10 years!

 

It has been a WHILE since we posted a blog.  I thought that Lucy's 10th year was a great reason to dust off the blog and document some updates.

For one, how is she 10?  Some of the events of her traumatic diagnosis, NICU stay and early struggles are so fresh in my mind while others are a fuzzy memory.  Her first 10 years have been SO, SO hard as a parent but like most difficult things in life they have taught us so much about ourselves and those we surround ourselves with.

When Lucy was tiny, and really up until about 4 years ago our main focus areas for her were her health because she had so many repeat procedures, hospital stays and lingering sickness.  After her laryngeal cleft surgery, her recurrent pneumonia was a lot better but she continued to struggle with "CVS" episodes of throwing up, extreme restlessness, lethargy and severe anemia.  Up until the beginning of this year (2022), these episodes continued to plague her monthly.  However after several tests, medication attempts, a variety of doctors and the grace of God, those have stopped.  We are in a season of respite from major health concerns and it is so good for Lucy and for our family.  

When her health challenges were under control for the most part, we worried about her ability to keep up in school, to make friends with peers her age, to be independent.  We celebrated victories along the way but also wondered if she was behind in some way.  I continued to cling to the hope that Romans 12:12 offers, "Be joyful in hope, patient in affliction, faithful in prayer."

Now she is 10.  Her body is strong and capable.  She can play sports, she is keeping up in school,  has friends with common interests.  She is kind and empathetic.  She is creative and funny.  She is amazing.  She is a testament to God's providence in our lives, His healing power, His answers to prayers offered up by our family and friends.

Thanks for hanging with us and supporting us for 10 years!

Surgery Update

Lucy's cleft repair surgery was L-O-N-G (She was scheduled for later in the day, so we were the LAST people in the waiting room, like even the front desk people cleaned up and left) but according to the doc, it went well.  She received 6 stitches in the soft tissue of her throat somewhere that will eventually dissolve and hopefully lead to more successful swallowing for her going forward and less "junk" getting into her lungs.

Her tongue was quite swollen and her throat was quite sore after surgery, so she understandably wasn't too happy.  Since she has a history of respiratory challenges and it was quite late in the evening when she came out of recovery, they decided to send her to the ICU instead of a normal floor just in case she needed extra support.  However, true to form, our rockstar did awesome without oxygen all night and woke up hungry in the morning.  We were able to go home on Friday, which was nice. 

She isn't thrilled to be on a soft food diet, but we are making the best of it with lots of soft fruit, well cooked pasta and grits and are happy to be recovering at home as a family.  I expect a low-key holiday weekend in front of us.

Thank you for your continued prayers and support this week - we felt it!  Keep them coming for long-term success for this surgery!

Romans 12:12 - Be joyful in hope, patient in affliction, faithful in prayer.

Health Catch Up

Lucy has had a good summer, but she has definitely not been 100% from a health perspective.  She's had quite a few throwing up episodes, although not as severe as some in the past.  She had pneumonia again at the end of May and a few other respiratory infections.  I asked to have her blood levels retested based on her lack of energy and we found her hemoglobin was quite low again (7.8 - should be 10+), so she was severely anemic and needed a blood transfusion in the middle of August.

Her most urgent medical need right now is that she has a laryngeal cleft - basically where her vocal chords and larynx meet up and should close when she swallows, they don't close, so she slowly aspirates liquid into her lungs.  The theory is that all that gunk builds up in her lungs and causes ongoing infection, irritation and sickness.  This has been present since birth, but not an issue when originally diagnosed since she had a feeding tube.  In the midst of switching care providers, it was re-looked at and our current ENT doc thinks it definitely needs to be repaired.

So, today (Thursday) is surgery day.  The stitches each take 20 - 30 minutes and she'll likely need 5+ so it has the potential to be a few hours in surgery, with a 1 - 2 day recovery in the hospital.

We'll keep you posted on how it goes and how recovery and 2nd grade go.  I'm cautiously optimistic she'll be less sick this school year and we are on the path to permanent solutions to some of her complex medical.

Also, please know she really did enjoy summer!  She went to Art and Chemistry camp and NASA Exploration camp.  She made new friends, and went to the lake and Duluth and most exciting of all - Disney World!  She is amazing and strong, even when her body is fighting to stay healthy!

One Month Home

Joy :)

Yesterday marked one month home for Lucy.  It's been wonderful to have a "normal" schedule of work, school and weekends to relax.

