Hope's daddy has been leading our family in studying through James chapter 1 as we prepare for next Monday. It has been great comfort to us and equipping of our resolve to trust and obey God, whether we "want" His plan or not. We want to "want" His plan, but we are 3 yr olds seeing what we can only see and asking for what we can only desire in our human mama and papa hearts. . . healing of our sweet girlie so she can avoid having this permanent and painful surgery! But as we do, we are trusting that He will answer in HIS great wisdom and purpose, and that He will, as our Heavenly Father (who loves her so much more than we ever could!), accomplish His perfect plan and will for Hope's life. So, we will keep asking for healing! Even as our precious Hope leaves our sight next Monday morning, we will continue to pray and ask for healing! Trev mentioned this past week that God could even wait until they've cut open her back and then He could straighten her spine, rib cage, and pelvis right in front of their eyes! Our God can! We believe it whole-heartedly, and we think that would be awesome!!!
And if He has a different plan and as the surgery continues, we will trust that His healing will come in other answers. . . how straight they will get her back, whether she will walk again (even against the odds), how quickly and well she will recover, how much pain she will be in, and many more ways that we trust and believe God will continue to work in Hope's life, and most importantly work in Hope's heart and the hearts of many others, who like you, are a part of her journey! So thank you to everyone who is humbly and boldly continuing to pray for Hope's healing in the form of avoiding back surgery! Don't stop! We're doing the same! But let's also pray for healing in the way of changed hearts and lives! And as God reveals His story and plan for Hope's life, let's continue to pray for healing in whatever ways He chooses for the good of those called according to HIS purposes, and most importantly for His glory!
So here are some specifics on the surgery, along with specific prayer needs . . .
We will not get her surgery time until this Friday, however, we have been told to expect to have her at the hospital around 6:30 am on Monday morning. The surgery will be between 6-10 hours long, and is considered a full day procedure. We will have a liaison nurse that will come out every couple hours or so to give us an update.
Hope is going to be fused from the base of her neck all the way to the bottom of her spine and then from her spine to her pelvis. They will be using a hook and screw hardware for immobilizing her pelvis, and additional rods (2 long, and 1 short) for stabilizing her spine especially while her back heals but will provide some support thereafter as well. Hope will have two huge screws placed in her hips that will protrude quite significantly and can be a future source of skin breakdown. Due to the great pressure on the rods and hardware from Hope's dystonic muscles that are receiving faulty messages from the brain, there is risk of the rods breaking and not being able to do their job. In order to initiate fusion of the vertebrae of the spine, the spinal process (or the ends of the vertebrae which are the little bumps that you feel down the centre of your back) will be cut off of each vertebrae, and as they destroy the joint mechanism between each vertebrae, they will use these pieces of bone to put in between each vertebrae, which as it heals will cause the bones to heal to one another and cause complete fusion of the spine and pelvis. The rods and hardware will support the spine and pelvis while this is happening, trying to keep it all in the best position possible. Please pray that this hardware will hold up and not break!
The surgeon is only expecting that he will only be able to correct Hope's significant scoliosis curve from 110 degrees to between 50-60 degrees. This corrected amount of only 50-60 degrees (where they start recommending surgery as the only option for idiopathic scoliosis) is still a significant curve and could mean future revision surgeries will be necessary. The best case scenario for a scoliosis correction would be to be perfectly straight again, but due to Hope's rigidity or stiffness in her spine and the dystonia in her back muscles, this would be considered impossible. Let's pray for the impossible to happen here, too! : ) The surgeon was encouraged by the flexibility of Hope's pelvis still and is hoping for close to perfect straightening of her pelvis. . . she has a 30 degree pelvic obliquity. This is important as this will provide a sturdy and straight foundation for her sitting and standing, and possibly by God's grace and continued healing, walking. Please pray that her pelvis is able to be perfectly straightened too!
Here are some recent pictures of Hope's back showing her scoliosis curve. . .
|Hope and Gabi sitting at the piano together after Gabi's piano recital at the end of May.|
Hope will have screws placed in her knees as they will hook up a traction device from her head to knees to keep tension on her back throughout surgery. This will shorten surgery time and provide the best straightening of her spine. This will be another source of pain after surgery and another set of scars on her body. Hope will also have the incision from the base of her neck to the top of her bum crack, which will be the most significant incision and scar, and pain in healing. However, Hope is not too concerned with scars and rather considers them war wounds with stories! Which is good because she has quite a few already! Please pray for good healing of all these incision sites, as infection is a significant risk for this surgery as well. Hope will receive antibiotics to try to prevent infection, and will need to take them prior to any dental work for next few years.
Hope will have EEG monitoring throughout the surgery. This is a relatively newer technique that allows for closer and constant monitoring of the amplitude of waves from nerve messages. The leads also provide a way for them to periodically send little impulses to her brain and cause extremity movement to ensure that no nerve damage or paralysis is being done as they work around her spinal cord. This monitoring helps guide the surgeon and gives important information on how things are going and if he needs to tread more carefully. Please pray that Hope will be protected from any complications of nerve or spinal cord damage.
Hope remains on an anti-seizure medication and this will be a concern for her as well. She will have her med early Monday am just before we leave for the hospital. But due to the length of the surgery and the effect it is likely to have on her digestive system, they are not sure how soon her stomach will be able to absorb oral medication. . . so she may require IV equivalents, which she has had in the past and they have much worse side effects and were less effective for seizure control. Also the trauma and effects of a long sedation and meds on board her system all lend toward putting Hope at higher risk of having serious seizures (just like the one she had back in May after her hospitalization for serious infection). Please pray that Hope's stomach will start working quickly after surgery so she can continue her oral Trileptal, and that seizures will remain controlled and not cause further complications to her recovery.
