We came home on Saturday and spent Monday night in the ER because of mixing up timing on a medication we give Mallorie. She was fine, and cleared to go home. Tuesday, we got to see Dr. B, who spent some time listening to the updates and getting to know the changes in Mallorie. She also was able to change out the medications a bit, so we have a little less to keep track of. Wednesday morning, back to Dr. B again. Mallorie had run a fever all night that didn't really even seem to respond to tylenol or motrin, and by morning she was struggling with breathing.
Dr. B asked us, "Did a breathing treatment help?" Uh, no, because we didn't even think. We just saw breathing problems and called, and they let us come in right away. So she had Mal get a couple of breathing treatments right there, which did help the breathing, and sent us for labwork and a chest x-ray. Later we got a call that the x-ray showed pneumonia and an area possibly not fully filling with air, so she is on an antibiotic and more breathing treatments and chest percussions to help loosen and move things out of the lungs. By Wednesday, she was noticeably better.
If you have a child, you probably are grateful for a good pediatrician or other healthcare professional whose opinions you trust. But having Mallorie has made me need another word that's bigger than grateful. Dr. B is beyond exceptional, and to make it even better, each of the pediatricians in the group she is part of is also exceptional, and we can (and have) trust all of them with our children's lives. One of the things that adds to the safety of their care of children is that all of them seem to be very good at taking histories. To understand what is currently going on with a child, and to come up with good plans, requires actually listening to what the family has to say, and what they "think" is going on. The family may or may not be correct, but I've heard Dr. B say many times in the past, something along the lines of "parents know best."
To fully appreciate this, you should understand that Dr. B has, well, sort of a strong personality and also strong opinions. She has been known to stand with her hands on her hips while loudly telling me that I'm practicing "voodoo" on my baby (by wanting to play with the immunization schedule.) But she somehow manages to combine her passion about doing the very best for "her kids" with prayer (to discern whether it might be appropriate to allow parent input to override her strong opinions) and with a sensitivity to the rights of parents to just have choices.
Like going along with my desire to keep experimenting with natural methods of keeping Mallorie's bowels functioning well .... provided that I have (and will actually use) a good back-up plan, so Mallorie doesn't suffer if my magnesium + vitamin C + cod liver oil formula doesn't work as well as her Lactulose.
When she asked how Mal's bowel movements were going on Monday, and said, "She's on only breastmilk right now, right?" When I said good, but explained that they smell like chicken poop, probably because of the dehydrated greens we started adding to the milk to get more nutrition to her (they contain grasses), she turned to Tracy, Mal's nurse/mommy, and said, "What are we going to do with her?" I know that SHE wouldn't prescribe dehydrated greens for anyone, but when she rolls her eyes and smiles, I know that along with the teasing there is a good dose of respect that she has for parents, that helps her remember that parents should be allowed to make choices, even silly ones, for their much-loved babies.
I marvel a lot at the wisdom God had in changing my work plans so that I was able to work around this girl enough to learn who she was, and to grow a friendship. I believe with all my heart that she is part of God's plan for Mallorie and for us. And she is one of the strong professional women I know whose lives and kids remind me that it's ok to work outside the home, if that's what God has called you to do, and that He will bless your children because of your obedience to that calling. She is that kind of mommy who proudly shows you the Spanish dancer dress she sewed for her daughter's school production, who goes camping out with her daughter's Daisy troop (even though she hates camping), and takes time off work to proudly bring her son to scholastic competitions, and beams when she jokes that he is the future Pope. And does weekend long girl-time expeditions to do scrapbooking. And she also happens to be a physician who is extremely safe and comfortable managing a little girl who right now is a tad bit complicated. I told her once, years ago, that from knowing her and watching her work at the hospital, I absolutely believed she was born to be a pediatrician. In case she ever had doubts. :) Which I bet she does not!
There is no way to honor her sufficiently for the gift she is in our lives, and goofy me, I brought my camera along in my purse both Tuesday AND Wednesday ... and forgot to even pull it out. I should have asked Tracy to remember, because she remembers everything!
Mallorie seems a tiny bit more alert at times without being agitated to go along with it. In fact, she sometimes seems to be able to tolerate a little bit more time between doses of the medication we give for her agitation. Not sure how much her frequent need for that med a few days ago had to do with her getting sick, but definitely she has been a little easier to predict in the past couple of days, and has some periods when she is a little more alert that are not also combined with tenseness and agitation.
Not much else to update. We are working on ways to simplify her routines to help lessen the chance of us making medication mistakes when our tiredness gets combined with Mallorie's health changes.
The older girls are gone for the weekend to a dance convention. This is something that John has always loved being a part of, but this year, as last year, they have to go with friends. But we are there with them in spirit, and hope someone sends us a picture or 2?? And we have a good sunny weekend to spend with the boys.
The Trisomy 18 Connection
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