Healing

We have been home from the hospital with Lucy for a week now.  I for one, am feeling MUCH better than I was a week ago!  Life has returned to normal for the most part.  Jason and I are thrilled that we don't have to change leaky dressings anymore and Lucy is getting used to her new, flat tummy! She pulls up her shirt often and looks at the scar and says, "No more Tubie?!?"

She is doing great - if I hadn't witnessed the entire hospital stay, I never would have guessed how sick she was last week.  It is amazing how quickly the body can right itself when something is wrong.  I cannot help but go to Psalm 139 at this time and remember what it says in verse 14: "I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well."  

Here are a few things that I learned or was reminded of last week:

 - Doctors do NOT know everything.  We heard from doctor after doctor theory after theory about what might be wrong with Lucy.  When we were discharged, we were told so many times that they cannot believe her recovery and still do not know what caused her to be so sick.  It's tough to take as a patient, because we do expect doctors to know what is wrong and FIX US!!

 - Doctors have a distinct advantage over patients and their families due to sleep alone.  In the hospital, nurses typically come in every 4 hours to check vitals, lab techs come in before 6 am to get blood so docs have results before morning rounds and residents come to the room shortly after that.  Also, when Lucy was throwing up every hour, I would wake up for that!! While Lucy slept through some of the conversations, I could not!! As a parent, sleeping on a vinyl hospital couch, all of these things happen right around the time you are FINALLY drifting off to sleep.  If you try to catch a quick nap at any point during the day, or grab a shower, the doctors are magically notified and come to update you on something.  By the end of a week in the hospital, I considered Jason's white tee-shirts dressy enough to wear for the day and decided washing my hair in the sink with hospital soap was probably all the hygiene I needed to get me through...I was looking a little rough, to say the least!! :)

 - My friends and family are AH-MAZE-ING!  I am still overwhelmed with the calls, emails, notes, care packages, gift cards and prayers that people sent.  It is tough to give myself permission to take care of myself when Lucy is so sick, so these things literally get me through the day.  THANK YOU from the bottom of my heart - I love you all!

 - Without faith, I would be broken.  Jason and I need to stay positive during these situations and cannot let ourselves think worst case scenarios.  However, there was a brief moment when I wondered if I would ever get my little Lucy back or if something really bad had happened in surgery that would impact her life forever.  The first night after her surgery, before we were admitted to the hospital, I slept on the floor of her nursery and prayed my heart out to God to restore her health.  I could only sleep when I pictured a Guardian Angel standing over her crib protecting her while I slept.  It was as if God told me to rest because He was watching over her.  One night in the hospital after several throw-ups, Lucy and I sat on the couch and we prayed "Dear Jesus, No more throwing up, please. Amen."  I promise you that He gave her a long spell of relief after that sweet, sweet prayer.

 - I was reminded again of how resilient Lucy is.  What an amazing child who has the ability to charm the pants off any medical staff within a 50 foot radius, even when she can barely talk.  When she was having various procedures done, like tubes put in and taken out, I would hold her and tell her how brave she was, over and over.  Before long, she would say it with me, "mama's brave girl, mama's brave girl."  Heartbreaking, really...

Uffta - that got a little bit raw, not my intention at the beginning of this post.  Now that we are home we are enjoying winter, which came over the weekend to Minnesota - not sure I'm ready for this yet!!

Home, Sweet Home!

A picture from Monday, when she was feeling good enough to play :)

After what can only be called a miraculous recovery, Lucy is home!  She was discharged last night and the three of us could not be happier!

The doctors are still stumped as to why she was so sick and why she got so much better without too much intervention on their part (actually, she got better when they STOPPED messing with her). Her recovery really started in earnest on Sunday night, after she had an enema (sorry, honey!!) to clear things out of her intestines and had the feeding tube removed from her nose (it was looped through itself a few times and part of it was looped in her lower esophagus, so must have been very irritating to her).  She had a good night on Sunday and then very slowly started perking up on Monday and began eating somewhat normally on Tuesday.

This is Lucy's "Throw Up" board that I kept for the docs and nurses at the hospital

Today, she is a little slow and still somewhat off balance but otherwise is back to herself.  SO HAPPY!

As always, thank you for your continued interest and encouragement throughout this journey.  Your calls, emails and texts mean a TON to me and Jason and we appreciate them so much.  And a special shout out to mom and dad for coming down to stay at our house and clean and do dishes and keep me company at the hospital so Jason could go to Philly for a work trip (at least he wasn't gone the whole time this time!!)

I'll write more later about how she's doing now that she is home and fill you in on some of the details of the last week later on.

Stumping the doctors is not a good thing

So we are still at the hospital - no trick or treating for little Lucy! :(

The doctors are somewhat baffled as to the issue.  Thankfully, she has stopped throwing up so much, due to a combination of medications and a venting tube placed into her stomach.  Yesterday, it was only 2 times that were not due to other irritants (coughing fits or docs trying to put another tube down her throat).  The have placed an "NJ" tube through her nose, bypassing the stomach and sitting at the top of the small intestines.  The goal is to get food in her that will not be thrown up and get her digestive track moving again, in the hopes that any pressure, etc. left over from anesthesia and surgery will dissipate.

It is possible that having a G-tube for long masked (or created) a different problem related to her stomach emptying into her small intestines which could require a surgical repair (Gastroparesis).  So really a lot of theories but no solid diagnosis. :( The waiting is difficult, to say the least and she is still very lethargic - basically moves from the bed to my lap and back.

We will keep you posted as we know more.

