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! :)