A trip to the ER, but no hospitalization this time!!!

Lucy Sleeping on my lap while we were waiting in the ER

So we managed to avoid an in-patient hospital stay this time!  Here is a rundown of the latest issues Lucy had experienced:

 - Started throwing up Monday night - no indication she was unwell before that
 - We gave her a suppository and laxative at home (she threw up the laxative)
 - She was feeling much better by Tuesday afternoon
 - After an overnight at my parent's for Thanksgiving on Thursday, Lucy started throwing up again on Friday evening
 - We managed it at home with the same routine as Monday, but she wasn't able to keep any food down and very little water and Pedialyte; her throwing up decreased to a few times a day (instead of several)
 - I called her pediatrician, GI and Neuro docs on Monday and the general consensus was that it is a GI issue, but she should be taken in JUST IN CASE it isn't; GI wouldn't give any prescriptions for gut motility over the phone until she was seen in the ER
 - On Tuesday night, we put Ruby to bed and left her in my parent's care at our house and took Lucy to the ER where she had an abdominal X-Ray and an quick shunt series MRI...both looked fine and we were happy that she wasn't dehydrated enough to require an IV or admittance to the hospital.  We took her home with a prescription for Zofran (anti-nausea) and another call into the GI
 - On Wednesday, her GI docs prescribed a motility medicine for her to be taken daily
 - By Thursday, she was feeling better and eating some and on Friday she went to school for a few hours!
 - Now, she has insatiable hunger and is constantly wanting snacks, haha!

So, the 6 day cycle seems to reign true...it takes a while for her body to start "moving" again, but once it does, she is good to go.  We will continue her on daily laxative and motility medications for the foreseeable future.

We are THRILLED that we could treat her at home, but it was a tough week for all of us!!  It's hard to deal with the fact that we couldn't go on a field trip to the Crayola experience because Lucy was sick or that we couldn't decorate for Christmas like we planned because we wanted Lucy to participate when she could help decorate the tree, or that Lucy had to miss almost a full week of school and is sad when she has to go back because she wants to stay close to home, or that Ruby doesn't get to play with her big sister because she is too weak to get off the coach.  In spite of how proud we are of Lucy and her strides, these times of sickness are very difficult for our family, so we appreciate the prayers and kind words of encouragement from those of you who know about these episodes.

Prayers for continued PERMANENT healing for Lucy's GI issues are appreciated.

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!

March

Dress Up is a frequent occurrence in our house!

We are doing well!  Keeping germs away, washing our hands a lot, staying pretty isolated but enjoying some glimpses of warm weather and a fun baby who is changing every day!

March brought the 5 year anniversary of when we found out about Lucy's hydrocephalus diagnosis...I can't believe it.  How anxious and sad at times we were thinking about how hard life could be for her but how excited we were for a new baby at the same time.  Fast Forward 5 years - Lucy is exceeding all expectations.  She is reading, like legit reading road signs, books, anything she can basically read.  It's crazy for a 4 1/2 year old!!  She is doing great in preschool - playing with friends, eating school snacks (and lunch sometimes!), learning new songs and skills and all around growing up!  We are working on her focus and paying attention for longer stretches of time, but she is READY for Kindergarten in the fall!

We have not had any doctor appointments lately, but have a GI appointment scheduled for April to talk about ongoing laxatives and Acid Reducing medicines she might need.As of now, we are just doing a daily vitamin, and sneaking in some prunes, chia seeds a kefir to keep up digestion and overall gut health.

Jason travels a LOT at the end of February and March, so me and the girls get lots of fun together time.  I try to be creative with how I entertain us all!  Here are some highlights from March:

Lucy and I had a slumber party on the Living Room floor one night (I'm getting a bit old to sleep on the floor all night, haha!)

Lucy is playing "jaundice" here...complete the the blood pressure cuff and tiny foam glasses she had in the NICU (yes, I keep everything!)

