Monday Afternoon.

Too much to keep up with on Facebook and/or Twitter – so let’s see how this works out!

After getting a phone call this morning at 9 to “come in immediately”, we waited in admitting for 2 hours for them to find an open bed! (This is typical of most inpatient direct admits – it was the call that threw me off!)

So now we are all checked in and are on our unit, 8B. We are in a “sleep study room”, which is very nice – very large! – and according to the nurse “actually has a view, so enjoy it!” Because we may or may not be moved out of this nice room in our own little corner suite with only one other room by us, and out onto the main floor, where it is loud and busy and chaotic. But considering how packed to the gills the hospital appears to be at the moment, i am kinda hoping we get to stay here!

Kendall has had her baseline vital statistics taken, we’ve met our nurse, and – this is the shocker – WE HAVE SEEN DR. GOLDSTEIN ALREADY!!!!! I am in shock. We have also seen her senior resident who came in to get our medical records notebook. I handed her the 5 inch binder haphazardly organized with papers spilling out everywhere and told her to go have fun! I think she thought I was kidding…

So – they have ordered consults from Optho (eyes), Pulmo, Cardio, Immuno, GI and I-care (intestinal/motility), Genetics – and of course Dr. G and her team (neuro). Watch me pass out in shock if we actually see ANY of them today. Things just don’t move that quickly in hospitals.

Their EMU (epilepsy monitoring unit) is also packed to the brim, so we may not do the video part of the EEG, but just get her hooked up to leads and see what kind of clinical correlations we can get. Now – for the record – I don’t think she is having seizures at all. She has had one EEG (20 minute outpatient) that was totally normal. I think she has weird “electrical discharges” that CAN happen if she is otherwise stressed out metabolically (which for Kendall can be anything from constipation to tachycardia/autonomic dysfunction to just eating too much fruit or something equally as benign) – But I don’t think I would classify them as seizures at all. More like zone outs or possibly staring spells that last just a few seconds too long for my comfort zone, but you know, nothing serious.

Dr. G wants to be absolutely SURE that they aren’t seizures though, hence the vEEG. If she is able to get down onto the EMU (where they have the video part available) – I think Ben or I can’t be in the room with her overnite – but it’s hard to get a straight answer on that from people up here, who don’t work down there. That’s ok.

We did get a room at the RMH (Ronald McDonald House) – so we will go check into that later today. That is a HUGE PRAISE! Now, I can and probably will stay in the room most of the time with Kendall, but having a separate area to go decompress in, take a real shower, do some laundry, etc will be so very welcome.

So that’s what I know right now.

Kendall has a slight fever – nothing too high, but higher than her norm, and a little higher than her typical “metabolic fevers”. And its cold in this room. She has been a little mucusy the last few days, and sounded just on the verge of junky last nite when we got to the hotel, so i am hoping that something isn’t settling in to her lungs from all the crazy travel this week. She is leaking gross stuff out her GJ stoma and it is bright red/angry looking because of it. At least we’re at the best place for her to start pulling “Kendall-isms”!

Thank you so much for all the thoughts and prayers.

If I haven’t passed out from shock (if we actually do see other teams/consults today) – I will try to update later!

Ben just brought me a caprese salad and a coke – HEARTS!!!! So glad he could be here with us this week! I love that he knows exactly what to get me out of the 392 choices at the cafeteria!


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  1. Sounds like things are going as well as can be expected! I know what you mean about trying to see everyone on that team! It all takes time though, and you’re there, so they’ll get to you guys! And great about the RMH too!!

  2. so glad things are going smoother than expected in many ways and SO happy you and ben can be on this part of the journey together. hoping and praying with you.

  3. Sounds like the Lord has his hands working in all of this. I think it is wonderful that your hubby can do this with you. Will be praying for you all.

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