Friday, July 10, 2009

A quick bonk

For a long while after Ellie came home in December of 2006 we kept the 'go bag' all packed a ready for an unplanned trip to the hospital in case of a line issue, a sick girl or a range of other issues that could send us east bound to Children's.

After a few years of smooth sailing, we let the bag go, took out Abby's PJs and toothbrush and ultimately put the whole bag in the closet.

This afternoon we had to 'ring the alarm' for the first time in long time and for a about ten sweaty minutes I cursed every item that ever left that bag.

It all happened like this. Which may seem dull from a distance but was definite not so for us.

first off, Ellie has been barfing for us every now and then for about two weeks. Usually first thing in the morning but also during the day she will give us a funny look or ask for us to 'vent her button' (attaching a tube to her G-tube button and letting out gas or excess liquid to relieve the pressure) which is usually followed by a significant barf.

Yesterday Ellie had an especially large and explosive barf while I was off educating celebrities and she ended up at Children's for a barium study to check for kinks, obstructions and other problems with her newly attached bowel. All signs were good and the doctors even noted that her bowel looked better than it did pre-op in May.

This was good news but to get that news it involved putting a lot of barium chalk into her fickle gut, barium that could turn into constipation or other probelsm if it was left in there. A series of enemas (ouch), and suppositories cleaned her bowel out pretty nicely but left her a bit dry by lunch today so we hooked her up for a naptime round of hydration to help her catch up.

She napped until 4:20 and came off the IV around 4:30.

Taking her off the IV is a standard routine: Stop the pump, unhook the threaded conenction, wipe with alcohol, attach a saline flush and push in 10ml of saline, detach, wipe again, attach a heparin syringe and add 5ml of heparin to lock the line and prevent clots.

around 4:45 we noticed that Ellie wasn't quite awake or perky like most days and was, in fact, prone on the couch, moving toward sleep. She was also quite sweaty on an otherwise cool day.

We tried perking her up but she told us that she felt bad, wanted to barf, and wanted to go back to sleep.

Something was wrong with the happy Ellie.

It took us about 5 minutes to realize this and make a call to her surgeon to tell him that we were coming.

[Insert frantic scrambling and packing here]

Along the way to Children's for good measure Ellie barfed for distance and by a little past six we were in the ER expalining Ellie to the residents who had been on the job a total of 8 days.

Part of the diagnosis was drawing blood cultures from her central line- a very similar wipe/flush/wipe/f;ush operation. Curiously, we saw a similar result in a sweaty Ellie who became very tired and lethargic after the flushes.

Aha! we said to ourselves, we've read about this: Bugs living in the central line tube get dislodged when the flush happens, spreading bugs into the bloodstream and causing a reaction, a fever and lethargy.

So with that intel and self diagnosis but Abby and I, the docs admitted her and discontinued the use of her central line until we know what the cultures say. They may also say absolutely nothing and then we go looking for a different cause but for now, considering the significant risks of central line infections and general sepsis, we treat that.

The vancomycin starts tonight through her fancy new IV line in her hand and Ellie is comfortable in the very same bed we left at the beginning of June. She woke up in the tranfer from the ER just enough to see the room and tell us 'Oh good, the big room with the fluffy bed!'

She isn't acting sick but is very tired, groggy and generally not the girl we know.

We are crossing our fingers that we caught whatever it is in time to keep the line working.

From the action of Disney to the stagnant waiting of the ER in one short week.

Never a dull moment

By the way, to the scumbag who stole our towel from the top of our car in the Children's parking lot tonight while we were inside: I hope you enjoyed the copious load of Ellie barf that was wrapped in that towel.


Anonymous said...

What a team she has looking out for her! Nice work mom and dad. Tell her I love her!

the crucible said...

Sometimes karma is instant. Get well, soon!

Anonymous said...

Aw....I feel so helpless! Poor Ellie! And she seemed FINE yesterday! Giggling and being her happy little self! A little pale but I thought the hydration would take care of that....I wish I had stayed on longer in the day to be there for the incident so I could have helped get all the stuff together. That's it! I am putting a "GO BAG" together for Ellie for the future first thing Monday Morning! (provided you are discharged by then!) My prayers are with you guys-as always. Will wait for updates...Love and hugs from Kah