And head out!!!
(hey, the humor’s free around here – take what you can get!)
Biggest news of today – Dr. A thinks he will write discharge order for Kendall tomorrow morning! All teams have made final reports and they all are pretty much blaming nutrition/GI for the root of all her problems, so since we’re all in agreement that she clearly looks, sounds, and appears to FEEL 982% better, we’re hopefully homeward bound!
Today she had two tests – a VCUG to check if her kidneys are refluxing and if that is causing the swelling she has in her kidneys, and a “video swallow” scan. The VCUG results will probably not be ready for a few days, but they are relatively confident that even if there IS a defect, it is not really remotely related to her overall major health problems. She has a 50/50 chance of having the same defect that Karissa has, leading to her frequent UTI’s – and if Kendall ends up with the same thing, she would need to be started on preventive antibiotics because her system can definitely NOT handle having a kidney infection, at least anytime this year! (Did you know that babies cannot get UTI’s? They don’t have a fully formed/long enough “tract” to get infected – they go straight to kidney infection – which is even worse for them – fun medical fact of the day for you there!) Anyways – so while the results from that test will be helpful in determining future care plans, we aren’t waiting for the results with bated breath. Which I guess is kind of a nice change for once!
Now the video swallow is a whole other story.
This current evaluation started two days ago when a speech therapist came in to see if there were any swallowing issues, and she immediately picked up on a pattern of something being “off” with her feeding issues. I am really working at trying to control my frustration and anger about this point – but i am severely disappointed in the fact that our ped’s office in THREE MONTHS worth of visits never once asked me any of these simple questions that the speech therapist asked and had alarms going off in fifteen minutes with Kendall. i mean honestly – two months ago if her ped had said, now how much is she choking and gagging with each meal? Is she falling asleep during a feeding? maybe we should send her for a swallow study to see if there are any noticeable issues with her reflux being the cause of her FTT (failure to thrive/weight loss) – do you have any idea how much pain and heartache that could have saved my child? And yet I know we HAD to be here. We HAD to get some of the answers that I am confident only THIS TEAM of doctors could provide. It still frustrates me that that office ALMOST had me believing I was crazy, and I hope that other families and their sick babies aren’t falling through the cracks of that office like we did.
All said and done though, she failed her swallow study miserably. She was sat up in a foam carseat, tucked in with towels and blankets and I stood up facing her and fed her a bottle – her first in a week! She was so excited! – and they took a contrast image of her swallowing from the side. VERY FIRST SWALLOW it goes right down her lungs so they stop the test while she chokes and gags and struggles to catch her breath. And I realized – yep that’s what she does pretty much every feeding! I always thought it was just part of her reflux – so I’d calm her down, put her back on the b.r.e.a.s.t. or bottle and keep trying. The speech therapist and radiologist were quite alarmed with the severity of her failure today though. She started to do the same thing with the thickened feed, which they gave her next, and that would have been even worse so – TEST OVER! It literally took us longer to get her in position than the entire procedure lasted.
in layman’s terms – Not eating enough is killing this child, and yet eating is the very reason she can’t eat enough. She is swallowing a good portion of her meals, leading to her pneumonias, and the little that does stay down is refluxing back up and rarely stays down. Bottom line – she will be on tube feeds for probably much longer than we first anticipated. It is literally “dangerous” for her to consume liquids through her mouth. I don’t know why that thought is so sad to me. I guess cause it’s such a natural part of life – to eat and drink and nurse and receive comfort…and now she can’t. I will pull her food out of me with one machine, and insert it into her body through another machine. This seems wrong on about 94 different levels to my “granola mom” instincts. But in order to keep her alive and get her healthy and put fat on her scrawny little bones, this is what we will do. And we will learn together how I can drop a tube, a procedure that easily requires 8 hands, and that’s if the baby’s fast asleep and cooperative. And how to pack her pump up in the cute little mini-backpack that I am SURE will be stolen by a sister at some point so that we can take the feeds on the road. And how to time her IV injections with preschool and errand running and naptime and physical therapy and speech therapy and today her newest therapy – VITASTIM!!! Doesn’t it just sound like boatloads of fun? I mean honestly – what a fun name! VITASTIM!!!!
YEah not so much.
Essentially she will get tiny electrodes placed on her neck that will shock her esophagus into the work of learning to swallow food and keep it down. I gag just thinking about it. She must do this four times a week for the next couple of weeks, and then have a repeat video swallow scan done to HOPEFULLY see some improvement.
Ok it has taken me almost two hours to write this all out and i am afraid it is losing continuity.
I hope that it helps give a little clearer update to those of you awaiting it though – please feel free to ask me if i didn’t make sense about any of what we’re waiting on. I so appreciate your prayers and concern for kendall.
So now we will try to go to sleep. No more breathing treatments through the nite, and she just pulled out her NG tube so I got to practice that again – IN MY GLASSES! (It’s a family joke that I am so blind that I should not be allowed to do anything except brush my teeth in my glasses – and now i just performed a medical procedure on my poor child with my coke bottles on!) She seems to be happy though so I am assuming it’s in the right place and I didn’t fill her tummy full of air!
Hopefully tomorrow is the day we get to return to normal. I am excited to go home and sleep in my own bed with my baby right next to me instead of across the room in a metal crib. I cannot wait to have a real meal at our little table and sing happy birthday to kealey with candles in the little cake Ben bought her at Jewel tonite. (I am trying to swallow my pride at not being able to have baked her her favorite kind of sprinkle cake…)
My back hurts from a week of sleeping on a fold out couch and standing vigil over my baby’s bed as her breathing has calmed from distress to labored to crackly to normal. I am tired beyond tired and relieved beyond relieved.
We are blessed indeed.
Thank you so much for everything.