Lucy has been feeling good since we've been home - lots of energy, eating well, no throwing up.  We are averaging about one doctor's appointment a week:
 - to check her swallowing functionality (questionable - there may be some aspiration into her lungs - like VERY small amounts, but still a potential factor)
 - To follow-up with GI (uneventful visit - going to try to drop one of her maintenance medications that was supposed to keep her from throwing up...hope it goes well!!)

In the next few weeks, we have hematology (to see why her red blood cells were so low and not reproducing fast enough), a chest CT scan, pulmonology and ENT.  There are also some patient advocacy conversations I'm having with the hospital based on how some things happened during Lucy's hospital stay...oh and of course a pile of bills to review and pay and prescriptions and nebulizers to pick up and administer.  We are down from 7 different medicines when we left the hospital to 3 though, so that's awesome!!

School has been going great - she's happy to be back and her class is happy to have her back full-time.  HUGE plug for the Mounds View School district - they have been so amazing to work with during all of Lucy's health issues.

We feel a little bit like we missed the Christmas season this year.  We bought and wrapped gifts (thanks mom for wrapping 90% of our gifts :)), sent the majority of our Christmas cards out and spent time with friends and family, but it honestly took most of our holiday break to unpack, finish laundry and mentally recover from the ordeal that is 2 months of sickness and 10 days in the hospital.

Thank You so much for the gifts, care packages, thoughts, prayers, phone calls, text messages, meals and love you sent us - it was felt and appreciated!

HOME!

Happy to be heading home!

I couldn't be more thrilled to report that we are HOME SWEET HOME tonight.  We were released around 2 pm this afternoon and were met with a house full of loving extended family members when we got home.  All 4 of us are so happy to be under one roof again after 10 days in the hospital.

Please continue to pray for Lucy's health as we have several new nebulizers for her to use at home and a few weeks of antibiotics in front of us and of course still aren't sure what causes these throwing up episodes.  I can't even tell you guys what a champ she is during hospital stays.  Of course, she has her moments of tears and impatience...but overall, she did such a good job.  Many times, nurses asked how old she was and were surprised / impressed that she is only 6.  Her vocabulary, wit and composure are well beyond her years.

I will continue to keep everyone updated over the next several weeks as we anticipate CT scans, swallow studies and a likely surgery to deal with the pouch and laryngeal cleft that were found during Lucy's broncoscopy.

For now, we will enjoy the last few days until Christmas and be joyful in the hope of full healing for Lucy. 

Romans 12:12:  Be joyful in hope, patient in affliction, faithful in prayer.

Day 9 in the Hospital

Smiling after receiving a gift basket.

So I am writing yet another post from the hospital.  I really can't believe it's been 9 days here.  Time has a way of escaping you when you're stuck in a tiny hospital room.  At least Jason and I can get out - Lucy hasn't left this room except via wheelchair a few times for procedures.

Today was a long day of waiting.  Lucy didn't throw up overnight and just a couple of times when she woke up this morning.  She had a little bit of an appetite today but not much.  She continues to get some IV fluids but it's been turned way down.  Unfortunately her IV has been bothering her lately, which usually means it's no good anymore and she is still getting anti-nausea and acid blockers through her IV...so we'll see how tonight / tomorrow goes from that perspective.

 - With some digging on my part, we were able to get the health records from Lucy's original discharge from the hospital in Denver, when she was 4 months old.  In addition, I provided info about a broncoscopy that she had done 5 years ago.  After reviewing the records, it was discovered that the existence of the "pouch" was known back then, but no further action was taken as it was evaluated to not be an issue.  In addition, pulmonology believes that Lucy may aspirate when she has these severe vomiting episodes and / or have a slight laryngeal cleft (that is an abnormal opening between the larynx and the esophagus through which food and liquid can pass through the larynx into the lungs).  After we are discharged, we will likely have a CT scan and possibly a Swallow Study to confirm / rule out these.  Overall - more information about possibilities, but no clear path forward.  We understand now that there is not a magic bullet that will solve everything.  We need to take steps to understand each component of her anatomy and determine it's impact on her overall health

 - We had a neurology consult to determine if they thought her vomiting was neurological in nature - they did not (after an 8 minute eval...so you know, not super thorough)

 - GI has NOT been back today to help us understand potential reasons for her frequent throwing up yesterday.  It's probably the most frustrating part of this hospitalization and the largest remaining mystery to Lucy's health with no answers.  I'm not sure what the path forward is for this right now.

