Our mornings are getting back into a rhythm and routine with the return to school. My children are all still up at the crack o’ dawn – in spite of the fact that their bus does not come until 8:40 am. It was weird yesterday to have such an obvious line of demarcation between my “olders” – both going to school all day, and my “youngers” – staying home with me all day. K3 and K4 seemed to enjoy being able to play with ANYTHING they wanted without having it ripped out of their hands by their older sisters who “were going to play with that in a few months” or “wanted that to be special!!!” (referring to a mcdonald’s happy meal toy or some such trinket).
In spite of the fact that she was clearly pretty weak from her recent hospitalizations, Kendall tried bravely to keep up with Kaylen, until she finally passed out for a four hour nap. Luckily, Kaylen also had a nap during this time, and if THAT happens every day – I will be one productive super trooper indeed! unfortunately yesterday I felt like I should have taken a nap too. Monday night was the 5th nite in three weeks that was spent in my own bed – it was a welcome collapse into bed after getting home from the hospital at almost 11 pm!
As to how Kendall Quinn is doing…well, that remains to be seen. I have been, let’s just call it “distracted” thinking about what Plan B is from her GI doctor. They let me bring her home from the hospital on “feeds” of 5cc/hr. Most preemies can handle more than this into their tummies. It is one dose of medicine, one medicine dropper-ful, every hour, very slowly. It is nowhere near enough to even keep her hydrated let alone fed let alone catch her up on calories which she really desperately needs. She absorbed almost 2 lbs of fluid over the weekend – meaning either that she was WAY more super dehydrated than her labwork even showed, or that it is somehow leaking into her tissues instead of being turned into urine by her kidneys, or – she’s got the world’s hugest bladder right about now! It is probably a combo of all three of those – lumped together under “autonomic dysfunction”. On her best days Kendall’s autonomic system does some crazy stuff, but it usually stabilizes itself, or has adjusted to the craziness, so we don’t mess with it too much (this is things like her body temp, her sugar reaction to certain foods or to “fasting”, peeing too much or not peeing enough). However, after a huge stressor like this weekend was to her (metabolic acidosis), her autonomic system is pretty much haywire.
So they let her bring me home because a.) their only plan was to continue to dump her full of fluids even though they weren’t really coming out as well as they should have, and b.) her pulmo HATES playing GI/metabolic/geneticist to her! He does it out of his love for her and his concern that she get the best level of care as close to home as possible – but he hates it. So – I called our GI, got plan B, and convinced them it was ok for me to bring her home that I could work on feeds just as good at home as I could there. She was interested in some oral eating again, could sit up without puking, and had managed to keep her sugar up for about 4 hours after stopping the IV sugar water. All good signs to me.
Unfortunately – not quite enough for what Kendall’s body NEEDS right now though. I was relatively pleased with her feeding progress yesterday, till I added up her 24 hour intake from stopping the fluids. Between what I was able to pump into her intestines at half her normal rate, and what she wanted to take in orally – she had 16 total ounces. About half of that was pedialyte, meaning she had 8 ounces of “nutrition/calories”. Subtract the 10 ounces that she dumped back out of her g-tube, and we aren’t making a whole lot of progress. Yesterday afternoon she was seeming to perk up a bit more, and we got a few more ounces of full strength formula in (4 to be exact), plus some more pedialyte-diluted formula, and i was able to bump her nite feed up a little higher. If she has a super-excellent day – she might be at half of the calories she needs for TODAY.
Her urine output is back down, the pressure in her intestines is popping open her med-ports (they are little openings on the tubes so you can push meds in without having to unhook the feeding pump – helpful if you have a kid whose motility is good, not so helpful when things are like this!), making her lose even more formula and bile, and she has not had a BM in 5 days. All things making us think that while she has gotten herself out of the metabolic acidosis danger zone – she is still not up to par for what her body needs. Now in a regular kid who had maybe a post-op ileus or even just a touch of gastroenteritis – you can have a little leeway. they will lose weight, sure, because their body will dig into its stores for calorie sources to keep itself going.
With Kendall, its not quite that easy. 1 – she just doesn’t have a whole lot of stores. She has more NOW than she ever has in the past, which is excellent, but her body burned through those real quick with all the vomiting. 2 – her body doesn’t effectively know how to make energy from calories (food) and oxygen on a good day, let alone when its “stressed. That much we do know about whatever metabolic dysfunction she has.
So – we are left with Plan B. I am not quite ready to commit Plan B to “paper” yet – those of you who have been through gastrointestinal slowdown/shutdown know what it is. For those who don’t know – let’s just say we may have to head up to milwaukee in the next 48 or so hours to be put on the OR schedule, and come home with a drastically increased medical load. Right now – it’s all up to God and the doctors to decide. I know she needs more than what she is getting right at this moment. I am sure that Plan B would give her a huge boost even beyond just this immediate deficiency. Plan B would enable us to meet with one of the leading motility experts in the country as he happens to be the GI on service this week. Plan B is not a bad plan….it’s just a hard to swallow one. (HA! get it! hard to swallow…cause….kendall isn’t swallowing well…..ok nevermind. too soon…)
All joking aside – it is weighing pretty heavily on my shoulders right now. I am not sure that I will be “happy” either way – if we don’t decide on plan B, i’ll just keep worrying about her and am afraid that plan B will become inevitable at some point in the very near future, perhaps after permanent damage to her minimal gut function has occurred. If we DO enact it – well, it’s just a lot to wrap my mind around. But I think going FOR plan b is probably the best thing to do right now – to ensure that it is the shortest amount of time possible. It will make this WEEK crazy – but hey, i am pretty sure we’re firmly into crazyville already.
So please pray – for our doctor as he makes the decisions and necessary arrangements. For the other girls as they will once again be in upheaval if we have to be admitted in milwaukee for a couple days. For kendall to endure another procedure if that’s what is decided, or to have the strength to endure through another couple weeks of minimal nutrition as we ramp her back up slowly from home. And for me – to retain the shred of sanity I have left. My mind is consumed with this plan and the decisions contained therein. And I would REALLY like to get off this topic already. Or even this merrygoround.
Thank you to all the good friends who have listened to me vent and process and whine through this past week of chaos. Thank you to all of you who pray and lift us up even when I haven’t asked for it. Thank you to our wonderful family who have rearranged their lives this past couple weeks to make sure that we don’t all fall apart. Words are not enough to thank everyone.
Off to see if some dunkin’ donuts’ X-tra X-tra can’t help sort things out a little better…and MAYBE a chocolate frosted. maybe.