Well, as i had hoped, Kendall’s emergency warning symptoms of Sunday morning seem to once again just be the effects of a very wonky autonomic system! She spent most of yesterday laying on the couch quietly watching her Hot Dog, Eggo (Diego), and Berry Cort-cakes – temp still very slightly elevated, but no more bleeding. We held the new formula all day per instructions from her complex care nurse, and restarted it last nite by adding a teaspoon in with her regular old stuff. Our best theory right now is that it all was just a reaction to the new formula, since she has reacted every other time we’ve tried to switch formulas by having a pretty good GI bleed – they are just typically lower gut reactions, not upper like Sunday’s.
The reason we are trying to switch formulas, for those who are wondering, is because she is still on an infant formula. The kind most babies are fully weaned off of by 1 year because real food starts to replace those concentrated calories. It is pretty high in fat, as babies need a lot of fat for brain development – plus she is getting a precise mixture of fat (lipids) in her TPN every nite. Thus far, her body has obviously been burning through them pretty well as her weight should be pretty hefty given the amount of calories she is getting. But in order to continue protecting her liver, we’ve got to get her on a more suitable formula. we can’t even talk about weaning the TPN further until we can get enough formula into her gut to prove that she CAN take in enough calories to sustain nutrition and hydration.
The problem is that most toddler/pediatric formulas are pretty dense (higher in calories per ounce), which seems to be where we are running into problems. We could dilute that out, but that really isn’t solving any problems. All it means is that we can get watery formula into her, and even then we would be making a major sacrifice in her hydration status. The first step is getting a new formula to work. So even though I had started with a half/half mixture of new formula to old last week that preceded this chaos of bloody gross output – we are going to go even SLOWER…. One teaspoon at a time. If you know me you know how hard this is. I HATE slow plodding progress. I want results NOW. I don’t want to take just one pill and wait to see if it works – I want to take a handful and make SURE it works. I don’t want to just clean my sink and be proud of that progress – I want my whole house to be magically sparkling in under ten minutes. One teaspoon of formula at a time is about as torturous as peeling off my own toenails.
But if that’s what it takes, then that’s what we’ll do. I mean, I know I’ve joked with Kendall that she’s a diva and a princess before – but this surely seals the deal! Of course if we run into similar problems at some point, with the bleeding increasing and the discomfort becoming obvious, there are a few other formulas left to try. since we’ve already had similar results with some of the more “common” kinds of elemental toddler formulas, we are somewhat limited – but I have faith that we will find just the right one that will work and keep her growing and make her gut happy enough to tolerate “food”.
And of course this is ALL assuming that the blood was even a reaction to the formula. It seems the most logical explanation at this point – but everyone is still mostly shrugging their shoulders and hoping it doesn’t happen again. No one more than me! She is running around (ie – being drug around in the laundry basket by kaylen) again this morning – which is encouraging. I can breathe a little easier! Luckily the girls are off school again today for Teacher Institute Days – I don’t know that I would have sent kendall anyways even if she HAD had school just based on the last couple days.
In Other Medical News…
Our beloved pediatrician called yesterday to leave a message for me: “don’t worry or panic yet – but it looks like there is a tumor on Karissa’s MRI. I am trying to get in touch with the neurologist and I’ll be in touch once I talk with him.” Note to self: do not listen to voicemails from the pediatrician while driving on the freeway. I about swerved off the road. now I do realize that in ALL likelihood, they are both looking at the same thing. That what the neuro termed a “cyst”, Dr. N is terming a “tumor” – and they are more than likely both quite benign (normal) in nature. Alternatively, Dr. N could be looking at more of a full report whereas we are pretty sure Dr. K (neuro) only got the “initial report”, and that upon further investigation by a more experienced radiologist, the cyst/thing actually looks more like a tumor. Again, likely benign as it has only just now started causing “issues”. I think I am doing a pretty good job at staying mostly calm while we wait for more info. I don’t know if they saw it on her spine or on her brain – as they did thorough imaging of both. I know that Dr K referenced the cysts as being on her spine in his office the other day – so hopefully this isn’t some other new thing somewhere else!
And then at LONG AWAITED LAST we have Kaylen’s consult with the ENT tomorrow to discuss tonsil/adenoid removal surgery. I have so much hope vested in doing this surgery and hopefully curing all of the issues we are seeing in poor kaylen – most of which we assume are stemming from next to no sleep due to what we believe is pretty bad obstructive sleep apnea. (Her tonsils and adenoids are quite large, meaning that most of the night she is having trouble maintaining proper pressure in her airway, meaning her brain is waking her up a lot of times to remind her to breathe. meaning she is up for the day after about the 89th time of this. which is roughly around 4:30 am. Not a good combo.) No she has not had a sleep study – everyone except Kealey has been “recommended” for one, but there aren’t a whole lot of sleep centers equipped for peds around here, and even if there were, insurance fights would take months. I am sure that at some point this year at least one of the K’s will have a sleep study –and once that first one is through, insurance will likely approve the others. This is all based on her rather obvious symptoms of apnea, both asleep and awake. Hoping he has a good plan to get our whole family some relief soon because Kaylen’s behaviors are becoming extremely unbearable to us all – and you can just look at her and see how miserable she feels.
And as i am about to hit enter I just got an update from her nurse that Kendall’s temp is again back up. Awesome. So we’ll see how much fun we can squeeze outta this day!
thanks for checking on us!
If you aren’t already a fan of Terra Talking on Facebook – click over there to the right on “like” – you’ll get the blog updates and if we ever were to have to go in for Kendall’s stuff – I would update it there. Help me get to 200 fans by the end of January please! (stupid silly personal goal – I know far more than 200 of you read here every day – so stop lurking and come join the fun!!!)
Hoping for a little more calm around here~