So, hoping that Lucy has another great night and her IV is either still OK or deemed unnecessary.  Her blood pressure was down most of today but has been creeping up tonight so I am also hopeful that resolves overnight and isn't an indication that something else will go wrong.  Again, we are so ready to go home.  I think we have learned all we can from this hospitalization and are ready to resume the search for second opinions and manage this outpatient for awhile.

Still hopeful we'll be HOME FOR CHRISTMAS!  Thanks everyone for the support and the special cards and gifts that have been arriving for Lucy and our family - they are truly day brighteners in an otherwise dreary week.

Adding to our wall of brightness in Lucy's hospital room

Still here...

Lucy is frustrated by all the finger pokes and bandaids she has to endure!

At the end of yesterday, we were cautiously optimistic that we would be released today.  But, when the nurses were taking Lucy's 4 am vitals, I noticed she was super restless and moaning a little in her sleep - I had a feeling in the pit of my stomach that it was only a matter of time until she threw up.  Unfortunately, I was right.  Between 5:30 this morning and 5:30 this evening, she threw up 18 times!

The only good thing about this is that we were able to capture the FIRST throw up, which I proceeded to guard with my life so no one would flush it.  I requested that all doctors and nurses take a look at it and tell us WHY it looked like that.  I'll spare you the description because it's gross.  Bottom line - no one had ever seen throw up like that before.  SERIOUSLY!  So, we wait again to figure out what is causing such severe throwing up, how we can control it and why her stomach contents look like that.

And of course, because of the throwing up, she was given an MRI to check her shunt.  She also had chest and abdomen  X-rays, to check on her pneumonia and for a possible intestinal blockage.  We are awaiting results (so I 'm expecting them not to find anything or they would have told us by now).

Lucy hasn't been throwing up tonight so I'm hoping this continues and she feels a little better tomorrow.  We know from past experiences that she likely won't have an appetite for a day or two after she's done throwing up.

Today was the day I lost my patience.  Everything seemed harder than it needed to be (and trust me, a week in the hospital is hard enough!!) and nothing was coordinated - 2 blood draws, 2 trips to X-Ray, No Neurosurgery consult before sending us down for tests, etc. etc. etc.  I am tired of being here and watching Lucy suffer.  I try to be a well-educated parent and advocate for her, but when I have to explain to a doctor why I think X test is more appropriate than Y test, it makes me a little crazy.  I realize doctors are specialists in their areas and she has a lot of different specialists, but it's exhausting to always be mentally plugged into conversations and decisions made about Lucy's health and challenge residents and doctors when I think they might make a different decision if they had additional information that I only I can give them.  Basically, Jason and I know the full picture.  No one else does.  I wouldn't have it any other way though - I would do pretty much ANYTHING for this girl.  (Rant OVER!)

Still confident we will be HOME FOR CHRISTMAS!  Thanks all for your prayers and support.

Procedure Day

Asleep, clutching her new Troll doll that has been such a comfort this week

Lucy was able to get her procedures done this morning at 7 am - it was an early day for all of us!  Here is what we found out:

- Upper Endoscopy:

  - Her esophagus was nice and open and didn't need a dilation - YAY - it's been 18 months since her last one, so that's awesome

  - The scope showed no visible signs of tears or ulcers, so the blood presence in her stool, vomit and low hemoglobin are still a mystery.  We will continue to monitor her blood numbers over the next few weeks and also hope that her new supplement helps keep the throwing up at bay.


 - Broncoscopy:

 - The pulmonologist came out to the waiting room and said, "Your daughter's anatomy is very interesting..." We have heard that before about her heart - things are just a little differently placed in Lucy than in many other people.

 - A typical trachea branches into a "V" at go to each lung.  Lucy's is more like a "U" and has a small pouch at the place where the trachea branches out.  This means secretions, mucus, bacteria, etc. could be hanging out there and continuously infecting her lungs.  This is very atypical anatomy so our doctor needs to review the pictures with colleagues to determine best next steps.  It could have been formed when her initial repair was done, or slowly developed over time.

 - Her Trachea towards the bottom is not staying open properly when breathing and coughing, making it VERY difficult to fully clear her airways, again allowing bacteria and mucous to hang out and leading to frequent lung infections.  We will be taking home some new medicine and breathing treatments to hopefully help this.

So, we have some answers and feel very grateful that we were able to get these procedures done and have so much information.  Next steps are still a little hazy, so praying for wisdom for all involved to make the right decisions for Lucy's long-term health.

