September 7, 2014 -- Post Op Day 5 -- Improvement!!!

Praising God for overall, a much better day for Hope today! 
She had a decent night's sleep (at least for hospital sleeps, where you are woken every few hours, although our nurses have been wonderful for maximizing her sleep time!).  She slept 1:30-4:30 am, 5:00-7:00 am, and then 8:00-10:00 am.  She was then able to be awake all day, and so is back onto a normal awake/sleep cycle!  Her pain was much better controlled today.  She usually says that she has no pain when lying still in bed, but still has obvious pain on movement or when up in her wheelchair.  Some pain is a good indicator of knowing how much is enough, but still using a lot of the breakthrough pain meds, usually at the highest dose.  So hoping to be able to back down slightly when we go home, as we don't want to risk having any more respiratory arrests at home!  It feels a little scary taking her home on narcotics, as we have not done that since her tonsillectomy, and these are much heavier narcotics than Codeine.  Please pray for her safety at home!

Hope is still not eating great, but drinking adequate.  All day today, she only ate 1-1/2 homemade buns with homemade butter and homemade jam that her Grandma brought for her all.  Thank you Grandma for bringing something that we could get into her!  She was having nausea and stomach pain tonight as well.  I think she is likely constipated and so that will be something to work out tomorrow. . . mommy has a plan!  : )  Please pray for that to go well, and be successful!

Hope was up in her chair for 3 short walks today.  We are going to have to continue to keep shorter and try for more frequent chair times, as she is having a lot of back pain with sitting.  Her neck is still pretty sore, but we are massaging it with an essential oil blend and it seems to be a bit better today, although her neck is still pretty sore.  Hope is turning herself in bed, which is a huge delight for us as we were not sure if she would still be able to do that!  So doing it this early already, is an amazing and thrilling thing.  She has to make sure that her knees are bent when she does turn herself, otherwise it tries to twist her torso, which does not work anymore and gives her back spasms when she does.  But she's a super quick learner and has got it down!  She loves to be able to do things for herself, no matter how small!  : )  Praising God for some early affirmations of gains that Hope can make through having had this surgery!  And please continue to pray for Hope's pain and ability to tolerate being in the wheelchair.  She needs to be able to tolerate at least 45 minutes to make it home from the hospital, and most of her chair times today were less than that.  And she needed to be leaned way back which we cannot do in the van.

They sent her for post op x-rays today, which was quite miserable for her.  This was a surprise for us and so we didn't have her prepared with pain med or emotionally as she is terrified of x-rays with all the painful and bad experiences she has had in the past.  But at least they are now done!  She was quite chatty and smiley the first half of the day, and then after the x-rays, never really came back to that. . . she was pretty sore and just wanted to rest quietly for the most part.  The surgeon did not return the resident's phone call regarding us going home today, and so they took it as his decision for us to stay one more night.  So we are assuming that Hope will be released after he sees the x-rays and checks in on Hope sometime tomorrow.  It will be so very good to go home.  Our family is very tired. . . as I type this post, Gabi just walked out of the bedroom thinking it was morning and time to get ready for school. . . she was quite out of it. . . poor girlie. . . got her tucked back into bed after a little re-orientation with a peek out the window, and at the clock, and then a little cuddle with mom. . . gotta sneak those in there whenever we can, as time flies and soon enough, she won't fit my lap anymore!

It has been very special seeing face after face of precious people that have been a part of Hope's journey in the hospital . . . especially for them to see where God has brought her and for her to meet some of the amazing people He has used in her life throughout this journey!  Many of them have shared with us some of their memories and perspectives of that long 5 months in the hospital, as well as their joy and amazement to see where Hope is at today!  We pray that we can point people to the One who has held Hope in His hand from day 1 and has weaved her hard but amazing story that He continues to write for His good and perfect will and purposes.  I shared with a dear friend who was visiting tonight at the hospital after bringing us a yummy meal. . . "I'm quite sure that more than God will ever care about all the circumstances of our lives, He cares most about our hearts!"  Circumstances of this life are temporary, but our hearts and souls are eternal.  His good and perfect will is to be at work in the hearts of men/women (His creation), so that we might bring Him the glory and worship that He is due, and so that we might walk in faith and personal relationship with Him through Jesus Christ and earn the reward of eternity with Him!  And so, hard circumstances are often the tool that He uses to do His "heart work!"  How I need to grasp that all the more that I might do as 1 Thessalonians 5:16-18 says,

"Rejoice ALWAYS, pray without ceasing, give thanks in ALL circumstances; for this is the will of God is Christ Jesus for you."

And then He will be faithful to do His "heart work" for our eternal good. . . again in 1 Thessalonians 5:23-24, it says,

"Now may the God of peace Himself sanctify you completely, and may your whole spirit and soul and body be kept blameless at the coming of our Lord Jesus Christ.  He who calls you is faithful; He will surely do it."

Thank you for your continued prayers, dear ones!  Lord-willing, I will write another blog post from home tomorrow night. . . well at home with my WHOLE family here with me (after spending the last 3 nights at the hospital, I brought Gabs home tonight to take to school in the am, and then return to the hospital).  You are loved!!!

 

Hope and daddy!  After Trev returned from church, Hope was feeling pretty good and went for her first chair walk with her daddio. Such a sweet smile, as she loves her daddio!  Notice the IV still in her right hand there?!?!  Thought you'd get a kick to hear a little story about it. . . the nurse said her IV could be taken out, and brought in the supplies to do it.  Hope said she would wait for her mommy to come and do it.  But mommy was visiting a sweet friend, and so took too long, according to Hope. . . so as her daddy read to her from her favorite book series, Trev noticed blood. . . Hope had removed her IV herself!!!  They called in the nurse to make sure the catheter was intact and fully removed, and then Hope asked if she could finish it by taking off all the dressing and tape.  The nurse said yes, and Hope immediately grabbed the tape and ripped off the dressing/tape in one big swoop, taking some skin with her, the nurse joked!  She said that the nurses in the hallway heard her ripping it off!  That kid is one tough kid!!!  And did I mention she loves to do things herself!  ; )  After it was done, and there was some blood at the IV site, the nurse asked if Hope would like a bandaid.  Hope replied, "Just bring me a cotton ball."  So the nurse did, and Hope proceeded to hold it on her wrist for what she believed was long enough to stop the bleeding. . . how this child makes us smile!!!

And speaking of children that make you smile. . . our sweet Gabi girl decided to exercise her artistic creativity with ketchup!  She drew this curly locked smiling girl (bearing a ketchupy resemblance to Gabriella, I must say!), on top of mac and cheese!  She brought it out to show to me, and the nurse, I was talking to.  She then took a picture for me to remember her lovely creation before she proceeded to eat it!  Again, I thought you might enjoy this photo and story too!  : )