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!)

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!!