Lucy had a good day after she recovered from anesthesia...waking up was a little rough, but once we got to the room and was able to eat, she was much happier.  She is back on a little bit of oxygen after all that lung scoping, but hoping overnight / tomorrow that isn't required.  She got some mail today and fun homemade cards that we hung up in her room to liven it up a little - it really cheered her up!

...a note about the picture at the top of this page.  Lucy was given this Troll doll when we first arrived at the ER (Guy Diamond is his name if you don't know the Trolls movie).  He has been present for every procedure she's had and even came down to surgery with us this morning.  I brought some of her favorite Stuffed Animals from home but she ONLY wants Guy Diamond...it's very sweet and I'm happy she has found something to cling to when she's frightened.  She's never been a kid who has a special blanket or animal so it's nice to see she can find comfort in a small gift like that now.

THANK YOU all for your thoughts and prayers.  We feel them.  We appreciate you all.  We are all mentally exhausted after a L-O-N-G week here at the hospital and are ready to be together as a family to celebrate what is left of the Christmas season!

Postponed

Happy to be out of bed and exercising her creativity

So...I was hoping to have an update today based on what the scopes showed...but they didn't happen.  As I said before, hospitals run on their own time and schedules and today that didn't work in our favor.  I could spend several paragraphs here ranting about how frustrated and disappointed we were at the lack of communication and schedule change and Lucy not being able to eat all day for NO REASON, but I think you can imagine all of those feelings.

Overall, Lucy has a good day, she is needing less oxygen support, her hemoglobin was down slightly, but basically the same and not a huge concern.  Scopes have been rescheduled for tomorrow morning.

Thank you to everyone who prayed for us today and reached out - please do it again tomorrow!  Wisdom and safety for all involved and comfort for Lucy who is so sick and tired of being sick and tired.

As usual, she spend part of the day on arts and crafts and made me this awesome picture - LOVE HER!

Day 5 in the hospital

Enjoying a few hours of freedom, gazing out the window with Grandma and Grandpa

Here is the quick update on today:

 - Lucy's hemoglobin was UP on it's own today - from 10.0 to 11.0 - YAY!

 - Lucy was off oxygen intermittently all day today - she needed some support at various times but overall her stats looked good all day

 - New week means new doctors are rounding, so her new pulmonologist suggested a nebulizer every 4 hours to help keep airways clear and open

 - Her IV that was put in on Thursday failed (her hand / arm were starting to get puffy), so that was removed and Lucy enjoyed a few hours of freedom with no oxygen and no IV to roam around the room and sit somewhere other than her bed.  It was replaced this evening since she will need it for surgery tomorrow and for some IV antibiotics she is getting and minor hydration

 - She ate really good today again and was SUPER excited that Grandma and Grandpa brought Chick-Fil-A for lunch (I'm not going to pretend I wasn't excited too!!)

 - We did about 100 craft projects, wore matching Christmas socks and I introduced her to the movie Elf...we are feeling a little bored!!

Tomorrow will be a rough day as she won't be able to eat all day since she is going under anesthesia in the afternoon to have her broncoscopy and upper endoscopy done.  Since we are a "fit in" to the schedule and we need pulmonology and GI to coordinate schedules and ORs, it will likely happen in the afternoon.

We would so appreciate it if you can cover Lucy and the doctors and nurses in prayers tomorrow - for wisdom and safety for all involved.

I hope I have good news to share tomorrow after her scopes and some definite next steps to get her towards full healing.

We are still confident we will break out of here BEFORE CHRISTMAS!

Day 4 in the hospital

Today was a very low-key day, focused on eating, drinking and reducing oxygen needs and IV fluids.  I think we accomplished all of that and Lucy also got a bath (sort of...) which I was way more thrilled about than she was.

Also, I am happy to report that yesterday's blood transfusion was successful - increasing her hemoglobin from a 6 to a 10 and contributing to her feeling and acting much more like herself today.  She is off of high flow oxygen and on a small amount through a nose cannula.  We will try to turn it off overnight while she is sleeping and see how she does.

Her coughing fits have reduced in number and severity but she still has some chest congestion, obviously.  She had a good appetite and makes all the doctor's mouths water when the come in for morning rounds because she orders hash browns every morning!

Assuming she continues to improve over the next day 24 to 36 hours, we will likely have an upper endoscopy and broncoscopy done on Tuesday to see if we can isolate the location of the GI bleed and check for anatomy irregularities that might be contributing to her frequent pneumonia.  Did I already tell you that?  I can't remember!!

