Esophagus Dilatation #22

Melts my heart when she wants to hold my hand when she's "feeling kinda yucky"

Lucy's latest dilatation this week went pretty well.  The doc said that he could still get his scope through (a size "10"), but it was tight.  He dilated her back to a 15 and spent some extra time keeping the inflated balloon in her esophagus to get some extra tissue breakdown.  He's comfortable waiting 5 or 6 months until the next one (and so are we) in the hopes that eventually we can stretch it out enough not to require so much maintenance.

Her recovery was rough - it look her a few hours once we got home to stop throwing up but once she got the medicine out of her system, around dinnertime, she perked up.  She even felt good enough to see Great Grandma DeVries on Tuesday, who was visiting from Wisconsin this week!  She was very brave at the doctor and continued to show us what a strong, special girl she is!!

Four generations!

Meanwhile...we are preparing for Lucys' 3rd birthday next weekend...how did this sweet, sweet girl get to be so big????

Esophagus Dilatation #21

Post-surgery recovery - still pretty out of it

 Thursday's endoscopy and dilatation went great!

Although the doctor was running about an hour late (Ugh - since we have to be there 1 1/2 hours before her procedure - that's a 2 1/2 hour wait before we even get her to the OR!), the day went pretty well.  They were able to dilate her esophagus to about a 15 (so around 5mm, I guess), which is the widest it has EVER been.  Prior to the procedure, we really didn't see any new eating issues so we are going to stretch them out (no pun intended) even further than our current every 3 months to 4 or 4 1/2 months - isn't that great?!?!

She did throw up a few times right before and after the procedure, but after a 3 hour nap when we got home, the anesthesia seemed to wear off to the point she was feeling good (and asking for dill pickles and chocolate chip cookies to eat!)  It's possible that she has developed a slight reaction to anesthesia now or that the stuff they use at the U is slightly different than at Children's, so I'll have to do some medical records research to see if I can find out what might be different.

I mentioned in my last blog that I was anxious about this procedure, so I was so, so happy to wake up on Friday and have Lucy be back to her normal happy (sometimes hyper!) self.  What an amazing, strong little girl...we just love her to pieces!

Recovering with a little Tea Party at home

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!!