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.

Tuesday, November 21, 2017

Foul Nights Wake Me Up When December Comes



So our theory with Orson’s g-tube feeds is we want him to be able to sleep without it for as much time as possible at night and for that reason we run at a feed rate which will end his feed at about 1:30am so we can unhook him, help him get to the toilet and then go back to bed without a tether.  It’s totally normal and we all basically sleep walk through the process. Lately though things have gotten a little crazy. It started a few weeks ago. I woke up to the alarm on his pump screaming at me through the monitor next to my bed and immediately I smell it. Shockingly foul but I’m so tired and in sleep walk mode so I remember actually thinking, “whatever it is I’ll find it in the morning and clean it up.” But as all things foul in a household full of kids and a dog you can’t put off the funk, it always always finds you. As I walked back into my bedroom from finishing up with my g-tube buddy, using my cell phone light I feel pulled one step farther from where I need to go to land in my bed. My stutter step tracks the cell phone flashlight onto a medium sized pile of poop next to my bed. Fantastic. So that is the beginning of the foul things in the night at our house and also the night I was pushed by an angel, because heaven knows stepping in a pile of my sweet-little-old-lady-cocker-spaniel’s poop on the carpet at 2am would have sent me into a fit of rage.

More seriously and recently my g-tube buddy has experienced many foul things himself at night. Mainly throwing up and pooping multiple times a night. It all started the first weekend in November when I was scheduled to go out of town with my oldest daughter to her school science camp. It really hasn’t gotten a whole lot better since then besides the vomiting has stopped and I’ve become  a tyrant with his digestive supplement routine to try to alleviate some of his pain and discomfort. But this normally great sleeper who can and did two pouches of formula a night like a champion is down to one and some change. In tandem with this night time awfulness like a woman who lost her sense of reason I began to watch the second season of a very intense show with my husband at night before I went to bed. So now even when I’m expecting it a panicked six year old sneaking up on me and whisper screaming “MOM” into my face multiple times a night is extremely unsettling. Were all walking on a very frayed rope these days. I’m thankful that at least the second season ended in a very satisfying way, except for Bob. Poor Bob.

But the silver lining’s are plentiful. His stomach x-ray shows no blockage like last year. Which leads us to believe that his pain and discomfort and cramping and night time trouble are from the puss and mucus dripping into his stomach from his extreme sinusitis combined with his nasal polyps all working together to sabotage our son’s health and ability to breath clearly. Also on a thorough clinic visit last week he literally blew everyone away with his PFT (pulmonary function test) scores which were as high as 123. An unheard of personal best for him. So while he is devastatingly loosing weight right now, can’t breathe through his nose, has crazy chapped lips, trouble in the bathroom all times of day and especially at night, isn’t getting enough sleep…..even with all of this physical chaos his lungs are strong. And this my CF team assured me is a huge and definitely the biggest goal of a CF body is to keep those lungs healthy.


So now we wait for adenoid/tonsil/sinus scrape/bronch surgery in December with a hope of finding some big time relief for him after he heals up from it. We are really working so hard to cheer for our boy and keep him intake-ing as much caloric fuel as possible as we wait out surgery day. When Heavenly Father created Orson he made a strong, kind, and especially joyful soul he’s got so much going for him just not nose breathing right now. Thanks be to Heavenly Father who gives us the silver linings amidst the rain. How very miserable it would be without them.

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