Our focus at this point is obviously getting Lucy healthy, but I would like to mention, for the record that we have questioned Lucy's symptoms and in some cases, requested these very tests in the recent weeks from her care team and have been told they are not necessary.  So, it's frustrating as a parent and health care consumer to have to advocate so fiercely for something and end up in the hospital getting the very thing we requested, but now is not the time to focus on that...it's time to focus on getting Lucy healthy and trusting we are in the hands of good doctors who care about her health.

Tonight we continue to be patient and faithful and continue to pray that we will be HOME FOR CHRISTMAS!

Day 3 in the Hospital

A picture from before the hospital...Ruby can be a real sweetheart to Lucy when she's sick, but she is ready to have her fun sissy back!!

I can't believe it is only Day 3 of this hospital stay...Hospitals really warp your sense of time, weather, emotions, etc.  Lucy had a pretty good day, considering.  Here is what we know:

1. Sepsis - under control.  Her fever is being controlled by Tylenol / Ibuprofen, her heart and respiratory rates are lower than when we arrived and she is being hydrated both orally and through IV fluids

2. Pneumonia - still requiring a fair amount of oxygen to keep blood oxygen up (90+ is acceptable, prefer 95+), getting double dose of antibiotics and keeping fever controlled.  She has had a few coughing episodes and coughed up some pretty thick mucus from her lungs, but none have been as bad as last night when we needed the rapid response team, thankfully!

3. Hemoglobin - this is the big mystery for this visit.  If you've followed Lucy's story, you know that there is always at least one puzzling piece to Lucy's hospital visit.  Doctors are not sure why her hemoglobin dropped so quickly to the point she did require a blood transfusion today.  They gave her 2 separate units of blood over 8 hours (the second is still finishing up as I type this).  The strongest theory is that there is a bleed somewhere in her GI tract - in her esophagus, stomach or intestines.  The cause, severity and solution is completely unknown at this point.  However, they cannot scope her to investigate under the pneumonia is more controlled and her hemoglobin is higher and within a more normal range.

So...we wait.

Lucy is in OK spirits - in classic Lucy style today, while the lab tech was drawing blood for MORE tests (one of her least favorite parts of hospital visits), she was in the midst of crying and yelling that she would like to go home and she stopped, looked at him and told him he was doing a good job.  He said that people rarely compliment him on his work as he pokes people all day with needles, so it was the sweetest thing he's heard in awhile.  Seriously, she is so HIGH on the empathy scale, even when she is so sick.  What a sweetheart.  Be aware that she also asked the nurse if she was being poisoned by getting liquid starch instead of medicine (we use liquid starch to make slime at home and apparently one of the medicines reminded Lucy of starch...was was quite concerned for a bit).  She also told everyone who entered the room that she wanted ONLY her mom in the room and no one else today.  It feels good to be a hero in someones eyes :)

It was nice to have a a low-key day today, but it made us realize this isn't a quick in and out visit.  Lucy has some serious issues going on that we need to get to the bottom of so she can get back to her fun-loving, happy self.  Ruby asks where sissy is and checks her room just in case...she missed her big sister but we don't plan to take her to the hospital due to all the germs!!!

I have claimed Romans 12:12 as my verse for Lucy...it gets me through the tough days.  Romans 12:12 says, "Be joyful in hope, patient in affliction, faithful in prayer." We have had many many months in a row of joyful hope for the person God is shaping Lucy to be.  Now it is a time to be patient and faithful as we figure out next steps to get her back to healthy.

It's been a rough 2 months!

At least she is still smiling for the camera...

I have not updated lately, not because it hasn't been eventful or I haven't had anything to write about, but because quite the opposite - since October 18, Lucy has been very, very sick.  I'll do a quick outline here and then dive into the current state:

October 18 - 30 - Severe episode of throwing up, started on the Thursday morning, while she was at the neighborhood Montessori school (her school was off for MEA) and then escalated to around the clock throwing up.  I took her to the ER the following Tuesday (I think), where they gave her the customary fluids, MRI (in case of shunt issues) and chest X-Ray, which showed lung cloudiness - likely pneumonia.  They sent us home with a double dose of antibiotics (like 2 different ones) and she slowly recovered at home.  She felt good enough to go to her school Halloween party and Trick or Treating, which was great - we were in the hospital 4 years ago on Halloween, I didn't want a repeat.

