Home!

We were released from the hospital on Monday morning and Lucy is feeling pretty good.  She bounces back so well from these episodes it's hard to imagine that it happens at all!  After a day at home to recover, she wen to school for 1/2 day on Wednesday and Thursday and then was off today (the whole school had a day off).  She is ready for a 3-day week at school next week and we are hoping to visit Grandma and Grandpa at the lake next weekend!

She was sent home with the typical instructions - laxatives until she is back to her normal patterns and a suppository the keep on hand "just in case."  Here's to hoping we don't need it!!

Back to the hospital

Even when sick, up for a quick chat with Grandpa on the phone

Well...we made it through a month of school with no major sicknesses, but our luck has run out.  Last weekend Lucy started not feeling well, she had a fever and didn't eat real great on Sunday and Monday and Monday night had some tummy issues.  By Tuesday morning, we were at the dreaded throwing up every 15 minutes.  We stuck it out at home until Wednesday and I think we were CLOSE to being able to get her through with our arsenal of home remedies, like OTC anti-nausea medicine, essential oils and warm packs for her tummy and encouraging frequent sips of water.  However, we did not succeed and took her to the ER on Wednesday for fluids and she was quickly admitted to the hospital.

The story is very similar to past stories...unable to stop throwing up, no gut motility and high blood pressure.  Here is what we've tried so far, along with my somewhat informed medical perspective:

Wednesday:
 - Zofran (anti nausea medicine).  Zofran works by blocking Serotonin signals to the brain.  However, Serotonin is thought by many to be the key to the functioning of gut muscles.  It can stimulate receptors in the brain, which causes vomiting.  Since Lucy has hydrocephalus, could that be causing slow or broken signals?!?!!?!?  Or is it possible the blocking Serotonin early in Lucy's treatment is exasperating the problem since it is a key to a healthy gut????

 - IV drip to hydrate and maintain electrolyte levels...continued until she gets to go home!!

Thursday:
 - NG tube into her stomach (through her nose - she HATES it!).  Goal to suction out any stomach contents and extra air to allow her stomach to rest and stop throwing up everything it comes into contact with.  Drawback, it's uncomfortable and sometimes having a tube at the back of her throat can trigger a gag reflex.  Plus when coughing or throwing up, it can come back up through the mouth and the tape used to affix to the face causes major rashes and dryness on her skin.  Bonus is that some yucky tasting medications can be delivered directly to her stomach and has a better chance of staying down.  Lucy got hers early on Thursday morning and it was removed on Friday afternoon.  It was super successful in helping her to stop throw up

- Hydralazine (Blood Pressure meds) because her blood pressure is always high in these situations (like 130s over 90s...)

 - Suppository to help her poop.  First one didn't work but second one did so that was encouraging to see something moving in the right direction

 - Senna (oral laxative that irritates the lining of the bowel, inducing a bowel movement, ideally).  It was administered through her NG tube.  I feel that this has not impact, personally

Friday:
 - Continuing on the course of action above, limited puking but very sleepy Lucy all day.  Might have introduced an acid blocker to calm stomach, not exactly sure which day that happened on!  Whatever day, it tastes super minty and Lucy does not tolerate it orally.  It is given through her IV

Saturday:
 - Miralax (oral laxative that works by keeping water in the intestines and colon, thus softening stools so they move through the body).  She actually drank this dose in 4 oz of Apple Juice with no issues this morning
 - Kidney ultrasound - because of all the high blood pressure...haven't heard anything yet.  I have absolutely no worries because her BP always returns to normal after illness and I think the nurses and machines are terrible at this particular task so it's about 60% accurate anyways (rant over)
 - Continued with the same other drugs...since she doesn't have an NG tube anymore, the Senna by mouth induced vomiting (big surprise!)
 - Some pep from our sweet little girl...she drank about 12 oz orally ate a few Cheerios and tried a popsicle, only throwing up once (aside from the medicine-induced vomiting)

I really keep those notes as much to inform you as to help me look back in case this happens again!

I am hoping to be released tomorrow, but she truly does still have a ways to go to keeping food down and improving her gut motility.  What a bummer to miss a week (so far) of Kindergarten and life in general!  Lucy is a TROOPER and I'm not sure if this gets easier as she gets older because she can tell us more what hurts or more difficult because she is more fearful, stubborn and remembers what happens in these situation.

Hoping to blog with better news soon!!!