Wednesday, September 3, 2014

Sept 3, 2014 -- Post Op Day 1

An update on Hope's first post op day. . . 
Let me give you a few updates on her first post op day, as Hope is resting now.  Once she wakes, I'll be busy with helping her, and so I will try to get as much update as I can until then.

Hope's morning was pretty grim.  The epidural has now worn off completely and it started around 5 am, so pain has been intensifying.  Timing was crummy as the night shift finished up and the day shift came on and was full of busyness, and assessments by nurses and doctors.  Hope's pain started to intensify with the epidural wearing off.  However, Acute Pain Service had not made it to see her yet and form a pain management plan, so her pain medication and management was severely lacking and with all the assessments, including a painful one checking out Hope's complaints of numbness and tingling in her legs/arms, Hope became overwhelmed and could no longer cope with the pain.  I tried to support her the best I could to get through what was being asked of her, but she was simply overwhelmed.  Not to mention that she was exhausted from not sleeping all night with blood pressures taken every 10-30 minutes and alarms ringing off each time.  Neither of us slept but a few minutes here and there.  The room was freezing cold, as well, and so we both gave up even trying to sleep.  However, those who don't know Hope, and didn't see how much her grogginess has improved from last night, felt she was getting too much pain medication.  

The ortho surgery residents agreed to come back to complete their unpleasant assessment later today. . . still waiting on that to happen (update. . . the surgeon came by and did his own assessment and Hope has improved so much, that they will not need to do the unpleasant one now!).  Hope stresses every time she hears someone say they are going to do an assessment (which is often) wondering if it's that one. . . poor girlie.  Her morning nurse changed due to an admission to the ICU, and with a different approach, I was able to clear out the room, and let her get some peace and rest while mommy rubbed the muscles that were cramping and limbs that were going numb, and tried my best to help her cope with the pain.  Hope was crying for her daddy to be there. . . daddy is security and mommy is comfort for Hope, and she desperately needed both!  Daddy arrived after dropping off Gabi at school, and that helped as well.  We waited for the ICU doctor rounds to occur and we are praising the Lord for the wonderful ICU doctor who was there and made some excellent discerning decisions on all the issues that Hope was having, including pain control!

These things are still being worked out as Hope's body continues to try to find balance.  Here are some of the major prayer requests. . .

1.  Hope's pain is probably the biggest one.  She has a patient controlled analgesia (PCA) now, which is both a continuous infusion as well as a button that she can push for extra boluses of pain med as she needs.  This allows her to receive extra pain med before painful procedures, painful movement (which is all movement right now), etc.  Her urine output has picked up finally now that she is allowed to drink freely.  So now they will also add in another IV anti-inflammatory pain med to help with all the sources and types of pain.  They also started her on regular doses of Tylenol for pain med that does not sedate her.  Goal is to continue to find the fine line between adequate pain control and over sedation.

2.  Physio is going to be brutal for Hopey for now.  But she got through her first session this afternoon, where she met the surgeon's goal to dangle her feet and sit on the edge of the bed.  It was "hatred" in Hope's words!  She experienced severe dizziness and nausea when the bed was lowered or head of the bed was raised, as well as when she was sat up.  But worst by far, was the extreme pain. . . Hope described it as a burning pain all the way down her left side and into her bum cheek/hip and back of her left upper thigh.  Her back hurt, shoulders hurt, and neck hurt.  Her neck was so rigid and tense, and her eyes were so wide with fear and pain that she gave my heart a bit of panic remembering that look from long ago when she would have the full body spasms and dystonia!  She tolerated just a few seconds of being upright and then we laid her back down, but by the time everything got situated and she was moved into a proper position in the bed, she was done.  She was shivering and experiencing facial twitching. . . all likely stress from extreme pain.  So, we are encouraging her that the first one, usually the most painful, is now behind her, and we'll pray that tomorrow will be a little bit better, and so forth day by day.  It's still going to be painful but at least now she has the worst of the worst, I pray, behind her and can start to feel improvement over time.  Praying the new pain management routine will continue to help things improve as well.  We are going to attempt one more sit on the edge of bed in a few minutes here. . . she's very fearful and teary, so please pray for these times of necessary suffering for Hope.  It's tough on all of us!

Awesome Praises:

1.  So far with blow by oxygen, Hope's sats have stayed fine, so that is a huge praise!

2.  Hope's increased urine output is great news. . . it just needs to keep going that direction!

3.  Hope has been tolerating clear fluids well and has had just a couple bits of nausea today, but no throwing up!  She is going to try some food tonight.  Her GI tract seems to be working again and so that is awesome news!  They are continuing to give her a regular anti-nausea medication to keep her covered.  She has had some heartburn, but was able to settle it with some nibbles of saltine crackers.  Every time Hope has a drink of cold water (and that's a lot of times today!), she says, "Mmmm. . . yummy!"  So cute as to how much one can appreciate a drink of water after being so parched with dry mouth and sore throat from the intubation!

