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