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, August 1, 2015

Holland Was Right, but it's a Tough Habit to Break

There is a conference talk by Elder Holland that goes into detail about how parents should never compare their children. It does neither the parent or the child any good. 

 Frank and I still have a hard time believing it when our other CF kids have different physical trials than our first,Maelee, did. It seems clear to us now how very blessed Maelee was in her infant and toddler years with her disease. 

 So our pulmonologyst probably gets sick of us referencing our first experience  with "the p word" (pseudomonas). Maelee got a throat swab that cultured  for the P word when  she was 10 months old. She was unsymptomatic. No bugger nose, no cough, fever, etc. We completed some rounds of the 28 day antibiotic, did a bronchoscopy to make sure it was gone and moved on. She has cultured for it a handful of times since then (always when we have a new baby in the house) but we run the antibiotic and move forward - at home.

 On July 14th all our CF kids had a clinic visit and got throat swabs done. Maelee came back with the P word, Orson's came back clean, and Ruby came back with achromabactor. At the time of the results of these tests Ruby was unsymptomatic. Maelee started her new standard Tobi Podhaler regemin and we moved on.

 Then a small cough for Ruby began to grow into a spasm puke inducing scary cough for Ruby. I took her in 3 times to be listened to by the pediatrician last week which led to a chest x ray which led to the hospital in attempt to irradicate the bacteria.


 So after finding out what "deep suction" looks like on a newborn, and having a nasal swab, throat swab, another chest x ray, and blood work done we sit and wait for the last test to come back. We need to know if the P word is the reason Ruby is scary-red faced-puke coughing OR if it is the achromabactor. All other standard respiratory conditions have come back negative so it is being presumed that a gnarly CF bacteria is making a home in Ruby at 36 days old. The treatment for that will be 7 days of IV antibiotics in the hospital.

 So in the mean time since the hospital is already busy and its the weekend, we wait. The incredible thing is Ruby has had no fever, remains hungry, and all is well besides a lingering cough. 

 So once again the words of a conference talk (The Tongue of Angels) are proven valuable information to log in my brain. "Try not to  compare your children, even if you think you are skillful at it."
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