Thank You for your continued prayers.  I'll leave you with a throwback photo from last Halloween :)

Back at the hospital

At least she LOOKS relaxed when she is sleeping.

Lucy did have her endoscopy and feeding tube removed on Tuesday - she's all stitched this time, so NO LEAKING!  However, she has had persistent vomiting since we took her home on Tuesday afternoon, so we packed her up on Wednesday morning to go BACK to the hospital and will remain here until they can figure out the issue.

She is not responding to anti-nausea medicine very well (so far today she has thrown up 17 times) and doctors are stumped as to the root cause of the problem.  We've had a battery of tests to try to determine the problem but far everything has come out OK.  She is obviously very tired and weak and is on IV fluids since nothing stays in her tummy for more than a few minutes.

It's pretty rough to see her so listless and uninterested in life with no clear path as to how and when she'll be back to normal. :(  Prayers for all of us and for wisdom for the doctors to help us clear this last hurdle!

I'll keep you posted on her progress.

2nd Opinion

Sporting a birthday crown she decorated at ECFE's 40th birthday party!

Wow!  This week we celebrated Lucy's 2-year anniversary of being home from the hospital!  What a difference 2 years makes!  She has been feeling great and has tons of energy to use up running around the house, the yard, the neighbors yard, etc.!

Taking Lucy home 2 years ago!!

Cake and markers - not enough hands!!

 We also had our 2nd opinion visit to talk about removing Lucy's feeding tube.  So glad we pursued finding a new doctor!  Her previous GI doctors were a referral from our pediatrician at Children's Hospital, but they are not actually a part of Children's. However, the surgical team IS a part of Children's.  It is pretty clear that for a patient like Lucy, we need serious coordination between the GI doctors and the the surgeons which we NEVER had before.  As Lucy's advocates, we definitely could have (and probably should have) pushed harder to get the two groups to coordinate, but until the disaster that was her feeding tube removal, things were OK so we didn't feel a strong need.  Now that we understand what can happen, the right decision for us, was to find someplace that has tighter coordination.

This week, we saw a GI doctor at the University of Minnesota and while we was talking to us, he said that he thought a surgeon was rounding in that clinic today, so we invited the surgeon in to have a look and said they would talk about Lucy's case at their next joint meeting!!!  What a change from the previous GI doctor, who told us to "call the surgeon because there is nothing else I can do."  UGH!  Overall, the visit went great and they had some long-term options for us to consider if on-going dilatations do not seem to be working for Lucy.  So, we are having her next endoscopy performed at the U of M this week with possible G-tube removal and site CLOSURE if the surgeon thinks it is possible to do as outpatient.  Oh, and do you remember back when Lucy was in Denver and we considered transferring her to MN?  This surgeon is the same one that would have performed her original surgery if we had actually been able to make that transfer happen, so I was already familiar with him and his work (arguably, one of the best in the country and well-known in this field).  Feeling God's guiding hand and infinite wisdom in this 2nd opinion!!

Prayers are welcome and we seek to be patient and understand what's next in this journey.  I am hopeful that in the next post I will be able to share with you that Lucy's feeding tube is OUT FOR GOOD!  But it not, I am confident that this new team will help us get there when the time is right.

My view when taking Lucy for a walk!

Fall Fun!

 

Fall in Minnesota has been gorgeous this year!  We have been able to enjoy lots of outside time on the weekends and even visited a pumpkin patch with Grandma and Grandpa this weekend!  (In case you are wondering, the super cute Candy Corn hat was made by my very talented sister, Jenny.  We get tons of people telling us how cute it is! :))

We were so excited to meet my sister, Melisa's new baby Dawson this weekend, too!  He is beyond sweet and makes Lucy look like such a big girl!  Lucy is no longer the youngest cousin/grandkid on my side of the family, but I think she like baby Dawson!!

This week, we (finally!) have our 2nd opinion visit at the University of Minnesota and are looking forward to moving forward!  I'll post about the outcomes as soon as we know something.

October will be a better month...

Love her curls!

It has been over a month since Lucy got her feeding tube out (and subsequently put BACK in...UGH!).  I would say she is fully recovered - it took several weeks for her skin to get back to pre-leaking condition and for her to allow us to change her dressing without saying, "No, No, No!"  Her digestive system was completely screwed up for a few weeks as well, but she is finally back to normal eating...and all that goes along with that.  Her mood is also back to her standard, sunny self.  For several weeks, she was not very agreeable with ANYTHING we suggested - partly from being given everything she wanted for a few weeks, just to keep her mind off of her pain and partly from still being in pain for awhile, I think.

We have an appointment with the pediatric gastroenterology department at the University of Minnesota in 2 weeks and an appointment for her regular dilatation at the end of the month (but NOT with her previous GI doctor - one of his colleagues).  So, we are really back to the waiting game, focusing on healing, getting over bitterness (me, not Lucy:)) and making a go-forward plan for getting Lucy's tube out once and for all!.

Lucy has been talking up a storm, practicing her counting, meeting new friends at her ECFE music class, building forts, collecting leaves, learning to do "chores" (she is a big fan of setting the table - most thing end up spilled somewhere between the counter and the table, but it's a start!) and getting outside when it's not rainy or too cold.  She even spent 2 nights with just daddy while I went out-of-town on a work trip.  What a big girl!!

iPad time in her fort

Layers of pink and purple to fend off the fall chill at the playground

Peek-a-Boo!  Can you see Lucy?

Thank you for your continued prayers and interest in Lucy's journey.  She's a very special little girl! :)