Tuesday morning.

No relation to the store of the same name.

So – the first nite I leave her in the capable hands of only the nurse, and this is what I get:

Kendall vomited twice that we know of, possibly a third and fourth time depending on a few suspicious things. I KNEW something was up last nite when she woke up from her nap in the afternoon. It was apparently quite a bit of vomit as I came in to a naked baby and a pile of dirty laundry in the corner (and that was just ours – the rest got sent to hospital laundry!)

In and of itself, this is not a huge deal. The sun rises, the wind blows, and babies vomit.

But for kendall, this could mean the start of any number of random, probably complicated, things. It means her gut motility (movement of food through her GI tract) is totally tanked, building up enough pressure to blow all that food past her fundo (the surgery she had last summer to keep food IN her stomach). What she didn’t throw up of her nite feed, which the nurse and I both assume was the majority of it, ended up coming out into her farrell (drainage bag that is attached to her G/stomach port). So the charge for the mystery illness that is now part of this mystery diagnosis begins.

The one good thing is that her nurse definitely got a crash course in “Kendall101”! She actually said, I was going to wash all her clothes but then I thought, she’ll probably end up being allergic to the detergent and i’ll just make a big deal even bigger!  I had to laugh at that because it’s SO TRUE. It would be just like kendall to pull a random contact dermatitis to the hospital detergent, have a horrific reaction which scared everyone, and then never be allergic to detergent again.

So now that everyone is a believer in the fact that Kendall can pull random stuff for no rhyme or reason, things are definitely movin’ right along! They called the IV team (THEY HAVE A TEAM DEDICATED SOLELY TO STARTING LINES IN KIDS!!!!! I know this is probably par for the course at most children’s centers – but i am personally in shock at it still!), they were able to start a line – but its in her hand where she has the most scar tissue and where she tends to infiltrate the most. We’ll see – I am holding out hope that this one might last for a whole day! She keeps holding out that arm to me and whining – like “ok mom, take it out now please!”

They then proceeded to take almost one ounce of blood from kendall (a little over 20 cc’s) – it’s never a comforting thing to hear a nurse walk out of your child’s room going “if you need four people to help with one kid’s blood draw, they ordered WAY too much blood!” I also heard our nurse basically accost the pulmo who came in to check on us and say “if you are thinking of ordering bloodwork you have another think coming – NO WAY can we take more blood out of that kid today!” That made me laugh out loud too!

so now she isn’t really tolerating any feeds (she wanted a bottle but it all came pouring right back out her G-port), she doesn’t even want a sucker – which is saying a lot for how crappy she must feel. We are trying the “bubba” (bottle) again, but she has assumed the falling asleep/leave me alone position – turned on her side with blanket pulled tightly over her face.

I am hoping this doesn’t cause too many bumps in the road with everything else they want to do.

here’s the scorecard as of 9 am, Tuesday morning:

Pulmo – whole team (doc, resident, student) in to consult/history and make suggestions

We have done her morning meds (nebulizer treatment and Qvar inhaler) AND we started the cough assist machine this morning. If you’ve ever seen the movie Monsters Inc – you know the scream machine? yeah…..it’s that. It’s a big mask that fits over her nose and mouth and essentially takes deep breaths for her – kind of like a bi-pap machine – but the end goal is that it makes her cough. And sure enough it DID! I was actually shocked to hear a REAL cough out of her! Of course now she is all junky sounding, so hopefully she keeps coughing or its just all going to settle back down in her lungs – but YAY! Finally something to help us help her clear all that crap out of her lungs.

Pulmo is also going to be pushing hard to get into the OR on Thursday during the other procedures in order to do the bronchoscopy (camera into her lungs). We have needed to do this for a while, So I hope it all works out logistically.

Opthamology also came by yesterday afternoon to do an eye exam. They say things are mostly normal looking in there (they dilated her eyes – they are STILL dilated this morning!), but the right eye was definitely giving them trouble. this is in line with the fact that kendall’s right side everything seems to not really keep up with her left. But I don’t know what it all actually means yet. Hoping Dr. G has some thoughts when she gets all the reports to put together.

while we were doing the above two things, the GI team and the Cardio team came by, and I heard were hoping to come by this morning and do a consult, possibly and echo for Kendall. So we’ll see what happens there. We are at least much farther ahead with the team discussions/multiple consults than I thought we would be at this point.

So that’s what’s up right now. Will update more later – possibly with some pictures soon!

If you didn’t see the facebook update – they have this neat thing here where you can send Kendall an e-card. They print them all and deliver them to our room so we can hang them up! I know a few of you sent them yesterday and i haven’t seen any yet – but the morning is still young and we are up on the 8th floor.

Here is the link to that if you are so inclined:

http://www.chp.edu/CHP/ecards

Thank you for checking on us!

terra

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Comments

  1. It sure doesn’t sound like you are having any fun. Please give Kendall a nice sit in your lap hug. I am sure she wonders why did my mom leave me last night and why must she go through this… hopefully you will get all the answers you will ever need.

  2. Wow! Gotta love it when our kids throw everything at them right away! At least it helps them to see that you’re not crazy! LOL! Cuz that’s how I often feel when I take Kira in. I’m glad things are moving along well too. I hope that you continue to get some answers that you need!

  3. Glad to hear things are trucking along! Lol about the cough assist- you are right, it *is* like the “scream machine”- I never thought of that before! I’m glad it’s helping her. Did they have any ideas why her respiratory issues are so bad? Hoping for more updates about really useful consults!

    🙂

    Jessica

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