on being Maelee’s twin.

We walked away with some weight loss for Orson since last visit. Not unexpected from the three week long battle with the stomach flu we had along with the rest of the state of Arizona in September. Stomach flu isn’t fun for anyone of course, but especially for someone who does enteral feeding. Poor guy, but he is on the upswing so away we go back to “two cans a night” and as much half and half as we can convince him to drink with his teeny tiny portioned meals and snacks (and yes we tried heavy whipping cream but that didn’t work).

Maelee was confirmed at this appointment with having asthma along with CF which isn’t uncommon and just requires some increase of diligence and awareness and medication changes. The thumbs down news is that she is on hospital watch again because she had poor scores on her lung function test along with having lungs that are “wheezy and coarse” sounding. The double thumbs down news is that her weight is also slightly down. It’s all interrelated with the lung function because if it takes more energy to breath more calories are burned just by breathing so your weight goes down and losing weight is bad news for lung function. It’s a relentless cycle of weight loss and lung function.  

She was prescribed a new calorie goal of 2,700 calories a day which seems like a fun thing to do, but it can get tedious and stressful with everyone is bothering you to eat and creates a unique kind of pressure opposite to what the world around you is pressuring you to do. Then there is the pressure in her mind of the potential of a IV antibiotic hospital stay. Which hasn’t happened to her yet but seems inevitable since this isn’t the first time she has had low lung function and been on hospital watch in the past year.

So our goal is to beef her up and clean her lungs out over the next month and then get re-tested to see how she does and if she will be admitted for the “CF clean out” along with IV antibiotics.

What am I doing to help her? We go on more walks and bike rides to get her lungs pumping since ironically while it burns calories its also the best way to have healthy lungs, exercise I mean. I am also taking breakfast to a whole new level and trying to be even more involved (what I really mean is I’m super bossy) with after school snacks and dinners packed with a caloric punch. While my favorite job as a mother is the Chief Encouraging Officer I do get a little tired of smelling all the bacon every morning and resisting the urge to also meet the 2,700 calorie goal right along with her (blast it all to the early holiday shipment of Danish Butter Cookies at Costco). And boy if I think I am at the grocery store and Costco a lot now I just think back to the last handful of Mom’s of teens with CF I met who have kids that are prescribed 10,000 calories a day to maintain weight. Oh yes that’s right the bacon party has only just begun.








Just a little snap shot of a brain storming grocery trip the day after our clinic visit. Getting ingredients for high calorie desserts and also some other stuff to hopefully healthily get calories as much as possible. Thank heavens that everyone in our house can have dairy. We would literally be up against a brick wall without the calories the kids get from dairy!!!!!!
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