September 10, 2014 -- Post Op Day 8 -- Brutal Spasms

Thank you so much for all your continued prayers for Hope and our family.  Here is a little update on her first two days at home. . .

It is so good to be home as a family again, especially with this terrible weather and snowstorm (yes, snowstorm in beginning of Sept for all those wondering if they heard right!) we have had this past three days.  I am so thankful that we are not driving to/from the hospital every night/morning.  Gabi had a "snow day" called today and got to stay home, which thrilled her, even though she was all showered and ready to go to school when we received the phone call from the school.

Being home is great, but it has meant more pain for Hope.  The last two days at home, she has continued to have brutal spasms in her shoulders (especially her left one) and back.  She describes them as "feels like someone is stabbing me in the back over and over again!"  Without a stronger breakthrough pain med than Tylenol and Ibuprofen, it has worsened, and so today was worse for spasms than yesterday.  Hope is fearful of all movement as it is not a matter of if she will have a spasm but how many and for how long.  The more tense and upset she is, the worse they are.  She usually screams throughout them, as they are brutally painful.  My mama's heart is crushed for our girlie, during those screams.  Once she settles and the spasms cease, Hope will often sob in my arms, and say, "Please help me mommy, please help me."  It is heart-wrenching!  We are taking it quite easy and are not pushing her to do much of anything.  She stays still in bed as long and as much as possible.  But she does still need to get up to the bathroom.  And we also try to get her up to sit in her reclining chair, once or twice a day to eat.  She does not tolerate very long in the chair, as it is usually worst for the spasms.  But she does need some movement and being upright to stretch out muscles, prevent pneumonia, stimulate bowel movements, and prevent DVT's or blood clots in the legs from immobility.  So we're trying to exercise wisdom in how much is enough without doing too much!

Hope's mornings and evenings are the worst times.  Afternoons usually most comfortable, so we tried the reclining chair mid afternoon, but still Hope had terrible spasms.  Any movement is the culprit.  The spasms are the worst by far, but other things that she is also dealing with are continued constipation and abdominal discomfort, nausea, vertigo, and now today I noticed that her wound is starting to bleed again and has seeped past the edges of her inner gauze lining under the dressing.  So we will need to keep a close eye on her for risk of infection.  We have not bathed her as I know that would be over the top unpleasant and painful for her.  I tried to do a little sponge bath today and change her shirt, and that went very poorly with a severe bout of spasms during and after.  The spasms leave her out of breath, panting and exhausted. . . it is hard to watch.

God has been so gracious to give us several things that do bring comfort, distraction and help Hope cope through the pain.  Hot packs, mommy's voice, music, massage, essential oils, and certain positions have helped to get her to stop screaming, calm herself and breathe, and then her muscles to finally relax.  When Hope is lying still in bed, she is not having any pain. . . this is such a blessing that she does have pain-free periods of time, and allows her to find rest in spite of what will come with the next trip to the bathroom or chair.  She is gobbling up audio books and stories like crazy!  So thankful for what a joy literature brings to her!

We have backed off of aggressive treatment of her constipation as she just can't tolerate much more right now.  So please continue to pray that the Lord will work this out, and give us wisdom for how best to treat it and when.  She is eating better since we came home, and so praying that this will also encourage better bowel health, as the GI tract beings working better.  Sitting up or walking is important towards the improvement of this, and those things are limited for Hope due to both pain and ability right now.  Hope is finding it hard to even stand, saying that her legs feel very weak, as well as the pain in her back when she does.  We have found a few ways to carry and transfer her that have helped limit strain on her back. . . another praise!  They do require both of us being here though and so we are very limited in either of us being able to be away from her for more than a short stint.  Sunday morning, when Trev preaches, will be an unavoidable longer time away.  I have not been able to lift Hope safely by myself, so we are praying that either she will be better by Sunday, or that she will be able to avoid needing the bathroom for the hours that he is away this Sunday.  I will probably keep Gabi at home that morning with me, just in case we have an emergency need for bathroom and have to manage it somehow.  Hope will only let her dad lift her right now, as it hurts too much any other way.  Love how much she trusts her daddy! 

The vertigo is worst either when sitting up or when lying on her left side.  So we are avoiding those positions as much as possible, by keeping her reclined when sitting.  The bathroom is the one exception that is tough to work around, and so she is usually quite dizzy in there or even has a bout of vertigo before making it back to bed.  She also has had more nausea, again worse today than yesterday.  She gagged and almost threw up a few times this morning, but thankfully was able to keep all her meds down.  They sent us home with a prescription for an anti-nausea medication that Hope can have, with no bad side effects, so we are very thankful for that.  After I gave it to her this morning, she did settle and had no further nausea today. . . another praise! 

Everyone in our family is quite tired and spent, so we covet your continued prayers for rest.  God's grace is always sufficient and we really do sense His sustaining grace and mercies through all of this, His comfort, His wisdom, and His love.  We have had some great family conversations with the girls over the last couple days, and times of prayer with them.  We are so thankful that we are learning more about God's purposes through suffering, and our girls are becoming so much more soft-hearted to the suffering of the persecuted church over the last bit.  As Hope was crying and expressing her frustration over the pain and agony of this time for her, we talked about all the people who suffer for Christ, much worse than she is suffering right now, and she was so responsive to seeking God's glory, purpose, and Kingdom through this.  She sang the entire song about the Russian martyr that she has come to love, for some visitors yesterday. . . I know it has impacted her.  I should try to see if she will let me video her singing the song to share with you all!  Sometimes she plays shy!  ; )

Well, I should get to bed.  Thank you for continuing to read our updates on prayer needs, as well as ways that God is answering your prayers!  He is always so worthy of praise, and we do want to take time to praise Him for His goodness and faithfulness through the hard times too! 

Romans 5:1-5
"Therefore, since we have been justified by faith, we have peace with God through our Lord Jesus Christ.  Through Him we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God.  Not ony that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us."

You are very loved, dear ones!!!