Wednesday, March 30, 2016

Happy Easter!

Happy Easter!

We had a wonderful Easter, celebrating with some of my family (a little chilly, but that's to be expected in MN for an early Easter!)  Lucy enjoyed the Easter Egg Hunt and making Easter-themed crafts, like the one at the top of this blog.

Found one!

So careful in her Easter Dress!!

With her cousins!
Lucy is feeling much, much better.  Much of her first few weeks home were just taking it easy, monitoring her diet and bathroom habits and judging how much laxative to give her. It took a good week for her and I to feel "normal" again, I think.  We've definitely had some setbacks in the potty training (which she was totally done with prior to this!) and the sleeping through the night department since the hospital stay, but it seems to be gradually getting better.

She had a doctor follow-up about 10 days after discharge and our pediatrician was pleased with her progress.  The big question that nobody can really answer is if it will happen again - next time she gets the stomach flu...which she inevitably will!  So...this is a time to wait and see and trust in God's ultimate plan for our little girl.  We have some ideas from a diet perspective that we can try to prevent this again in the future, so we'll see!

Other than that, we've been enjoying the sporadic nice weather in Minnesota, having Jason back in town for a long stretch with no travel and being silly with Lucy - this girl loves to laugh!  This week is back to preschool and swimming lessons so we've got a pretty tired girl at night as she adjusts back to a regular schedule.

I cannot leave her alone with my makeup for a MINUTE!!!!
Thanks again for your thoughts and prayers as we navigate the latest issue with Lucy's health.  We appreciate the support!






Sunday, March 13, 2016

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!)

Friday, March 11, 2016

Back in the hospital...



Wasn't I just writing on my last blog how thrilled we were that Lucy's hadn't been to the hospital for such a long time or even to the doctor?

Well, she got the stomach flu over the weekend and her little body is just unable to heal itself, unfortunately.  She started throwing up on Sunday night...seemed better on Monday and Tuesday, but then started throwing up again on Tuesday night - often...like every 30 to 60 minutes.  So we brought her to the ER, where she got fluids and was pretty quickly admitted to the Fairview U of M Children's Hospital.  We are still here trying to coax her digestive system to work again!  If on a normal day it's moving at a pace of 10, hers is running at a pace of 1, so everything is taken a LOT LONGER to work its way from her stomach to her intestines and finally out of her body.  Because of this, she can basically not keep anything down and her stomach and esophagus are both very irritated.

It's a very similar situation to when she had her feeding tube out, but this time she hasn't eaten anything since Sunday, so it's very difficult to kick start it.  She's very weak and a lot of the anti-nausea medicine she's getting makes her drowsy, so she's just a shadow of my happy, fun little girl right now.

I'd love to post some positive news about when she'll get better, but really do not have an ETA on that right now...but I'll keep you updated.

Prayers welcome, as always...for healing for miss Lucy and prayers of thankfulness for the wonderful facility we are in, with warm, caring physicians and nurses and people who donate stuffed animals and pillowcases for the kiddos who have to stay here to make things a little more comfortable.  And of course, for family and friends and co-workers who have heard the news and offer kind words of encouragement and offers for any kind of help that we need.  We couldn't get through these tough days without their support!