Another round of GI issues

Thowback to a happier day - outside with sissy!!

UGH!

Lucy is suffering from another round of GI issues.  She threw up on Monday night after seeming to be fine all day.  I gave her a suppository and she did have a bowel movement, but was pretty sleepy on Tuesday and still throwing up some.  By Tuesday evening, she was feeling better and we felt comfortable enough to go to my parent's on Thursday for Thanksgiving.

However, since we got home on Friday, she's been throwing up and has only had 2 small BM's, despite 3 suppository tries.  We have opted to keep her home for now but know she will need fluids soon as she hasn't kept more than a few sips of water and 2 popsicles down since Friday.  I am very hesitant to go to the ER and subject her to X-rays, ultrasounds, MRI's, medicine, etc. etc. etc. and am hoping to avoid it altogether this time.

I have no idea what is causing this, but have a theory that it might be related to chronic got motility issues.  Since school has started Lucy's normal food and digestive schedule has been thrown off, so I am planning to keep her on a maintenance laxative once she recovers in the hopes of avoiding this in the future.  The current bout does not seem to be related to sickness or infection.

It's so hard to figure out and super frustrating - I want to take it away and never have her be in pain again.  And of course, true to form when I was giving her a bath on Saturday night and crying because I felt so bad for her, she reached out of the bath to give me a hug and tell me not to be sad.  Seriously...rockstar 5 year old right there.

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!!!

Esophagus Dilation #25

Lucy had her 25th esophagus dilation this week.  TWENTY FIVE.  I can't believe it.  That's 25 times under general anesthesia (not including her other procedures), which is concerning considering there is some evidence that repeated exposure to general anesthesia can cause learning and language delays when administered to young children.  It is concerning because that is a lot for a little body to deal with and there is always a risk that her esophagus will rupture requiring major surgery to repair it again.  And frankly, it's concerning because I'm her mom and I never want her to be hurt or scared or uncomfortable.

True to form, Lucy did great.  She had a quick procedure and a very quick recovery...probably her best one yet.  We are often at the hospital for 10 hours on these days, but this time it was only 5 hours - Praise God!!  And for the best news...her esophagus stayed fairly open.  Her GI doctor is comfortable with an annual checkup in a year with the potential for an endoscopy / dilation, but it might not even be needed.  Jason and I are THRILLED, to say the least!  It is great to have this behind us for another year and be ready to focus on KINDERGARTEN for Lucy.  To think we started these procedures over 4 years ago, every 3 - 4 weeks, it's awesome that her body has come this far.  

On Tuesday, Lucy will be getting on the bus and heading off to Kindergarten.  How awesome is that?  We've met her teacher and "case worker" and the school nurse and have given handouts about hydrocephalus and TEF to them.  It's an uncomfortable feeling to not be able to know everything about her day when she goes off to school, but our little one is ready to spread her wings and fly.  I can't wait to see what God has planned for her.

We will share pictures from her first day of course!!

This week is a time for being joyful in our hope for sweet Lucy's future...may her diagnosis strengthen her, not hold her back.  (Romans 12:12 - Be joyful in hope, patient in affliction and faithful in prayer)

Lucy is quite excited to have lost 2 teeth already!

Throwback from the 4th of July

Hanging on to summer as long as we can!

Lucy is 5!!!

Yep, you read that right - Lucy London Bryant is 5 years old!  I cannot believe it...5 seems so much more grown up than 4, doesn't it?  Jason and I are beyond proud of how far she has come in her 5 short years...we've gone from doctor's appointments almost every week to months and months with no doctors visits!  From being "behind" on every milestone to 70 - 75th percentiles for both height and weight and being an EARLY reader!  This kid is bright...she just gets it!

We celebrated at the Mall of America - shopping, the Crayola Experience and of course, Ice Cream cake when we got home!!  What a fun day for a special girl!  Here are some highlights from the big day and the last few weeks.

Never misses an airplane - and she's taught her baby sister to spot them too!!

Very pleased with her "Snackin' Sara" birthday present - basically she eats playdoh and poops it into a diaper, seriously!!

First day / Last day of preschool!

Future doctor?  In high heels and leg warmers?!?!?!

Excited to get a hug from a "real" princess

5 years old!  Takes up a whole hand to show her age now!!

May...and a note about healthcare

May has been busy with preschool, swimming lessons, gymnastics and playing outside now that the weather is nicer!

I don't pretend to be super engaged in politics but I can't help but jot a note about healthcare reform here.  It SCARES me to think about bringing back limitations to coverage for pre-existing conditions and to allow states to impose an annual or lifetime max on a patient.  Without good (albeit expensive) health care for Lucy over these years, we would be literally broke.  We have spent tens of thousands of dollars out of pocket since Lucy's birth, but her costs have been in the MILLIONS of dollars for doctors, hospital fees, surgeries, medical supplies, etc. over the past 5 years and Lucy has a LIFE LONG condition that is no fault of her own - she was born with it and there isn't even enough funding for research to figure out if it is a genetic condition that has a cure beyond a lifetime of treatment.

I need to be constantly reminded that it is all about God's plan, not man's.  We will be OK, no matter what.  Matthew 6:26 - Look at the birds of the air; they do not sow or reap or store away in barns, and yet your Heavenly Father feeds then.  Are you not much more valuable than they?

April

Ready for gymnastics

How is April done?  At least it's feeling like Spring!

Lucy has been doing great.  She is getting so grown up, so brave, so independent.  I love it and am anxious about it all in one.  I know that she will be an amazing person as she grows up, but I also know life will be difficult for her at times, and that will be hard to watch as a parent.  I won't be able to stand at the bottom of the slide and encourage her to go down all by herself forever...and I know she's only 4...but man, these past 4 years have gone so fast!

April brought Easter, Swimming AND Gymnastics, Lucy's first haircut by someone besides me, a trip to Virginia to celebrate Jason's very prestigious induction into the VA Chapter of the National Wrestling Hall of Fame, a trip to the ocean, 3 nights in a hotel (with Grandpa and Grandma to boot!), and a trip to Colonial Williamsburg as well two nights sleeping at her Virginia cousins' house AND a trip to her GI doc and many walks to the park!  No wonder it took me a few extra days to post an update!!

As for the GI doctor, he is very pleased with her progress and doesn't think she needs any maintenance drugs for any acidity in her system or to keep her "regular."  He basically said if he sees us 2x a year - once for a dilation and once because she's sick and her system needs some help to get kick started - consider ourselves lucky - for all the trauma her system has been through, it has healed itself remarkably well!

Here are some highlights from our April:

Easter at Grandma and Grandpa's

She won't be able to hold her for long!!

VERY brave to climb up by herself and go down this slide at Como playground - there were a TON of kids!