Home, sweet Home!

It's amazing how good it feels to be home after being cooped up in a hospital for 4 days!

On Friday, we had a "wait and see" day at the hospital, the doctors had us meet with a few other teams just in case it wasn't an issue of needing to get her GI system on track, but something else...so we met with Neurology to review the results of a "Quick MRI" that they performed and checked her shunt settings - all looked fine.  We also met with the nephrology team - basically kidney specialists, in case you haven't heard that term (I hadn't before last week).  There was a concern that Lucy's blood pressure had been quite high while we were there - 130s over high 90s consistently, so sometimes the kidneys are the root of blood pressure issues.  In addition, Lucy had a heart ECHO to verify no new cardiology issues presented themselves since our last visit.  All checked out OK with nothing pointing to being the root cause of her issues...so we were back to the waiting game and trying to figure out how to stop the throwing up and getting her GI system to move again!  Throughout the course of the day, her blood pressure did come down to 110s of 70s on it's own (it surprised me to the point that I asked the nurse to recheck it..haha!!)


On Friday evening, they placed an NG tube down Lucy's nose directly to her stomach so they could pump a slow and steady dose of laxative into her stomach with the hope that it would get into her intestines and start the flush out her system.  After it was placed, she threw up one additional time, but then slept all night, until 4 am vitals were checked on Saturday morning.

During the 4 am vital check, we discovered that the laxative was working and her system was, in fact, moving again!  Never been so happy to see poop in my life!  We spent most of the morning in and out of the bathroom, as you can imagine but Lucy was feeling much, much better.  She had an orange popsicle for breakfast (the first "food" she had been able to keep down since Sunday, basically!) and was in good spirits when the doctors came by for rounds around 10:30 in the morning.  I was VERY pleased to hear that she could possibly go home by Saturday afternoon if she kept some food down and her system kept moving.

Being the complete rockstar that she is, she kept all her food down like a champ and we got discharged around 4:30 in the afternoon on Saturday.  What an awesome feeling to be back home!  Lucy was very happy to see all her toys and her own bed and comfort item (as was I!)

We spent today (Sunday) recovering and trying to keep things low-key...long naps, simple meals and catching up on life in general.  When an unexpected hospitalization happens, basically your life stops...you don't check the mail, or clean the house or do laundry or pay bills and have any idea what day / time it is.  I didn't even venture out of Lucy's room for most of her stay, until she was feeling better because I am her main comfort item - waking up without mama there would be traumatic for her in that situation...I got 1 shower in at the hospital and makeup and nice clothes weren't even a consideration - why bother then some type of bodily fluid would end up on them within minutes?

As always in these situations, some people in our lives really stepped up to show us their love.  Jason had to go to Iowa for part of the time (her hospitalizations always seem to coincide with a work trip for him...some are skip-able, but some, like this one, are not).  So, my parents made the trek down, brought their dog and a few extra clothes to our house and came and kept me company at the hospital for 3 days.  They cleaned our house - which we left in a bit of chaos, did laundry, brought me orange juice and homemade scones, made lunch runs to Davannis and helped distract Lucy so I could grab a shower or talk with the doctors.  My sister, Melisa, came down and left her toddler (FOR THE FIRST TIME OVERNIGHT!) and helped us get our stuff together to get discharged on Saturday; she brought games for Lucy and snacks for me and helped me get re-organized at home once we arrived.  What a wonderful blessing to have a support system like that to help take care of us so we can take care of Lucy in these times!

Feeling good enough to venture to the window with Grandma

Grandpa's turn to watch the traffic with our patient!

...and of course a HUGE thanks to all who reached out when you heard the news - your Facebook messages, texts, emails and phone calls are so appreciated and knowing that I could call on many of you to help with whatever we need is awesome!  We rejoice in the family and friends that we have here in Minnesota!  Ecclesiastes 4: 9 - 10: "Two are better than one, because they have a good return for their labor; if either of them falls down, one can help the other up."

I kept another throw-up / medication board for the staff...you can tell we tried a lot of things!)

3 Years Home!

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

It is a joyous night in our house as we celebrate the 3rd anniversary of when Lucy came home from the hospital.  What a remarkable little girl we have.  It's been a wonderful 3 years, but especially uplifting in the past 12 months as Lucy recovered from having her feeding tube removed, made great strides in her overall eating and started preschool!

I am humbled at the plan GOD has laid out for our family and how we have been able to witness His blessings and healing in Lucy's life.

Meanwhile...Lucy's latest MRI was traumatic for her (as you can expect!).  They do a "Quick-Brain" MRI to evaluate her shunt performance, which required Lucy to be in the MRI "tunnel" for 10 or so minutes while they took a series of pictures.  She was NOT a fan!  If you've ever been in an MRI machine you know that it is tiny, bright and loud.  Lucy was strapped down with a blanket tightly around her arms and mid section and she had a strap around her head keeping that still.  I was able to be in the room with her and hold her legs/tummy and sing at the top of my lungs to TRY to keep her calm.  She did quite a bit of moving and wanted to be ALL DONE, but in the end, they got the pictures that she needed, so that's a relief!!  She even played "MRI" at home that night and put her teddy bear in a makeshift tunnel and role-played...it was pretty cute in a sad sort of way. :)

The results were very positive.  Her shunt appears to be doing its job and her brain, although still not "normal" looking (it never will be), is healthy and clearly functioning very well.  Her neurologist is happy to report that unless there are issues, she doesn't need another MRI for 2 years - YAY!  (Maybe she will have forgotten about this one by then?)  Lucy impressed him with her ability to read "Medtronic" on one of the tools in his office...since I work there she sees that word a lot. HAHA!!

Thanks to all for your continued interest and support in Lucy's journey.  She is such an amazing kiddo!  Here are a few pics of what we've been up to this fall:

Celebrating sweet cousin Dawson's first birthday, you know in our costumes, next to a turtle!

Ready for hockey season (this is what happens when mom gets busy at work and daddy takes Lucy to Target!)

Playing in the leaves!!