Oh my gosh. I have seriously got to be better about updating this thing!
So – since we got out of the hospital, Kendall has been steadily moving onward and upward. Thank God! We had a pretty “iffy” first week at home, basically because her body had been without major nutrition for over a week at that point, and that just doesn’t work real well for kids of ANY level of health, but especially for kiddo’s like Kendall! Her lab values all reflected a very depleted little girl, and that is definitely what we had on our hands for those first few days at home. I admit that at one point, I was just this side of “scared” for her. Scared that any and all absorption had definitely tanked (we know she doesn’t have GREAT absorption of nutrients through her gut, but she still has SOME), that we had caused even greater damage by letting her go without protein/fats for too long (she was getting mainly carbs her entire hospital stay, in the form of mass amounts of sugar water in her IV), that something BAD was happening. I work really hard usually to keep my mind out of that bad place, and instead focus on everything GOOD she is doing. But one day last week when everyone had commented on how pale/weak/bad she looked, it was hard to shove those feelings inside.
Eventually she DID start making that turn back to good though, and I am happy to report that this week has been much better overall! We were able to make HUGE progress while in the hospital with regard to a better plan for getting Kendall’s gut working again, and that in itself is a relief. The hope now is that she is OFF of TPN by her birthday (about three months), and onto a better formula for her. The problem is that she is still on an infant formula that is elemental (all the way broken down so her gut doesn’t have to do too much work), but obviously, the makeup of an infant formula isn’t enough to sustain a growing child. Infant formulas are calculated to be roughly 20kcal/ounce. Toddler (and up) formulas are calculated to be 30kCal/oz. It seems like a simple enough equation, and yet somewhere in the middle of that kCal crap, Kendall’s stomach revolts. We have never, in spite of our best efforts at ignoring symptoms and pushing her through crampy doubled-over retchfests, been able to get her to truly tolerate more than a 22kCal/oz concentration. So we have been stuck with an infant formula that has thus far mostly met her nutritional needs. Especially when you throw in the random lick of donut frosting, handful of Goldfish crackers, and couple of Saltines. She’s been ok. (Negating all the goodness of the TPN at actually keeping her ALIVE – the nutrition into her gut has been GREAT at protecting her liver and keeping things mostly moving “forward”. Kind of.)
So our days are spent trying to weigh out if her symptoms/pain level that day are manageable enough that we might be able to bump her rate forward by 1cc and hour that week, and continue to challenge the concentration of calories so that we can eventually switch her to the more appropriate toddler formula. Mostly, she’s been doing great. If you are willing to believe that the chubby face is from nutrition (good) and NOT from third spacing her fluids (bad), and if you only see her for the 1 hour of frantic activity she has when we are out and about anywhere, you might even think she is doing SPECTACULAR. And indeed, she really is. I’m not even going to be superstitious about it, I’ll say it out loud. She is doing great right now. We are making SOME forward progress, however painstakingly slow it feels like it is going. We are actually getting more words out of her and even got a spontaneous 3-word sentence out of her yesterday. Wanna know what it was?
“Chill OUT, Kaylen”. Except it sounds more like “shee-oo ottt La-La”. But there it was, yesterday when we went to get her out of bed and Kaylen (aka La-La) was running around like a banshee. Apparently she picked up this little gem from me, seeing as I probably say it a good 39 times a day. Oh my kids. They drive me absolutely INSANE some days, but God love ‘em…they keep me laughing.
She still gives us scares now and then. Last Friday for instance, when her nurse and I are trying to keep each other calm by not freaking out over the attempts at puking and nearly catatonic state Kendall seemed to be in while we ran out for a few groceries and to Ikea (we had taken the babies with us so Ben could rest some more). Checking temps and HR and draining a tummy are somewhat challenging in the stroller in the middle of the Bjellkat and Dorsdung bedroom displays. I just about needed a paper bag (Fjellsta, aisle 8) to hyperventilate into because I could just SEE this turning into another @#(%*) line infection for her. But we hung up her bag of extra IV fluids, gave her some more meds, put her to bed for a few hours, and breathed a sigh of relief when she seemed much better after that nap. She is back to taking 2 naps a day more days than not, even though the 2nd one is often only around an hour. But in between those times, she is looking great. So we will take it!
She had her evaluation for the special needs preschool (where kids who are in Early Intervention go once they age out of the system on their 3rd birthday). Of course in some areas she was “within normal limits”, which tends to go up and down depending on the kind of day she is having, and in others she was “referred”, meaning they need to evaluate her further in order to make educational recommendations. It was the usual mess of emotions that come from hearing your child has delays. But one bright moment, our evaluator told me “Kendall actually seems ADVANCED cognitively, its like she just can’t get that message out to her arms and legs to do what her brain wants her to do!” Puff my heart up with pride and hand me a brick. Pride that i think for the first time EVER Kendall was “advanced” in a good way, brick so I can bang my head against it cause I have told her doctors this for YEARS. Actually 2 years and 9 months to be exact. Anyways, it was just a mommy moment.
We went to pick up her new wheels this morning. Our awesome wheelchair/seating tech called it “her highness’s throne”, and I think that’s gonna stick! I’ll have to get pics up of her in it when she wakes up from her second nap!
So there’s the Kendall update. now I gotta go type one up on the Gimpster and how he is doing post-surgery.
Thanks for checkin’ on the K-Quinnster!