4.  Hope has not had any more vertigo, but she is having a fair amount of dizziness with movement, but this is not unusual.

5.  Hope has not had any seizures!  She does continue to feel like she may have one, and even had a bit of face twitching today after the painful physio sit up at bedside, but we are thankful for now major seizure activity, which she was very prone to with all her body has been through.

6.  The ortho surgeon just came by and did the unpleasant assessment that the residents were going to come and do. . . so it's done (and he did it without the needle poking--sharp and blunt!).  Great news that Hope's right side is starting to move better and with better coordination too.  It's not back to normal, but it's much better than even just a couple hours ago.  She is still complaining of occasional tingling or numbness in her limbs but it is not consistent and so more likely is a positional or pain related thing, rather than spinal cord nerve damage. 

7.  Hope got moved out of the ICU earlier this afternoon, and has had way more rest the last couple hours than all of last night!  Yeah! 

8.  Hope's blood pressure has come up nicely since coming out of the ICU.  The surgeon is pulling back even more on her IV fluids to the bare minimum due to her great drinking today.  She is still quite swollen from head to toe, but prayerfully that will continue to improve as she has limited IV fluids which always make her puff up.  Her face looks pretty puffy right now still, even her arms and especially her legs/feet. 

So that's pretty much a look at Hope's first post op day. . . some huge praises and some big prayer requests too.  We have seen lots of familiar faces here at the hospital which is a joy!  Our current nurse was one of Hope's primary nurses during her long original hospital stay of 5 months, and so we know her well, she knows us well, and we love her dearly. . . she is wonderful, and has done a ton of good for Hope!!!  Hope just tolerated all her IV push meds and another reposition and assessment with no problems, thanks to this wonderful nurse and her wonderful ways!!!  She even got Hope to do some deep breathing with a pinwheel!  : )

Hope's surgeon has been by twice today and we are thankful for his watchful eye on Hope, and his caring heart!  He expressed this morning to us how happy he was in surgery when they attached the rods the first time and were able to straighten out her spine to "really straight!"  However, that excitement was quickly dampened when they lost all spinal monitoring on Hope's spinal nerves.  This means that Hope's spinal cord was not transferring any nerve messages, which equals paralysis!  They immediately started taking off the rods and allowed the spine to relax, but it took 10 mins for the monitoring to show nerve activity again.  Very scary, but praising the Lord that His hand brought back our girlie's nerve transmission to full strength after that period.  So you can imagine why they went for a lesser degree of correction to 35 degrees, in preference over paralysis!  It is a little hard to not feel disappointment that Hope didn't get that full correction, and to start to wonder why our God of wonders, who was and is fully capable chose this circumstance.  However, we have learned and continue to learn, that ours is not to ask, "Why, Lord?" but rather to say, "Yes, Lord!"  And even more, "Thank you, Lord!" for a correction that is still almost half of what we were told was a safe bet!  It is also revealing of our sinful hearts, that even when given an amazing gift, we would see the perspective of wanting more, rather than being thankful for what we have already so graciously been given!  Isn't that so true of pretty much anything that we would want in life in comparison to the treasure of the gospel!  Humbling, convicting, and good for us to be reminded!  The surgeon expressed his own disappointment in not getting to accomplish the best correction (which is an ortho surgeon's goal for every surgery), but balancing it with what was best for Hope (not taking a risk that she will be paralyzed!).  We were able to share our own heart struggle with him, and then how God has brought us to a place of repentance in that and instead great thankfulness!

Thank you, dear ones, for your precious prayers to which our awesome and able God lovingly hears each and every one, and is being faithful in His perfect plan in all of this!  Please do continue to pray for rest for our family. . . Gabs is pretty tired too, with starting school while all this is going on with her family!  Please also continue to pray for the hearts and lives of each person that we come into contact with throughout this journey. . . we so desire to be used of by His grace and for His purpose and Kingdom, that many might come to saving knowledge of Jesus Christ and that many will worship our awesome God, who is so worthy!

Psalm 145:13
"Your kingdom is an everlasting kingdom, and your dominion endures throughout al generations.  [The Lord is faithful in all His words and kind in all His works.]"

What a sweet welcome back to our Unit 4 hospital family!!!  : )




Hopey catching some much needed rest this afternoon once transferred to Unit 4!!!  Thank you Lord for the amazing gift of rest!!!


A quick video of those delightfully precious "I love you's" from my girlie last night. . . hopefully you can hear it, as she has a really soft voice.  She continues to bless us today with lots of sweet words!  Sweet girl!
  https://www.youtube.com/watch?v=etTNtU9B-rc

2 comments:

  1. Oh Heather, your words are so precious, I would love to think my faith and courage would be like yours. We are praying for you all, Hope is an inspiration to us all. God's hug to you....Jan Walker

    ReplyDelete
  2. Hoping and praying with you, I have tears in my eyes many times when I read your posts and esp Hope's poem. Love Yvonne England UK

    ReplyDelete