Wednesday.

This is going to be a quickie – well, as quick as it gets around here.

Seriously – this will be bare bones stuff that I will come back and fill in the gaps on tomorrow.

Today started out by me coming over from RMH (the ronald mcdonald house where i come to sleep for a few hours every nite) to our nurse telling me she had orders to take Kendall NPO cause of her MRI in a few hours. This was further compounded by pulmo coming in to talk to me about the bronchoscopy and having me sign consents – it all made me think we were indeed doing the “big testing” today.

turns out that apparently “MBSS” (modified barium swallow study) and “MRI” look a little too much alike for a night nurse at the end of her shift!

So once we got that all figured out, Kendall was able to eat a quick breakfast (three trix balls, a bite of english muffin, and two bites of pancakes), and then got taken NPO again (this also means tube feeds – it means no food at all. Well, ok NPO means nil per oral …. i digress.

what was on the agenda for today was that she had a one hour EEG (leads hooked to her head to watch for seizures or seizure activity in her brain waves – tons of fun for a very sensory kid), the MBSS to see if she is still aspirating or an aspiration risk, and the EKG on her heart (not to be confused with the ECG or “echo” that was a dismal failure yesterday).

I will get into details tomorrow – I promise – but the long and short of today is that she does not appear to be having any seizure like activity on the EEG – GOOD NEWS!

She can safely swallow purees (which we previously did not think she was swallowing safely) – GOOD NEWS.

we were able to get a calm quiet 20 second picture printed out of her heart from the EKG – GOOD NEWS.

We finally had immuno lay out a plan for us with the IVIG – this is GREAT news!!!! One of the biggest questions we had in coming here.

And – she got essentially a D+ on her thin liquid portion of the swallow study – BAD NEWS. I mean, don’t get me wrong – its not the worst news. It’s just – saddening. If you are lucky enough to know Kendall “in real life”, you have probably seen her happily sucking away on her “bubba” (bottle). (Dear Megan the SLP – I know you hate that she still has the bubba!) It is as much a part of her as her crazy curly hair or her infectious giggle. If she was not able to take almost half of her calories in by “bubba” every day, she would be hurting in a bad way not only for calories, but for hydration. Even hooked up to the pump 24/7, she would still make just over half her daily goal. Plus her ability to walk around uninhibited would be greatly reduced. But – in more than a few conversations over the past couple of days, it is becoming clear that not all is as well in the swallowing/keeping food out of her lungs/keeping food in her stomach arena as we have lulled ourselves into thinking these past few months.

Don’t worry – she can STILL HAVE her bubbas! (I know all of you who aren’t grandparents of KQA were just waiting on the edge of your seat for that announcement).

but – we have to start thickening any liquids she takes by mouth with a super thick clear goop called – watch out this is creative genius right here – “Simply Thick”. I know!!! BRILLIANT!!!

Because I just needed one more thing to do in my day. Now I get to make my daughters bottles the equivalent of trying to drink a chocolate shake through a coffee stirrer. We gave her her first thickened feed tonite and she took one tug on it, pulled it back and looked at me like – “you have GOT to be kidding me, right???? oh well, I’m tired – BOTTOMS UP!!!” The effort gave her a wicked case of the hiccups for no joke an HOUR afterwards, but hopefully she managed to figure out which was her esophagus and which was her trachea while she was sucking like a madwoman on that bottle.

In the long run – I know this is a good thing. It’s just hard to hear it today – because it seems like just one more area she should be “growing out of” her problems, and instead they are just getting worse. But – like I said – it will be a good thing in the long run to have this info because it will help us protect her lungs better, which means hopefully protecting her immune system better, which means hopefully not as many hospitalizations.

We (or at least I – Ben has been at work all week and hasn’t talked to her for more than three seconds) continue to be amazed at Dr. G’s innate sense of being in tune with what Kendall is doing, what things she is looking for, what all these consult reports from different docs coming in hourly every day mean for the bigger picture. She sat with me today for a LONG while and explained through a lot of things, gave me some good perspective. I need to process through it a little more –b ut I will put it all on here soon enough.

for now, I need to get in bed. I am going to need my rest for tomorrow, when the REAL MRI is scheduled for. Tonite we are stressing kendall’s system out (on purpose) in order to get good baseline metabolic labs. It scares the whoopie out of me because this is what we kill ourselves to AVOID on a daily basis at home. But – i know we need this labwork, and I know she is in very capable hands here at the hospital if she DOES crash. She will be getting fluids only – no dextrose, no feeds. But at the first sign of stress, test over, sugar in. So – since no one knows her random little signs better than me, I need to be there. I need to be there in case she starts getting stressed out in her sleep and can’t give us any good signs. I need to be there when they come in to draw labs off her already failing IV without the aid of a tourniquet to get good blood flow. I need to be there when she wakes up to a team of people “doing stuff” to her and she scans the crowd for that one familiar face, mine. so I can sing twinkle twinkle to her even though she is screaming “NO” at me and biting through her binkies in frustration and pain.

so I need my sleep.

more details will come tomorrow. And in case I haven’t put it somewhere else – She is first on the OR list for the morning – 7 am Eastern time she will have an MRI/MRS, spinal tap, bronchoscopy, and then sedated echo. Anesthesia will keep her under while cardio determines route (PDA closure or not), and then that will either be performed right then and there or she will be taken up to recovery.  I have been told that anesthesiologists know all about her prior reactions to certain kinds of anesthetic and that she WILL need a PICU bed if they decide to hang a LR (a solution they like to use in the OR for ????? no one knows why they like it when it causes so many side effects for kiddo’s mostly, and especially for kiddo’s like kendall). This is what happened after her last GA (general anesthesia) – and it was brutal to watch. I know that with some mito/metabolic kids they say no LR as a precaution – it is a proven FACT for kendall that it will cause issues. I am prepared to go in with my boxing gloves on – but I have a feeling that they already know exactly what to do for kendall quinn (from her awesome doctor!)

So – that’s that for tonite.

Thanks so much for all the awesome e=cards you all have sent – they nearly cover one whole wall across from kendall’s bed! SO very heartwarming! and the prayers are definitely being felt! So thank you all!

have a good nite!

 

terra

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