It's been so fun to introduce Ruby to our favorite park!

Lucy and I ventured out with some of my friends and their little girls to the theater...Lucy even brought her puppies!

One Month Home

Swimming lessons!  She loves "earning" her goggles every week by putting her face in the water.

We've been home from the hospital for a month!!

Lucy is doing very well compared to a month ago.  Her happy demeanor is definitely back.  Her stomach issues are probably about 70% better.  She still needs a laxative and protonix (acid reducer) a few times a week to keep bloating / stomachaches away and stay regular and she throws up randomly (which completely freaks me out because I am convinced she'll be back in the hospital!).

We've been trying to keep the girls isolated, so have let Lucy go to preschool, swimming lessons and one birthday party...so far they've stayed healthy but we are getting a little bit of cabin fever on the weekends.  If it were up to me, we'd live in a bubble, but that really is no way to live life, so we are trying to balance risk with everyday life.  I figure if anywhere is prone to germs, it's preschool!!

Jumping with daddy at the trampoline park for her friend Cameron's birthday party!

We've also been very rigid about handwashing, eating more fruits and vegetables, experimenting with probiotics and other fermented foods, prunes and a variety of other natural digestive support.  We have a follow-up with her GI doctor in a few weeks!

Other than that, we are busy making Valentines, chasing after a crawling Ruby and enjoying some time outside when the weather permits.

Thanks for your continued support.  We are so thankful to have our little family back together and healthy!!

Celebrating the Superbowl!

Home!

So happy to be able to giggle together again!

We are so happy to report that Lucy was released on Friday evening...it was a bit touch and go before they let us head home as her blood pressure was still quite high and she was throwing up every few hours.  However, we were given the green light and after a 2 1/2 days at home, Lucy is very close to her previous self.  At first, she was complaining about her stomach hurting quite a bit, but as we got her system used to food again, that seems to have stopped for the most part.  She is on laxatives for a while, so we have some work to do to get all of her system working at the correct pace again.

Nearly every single medical professional that met Lucy told her how brave she was and what a great patient she is...now I'm sure they tell most kids her age that, but she seriously is the best!  She's definitely a mind over matter kind of kiddo, so once she knows she has to do something like take a med or get a nebulizer she sets her mind to it and just gets it done.  What a rock star!

She spent a good part of yesterday and today begging for food that I wouldn't let her eat, like BBQ potato chips, ice cream, milk on her cereal and Chick-Fil-A. Basically, I made her eat dry cereal, crackers, applesauce and water.  :)

I feel like we lost the first week of the year!  Again, all things go on hold when a kiddo is in the hospital...so we spent the weekend enjoying extra cuddles while trying to cook some normal meals, do laundry and organize the house a little bit.  As you know, it was especially difficult to leave Ruby at home, since she is still so little and really expects mommy to be around.  In the past, I've been able to spend 100% of the time with Lucy in the hospital, but this time I had to split my time between home and the hospital, so that was tough on both of us.

Thanks again for your support!  We appreciate it so much.  This episode has reinforced for us that Lucy's body cannot handle illnesses like others can, so we definitely anticipate this will not be the last time we'll be in this situation and I'm doing lots of research on how we can change our lifestyle, diet and other habits to help prevent this as much as possible.

On the Mend

Lucy has made great strides in getting better over the past 2 days.  She is totally off of oxygen support and therefore her sweet little face is no longer hidden under tape and nasal cannulas!

She continues to throw up a few times a day, but her system is slowly moving things out the other end as well (enough said!).  Today was the first day she felt like getting out of bed and having me read to her and look out the window with her...we saw a lot of birds, buses and people running in the COLD weather to get to their cars!  She is eating a little bit and was thrilled with the dinner we ordered at the hospital of rice noodles (one of her favorites!) and orange jello cubes.

