Today’s appointments were MUCH quieter (because my awesome mom kept the other 3 banshees) than yesterdays, but went equally as “well” as one could expect given our subject matter. Kendall spent the entire hour in the GI office playing with the cups and water in the sink, so managed to absolutely soak her outfit and had a nice puddle about 2 inches deep on the floor by the time we were done talking – i cannot even imagine how much worse that would have been with her partner in crime K3 in attendance. Oy. Pass the xanax bottle back over here just thinking about it!
It wasn’t so much that any spectacular new information came out of this appointment – but I think what made it so “good” in my mind was that our wonderful GI spent a lot of time “affirming” his support of what we do for Kendall, how we manage her care, how far we have brought her in 2 years, and all the other million and one things I question and juggle in any given week with regard to “Kendallisms”. We discussed her recent inability to tolerate feeds beyond a day or two in a row, the increased pain episodes with them, the constant fluid battle, and the autonomic “horse and cart” situation (is the dysautonomia causing the GI dysfunction or is it the other way around?) – and in essence, “if it ain’t broke, don’t fix it”.
Kendall is growing and thriving and having great days and a reduced infection rate – doing SPECTACULAR. Beyond needing better pain control and an overall Plan A in place for how many days without feeds can we get away with before we run into trouble, things are working pretty well. Her body has finally found some kind of a happy medium with operating between the TPN, extra IV fluids, lowered J-feed rate and prophylactic antibiotic coverage – so here we will stay. While I hope we do still make GREAT progress towards weaning her off of TPN in the near future, we have a few options. One of which is switching her to a formula that has a different metabolic makeup than what she is currently on. Previously we couldn’t get her to tolerate the calorie load of a toddler formula (she is still on an infant formula) without causing some pretty bad GI bleeds – but we have seen signs that she may be getting less sensitive to the richness of the formula, so we are going to slowly start weaning her over with a diluted version of the new stuff. I am glad that we are finally doing SOMETHING different to try to help her gut get over this hump – but also trying to not get overly excited that the new formula is the be all/end all of fixing a broken GI tract. We are going to trial a medication on a “PRN” basis (i think the letters stand for Per Requested Need, but basically it just means its not a scheduled dose of medication, but something you take when you need it. Like me and Xanax – it’s just PRN. which ends up being every three hours some days but who’s counting, really?!?!?!) The problem with this medication is that it only works on about half of Kendall’s bad day symptoms, and has a slight risk of making some other problems worse – but it’s definitely worth a shot from where we are sitting now, and should tide us over till the appointment with the autonomic GI. (and for my own memory purposes – the tube change portion of our appt day was equally as interesting, as when they went to pull the old tube out, they couldn’t figure out where it even ended because her intestines were so full of air it was distending everything and squishing it all together. The tube was once again encrusted with yeast spores making it all the more important that we strictly adhere to the 12 week or less change protocol. We are feeding WELL down into her jejunem so any days of reversed motility definitely indicate a CIPO like episode, and we should be in better contact with Dr N when these occur so he can adjust her TPN those weeks instead of us trying to play Jekyll and Hyde with her fluids/feeds like we have to now. And I made the room laugh when i said that tubes should not smell like county stadium on a hot summer day. I think that is all from the IR suite!)
Overall – it was just a great GI appointment. I was looking back through where we were at last year at this time on an app I have on my phone – and the irony was not lost on me that my entry for January 5th 2011 on Facebook was “WORST. GI. APPT. EVER.” – the difference a year (and a heck of a lot of medical interventions and TONS of prayer) can make, hey? We were faced with some very tough decisions at our appointment last year – definitely a rock and a hard place. And while I would stay we still live between that rock and that hard place, we’ve managed to find a way to make it a little comfier. Redefine “hard”. Cozy it up with some pretty blankets and glittery wall art.
We feel so very blessed for the absolutely great run Kendall has been having health wise. i do not know exactly what has made the biggest difference, but I have a feeling its a hundred little things all adding up. Dr. N today even told me that his “doctor brain” was very impressed with how I have come up with a fluid plan that works for Kendall, in spite of the very subjective nature of it – that I can keep an eye on her electrolytes, fluids, I’s and O’s, and third spacing penchant, and yet keep most things relatively in kilter. This is why we drive three hours to see him. Instead of pulling some idiot ego out of the closet and telling me i was doing it wrong, he analyzed it like a doctor and actually complimented me on it.
So our choices, while tough and not always “the right ones”, were Affirmed today. They are affirmed every day by the smiles on KQ’s face, the squeals of laughter/frustration/mischief while playing/destroying the house with her sister, by the fact that every day we are home is one less day we spend in the Big House.
I hope to spend many more days in 2012 being Affirmed in the choices we make.
For Fun Trivia – if you look at the picture of the hospital, on the far right you will see how it curves, and on the very top there is a blue round “atrium” like feature – directly below that, on the 11th floor, the larger floor to ceiling window is where Kendall spends a lot of time hanging out when she’s in and feeling good enough to be up and about. It’s just a lounge type area but she loves to sit there in her little red push car and watch the cars driving by. I also take a ton of our pics in that space cause it has such gorgeous light! All the way down at the left side of that same floor is where the ginormous room with the double couch bed was! So there you go – that’s where we hang out when we are in our home away from home. Hoping we can stay away from it for a LONNNGGG time!