Halloween 2018

November 9 - 13 - Another severe episode of throwing up, started on the Friday morning at home, but she felt OK after that...however she threw up at school after lunch and continued throughout the weekend.  This was a quick episode and she was able to be back at school for a few days before Thanksgiving break. 

 - We happened to have a visit with pulmonology  already scheduled for that week (despite her recent pneumonia, decision was no change to current protocol, keep up with inhaler and add "cupping back pats" 1x / day or more as needed - the goal was for this to help clear her lungs.  Pulmonologist acknowledged she has persistent cloudiness on the right side of her lungs). 

 - We also had a pre-planned visit with GI. The GI doctor said she may have something called "Cyclical Vomiting Syndrome," which is really an absence of a diagnosis when no other reason for repeat throwing up can be found.  He ordered future labs for when her next episode started...we didn't have to wait long

November 25 - November 30 - Another episode of throwing up, started on the Sunday morning (I think - they all tend to blend together!) and lasted throughout the week.  She was able to go to ONE day of school on Monday, December 3rd when episode 4 started...We had the labs run and received many test results with no definitive answers.  Areas of concern were high white blood cells, low hemoglobin and low carnitine (related to metabolism).  GI suggested we try a supplement to help with the low carnitine.

December 4 - 7 - Another episode of throwing up, started on the Tuesday morning (middle of the night, really) and lasted throughout the week.  By Saturday, she was not throwing up, but had spiked a fever.  Meanwhile, Abby desperately emailed and called several of Lucy's care team to request addition tests (e.g. broncoscopy to check for anatomy abnormalities), information, etc.  Nothing new was recommended by doctors.

That brings us to our current situation.  After have a fever, shallow breathing and general not feeling well for several days, Jason and I took Lucy to her primary care doctor on Thursday, where we were quickly administered Tylenol and a nebulizer due to fever and low oxygen saturation.  Unfortunately, these treatments were unable to improve Lucy's saturation so we were advised to go to the ER...IMMEDIATELY.

We stopped at home for some clothes and to say bye to Grandma and Grandpa (who were already there helping...thank goodness!).  Upon arrival at the ER, we were told Lucy met the qualifications of sepsis and were quickly ushered to the most high-tech room of the ER for treatment.  She was given IV and oxygen to get her stabilized and then was admitted to the hospital, where we currently are.

At this moment, we are waiting for her oxygen needs to decrease and her hemoglobin numbers to increase (she is on the border of needing additional red blood cells, so a transfusion).  Doctors are focused on trying to determine why those numbers are so diminished and not being created in her body as quickly as expected.  (If you've read this far...you might see a potential reason...she's been sick for basically 2 months!!!  Her body is completely depleted of reserves and is TIRED!).

A silver lining to this hospitalization is that it forces specialists of different areas to work together to diagnose and plan for Lucy's long-term medical needs.  She is a highly complex kiddo that no doctor has really seen the likes of.  Many have experience with a patient with one of her diagnosis, but not the combination, so partnership is paramount, which Jason and I feel is lacking in her regular out-patient visits.

We continue to advocate for her and are seeking second and sometimes third opinions as we navigate her latest health challenges.  We will keep you posted on how she does at the hospital and I am confident that we will be HOME FOR CHRISTMAS.

Update on 2018...so far

I cannot believe that this is my first post in 2018!  That should tell you that Lucy is doing AWESOME from a health perspective.  So far this year, she has had some pretty high highs and some pretty low lows...I'm confident there were WAY more highs than lows though!!

HIGHS:
 - First Dance Recital
 - First Science Fair
 - Graduated from Kindergarten - how is my baby 6 already???
 - Family vacation to Pennsylvania - including Hershey's Chocolate World and the Turkey Hill Experience - so fun!!
 - Long weekend in Duluth - complete with Thomas the Train and a Water Park!
 - Swimming Lessons
 - Play dates with friends
 - Picnics in the park

LOWS:
 - Pneumonia (in June) :( (but a high point that we were able to treat at home and did not have GI issues with it!!)
 - 25+ missed days of school due to illness (2017 - 2018 school year)
 - Schoolwork challenges
 - Still a lot of doctor's appointments
 - A new doctor to follow-up with (pulmonology)
 - Ongoing maintenance medication

I'll post more about the new doctor we are seeing on a future blog.  Wish us luck starting 1st grade in a few weeks!!

First Day / Last Day of Kindergarten

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!!