I am anticipating that she will be home in the next few says and can't wait to have all my family under one roof again.  I cannot begin to tell you how lonely it is not to have miss Lucy at home.  Before bed, I just walk into her room which is perfectly neat but SO empty and it makes my heart hurt to know she's at the hospital instead of in her bed, cozy with her stuffed animal friends, snoring her little snore so I know she is safe.

Thank You for your prayers!  We are blessed to know such great, caring people.  I hope my next post is about Lucy at home!!

P.S. Ruby is doing all right too...she has an ear infection and is generally pretty fussy but is getting lots of cuddles from us whenever we can.  She misses her big sister so much but was very happy to be able to Face Time with her yesterday!

Out of ICU

Lucy's RSV and pneumonia are clearly up nicely.  She is on a much lower flow of oxygen (4 - 6 liters, vs the 10 - 15 from yesterday) and the oxygen level has been turned down to 21("room air")- 35 throughout the day, versus the 50 - 60 from yesterday.  So, we are feeling very happy about that!

However, her GI system continues to be slow to get started.  After 36 hours on a slow drip of the mix they give to people before having a colonoscopy, things are finally slowing starting to move, but she is still throwing up every hour or so.  It's a tough balance to give her enough to get her intestines moving and not giving her so much that her stomach just rejects it and she throws up.  They have also made several attempts to get things going from the other end...enough said.

Because her oxygen needs have gone down so significantly, she was able to move out of the ICU down to a regular room today...I was a little sad about leaving the awesome ICU nurses and one of my favorite doctors to date...but it IS a step in the right direction for Lucy, so that is what counts.  She has definitely pepped up a little and even asked me to tell her a story today, one of her favorite things from mom or dad.

As always, we've had many friends, family, and awesome nanny and neighbors step up to help with errands, laundry, watching Ruby, and providing food for us.  SO THANKFUL!  Without all this help, we would be lost, with a house fill of dirty clothes, nothing to eat in the fridge and a much less-cuddled baby.

Thank you for your continued support, prayers and messages - we so appreciate them!

Ending 2016 and Beginning 2017...In the Hospital

We did not have a very good end to 2016.  Lucy contracted RSV (and possible pneumonia - we are waiting for the cultures to come back) and was admitted to the hospital on Friday night (12/30).  She is in the Pediatric ICU for now.

So far, she is being treated for a respiratory infection with steroids, antibiotics and a LOT of breathing support (oxygen and nebulizers).  Of course, her little GI system is shutting down again, so she has had a lot of throwing up since Friday during the day.  She's gotten the standard NG tube to her stomach with a low dose laxative going into it, an enema and basically no food or drink by mouth since we've gotten here.  While her lungs are slowly improving, her energy level is not so the docs are doing more tests tonight to understand if she needs a different type of breathing treatment to help with CO2 levels.   She is pretty lethargic and is sleeping most of the day away (after being awake most of last night throwing up - not a fun way to ring in the new year.  I could here the midnight fireworks going off as I was holding a puke bucket for her in her hospital room!).  As of now, we have no idea when she'll turn the corner, or even a really clear picture of how and when she will improve.

Please pray for healing for miss Lucy...we miss our ray of sunshine so much; it's so difficult to see her like this (again!).

When we decided to have another baby, one of my main concerns is who would take care of the baby when I had to be at the hospital with Lucy - because I knew it was inevitable that she would eventually be back in the hospital.  That part is a huge struggle for me - not being able to be with baby Ruby in the middle of the night and barely seeing her during the day...also she is battling a cold / ear infection so is pretty miserable herself.  It's also been hard to let go of being in a little hospital bubble with Lucy and having to leave her at the hospital with Jason or my parents so I can take care of Ruby and myself for a few hours.  So, prayers for all of us as we get through this tough emotional and physical challenge.

We choose to believe in God's greater plan and to continue to pray through the challenges and will keep you updated on her progress.  Thank you so much for your calls, texts and messages - they mean the world to us!