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!