Blood loss is also a significant concern during surgery, and dystonic muscles bleed more. So Hope has already been cross-matched for blood transfusions. They will try to collect as much of her blood as possible during surgery and give it back to her. But it is likely that she will require a blood transfusion(s) during or after surgery. We are thankful that they prefer to leave their patients anemic and let the body slowly replenish itself the way that God created it to do. However, if it becomes too much, then she may require blood transfusions. With the issues Hope has had with bleeding in the past (even with normal clotting factors every time!). . . blood blisters and hematomas for example. . . please pray that Hope's bleeding will not be excessive and even that no blood transfusions would be necessary! Hope will require good access for IV meds/treatments during and after surgery, so they are considering a central line to be placed for multiple lines. However, due to Hope's scars and carotid/jugular repair from being on the heart and lung machine, it makes it harder/trickier to get central line placement and the anesthesiologist was unsure as to both what type of central line to place and where to place it. Please pray for wisdom for the doctors in choosing and placing this line or whatever IV access(es) is decided upon! We just got a call late this afternoon that Hope's clotting factors are slightly low and so they are wanting her to have another poke for blood work done to re-check it, so they can make a decision if surgery can go ahead or not. Please keep Hope in prayer for another poke tomorrow morning. . . many tears were shed at this news. . . she is so fearful of pokes! Please also pray for the surgeon to make a wise decision whether surgery should be done based on her blood's clotting time.
Pain control and adequate oxygenation/lung function will be two of the biggest issues for Hope, according to the consult time with the anesthesiologist. They usually do a lumbar puncture at the end of the surgery and administer a dose of Morphine into the intratheccal space to give better pain control for the first 12-18 hours. However, this can also cause more side effects of decreased breathing, oxygen sats, and severe itchiness . . . all of which, Hope has had with Morphine before. There are several ways that they approach pain control such as through patient controlled PCA pumps, and moving to oral narcotics as soon as possible to lessen side effects. However, with Hope's unexplained history of respiratory and cardiac arrest, they are nervous (and so are we!). It is a delicate balance. . . too little pain control will decrease her breathing/oxygenation too, as she would be in excruciating pain! So please pray for wisdom for the anesthetists and pain management team, as they attempt to find the right balance for Hope that will be best for her comfort and recovery! Please pray for adequate pain control. . . this surgery is extremely painful! As her mom, I am very anxious about the pain that she will be in. Please pray for Hope's oxygen levels and breathing to be stable and adequate. Even though in the past, this has been a problem with far less major surgeries, we are asking that God would do a miracle here too!
Hope will be going to the ICU after surgery for at least the first day/night. The anesthesiologist also mentioned the possibility of her coming out of surgery with decreased breathing abilities which would necessitate her remaining on the ventilator under sedation. This is not ideal for a post surgical patient, but if she is not breathing well enough on her own, this may happen. Please pray that she is able to sustain her own breathing needs. Hope will likely be in the hospital for about one week. We will keep you posted as to how things are going and how you can continue to pray for her, throughout her recovery in hospital and then at home, as well.
Hope is supposed to plan to be at home for 2 weeks after her hospital stay, continuing to recover. Then she can start to venture out as she tolerates, for the following 3 weeks. She will be restricted from swimming for at least 3 months. . . she was quite disappointed about this as she loves swimming and had been on restrictions since April already, which was elongated due to her complications in healing. So her awesome daddy has taken the girls swimming 3 times already this past week, and they are currently in the pool one last time, as I finish this post! The surgeon has warned us to expect at least 6 months for a full recovery and before she is able to start doing most of the things that she was able to do prior to surgery. I have heard from others who have had a similar surgery, that it was between 6-12 months before they felt the surgery actually made them better. The recovery time is extensive from such an extensive surgery. It will be even more so for Hope, due to her brain injury! The surgeon explained that she will actually need to relearn how to do the things she has already relearned to do post brain injury, because she is using the wrong muscles (due to her severe scoliosis, twisted ribcage and pelvis) to do things now. After surgery, her brain will need to figure out how to use the right muscles. . . this will make her recovery take even longer than a typical scoliosis surgery. I will try to do a post, maybe even later this week, on the difference Hope's brain injury makes on muscle movement and coordination in accomplishing even the most simple task. It may help those who are still trying to figure out how Hope's scoliosis is SO different in nature and cause than a much more common idiopathic or congenital scoliosis. I think you would find some of what we're even still learning quite interesting! The way that God made our brains work and control the body is fascinating and points to our need to stand in awe and worship of the true Creator!
Finally will you please continue to pray for our hearts, especially Hope's heart, as well as the hearts of those who journey with us, and those that God will continue to use in it, at the hospital and any where else. We just ran into a sweet lady we had never met, but who saw and recognized Hope yesterday morning, and so kindly told us that they were praying. . . it was another reminder of God's care for us through the prayers of so many! Above all else, we desire to see God glorified, and people's hearts turned toward Him, in their need for salvation as well as in adoration and worship!
We are continuing to struggle as this has been a painful decision and step of faith and obedience, rather than a feeling of peace per say. There are moments when Hope is complaining of rib pain that we think with hope that this surgery will resolve that pain. But for the most part, it still "feels" very much like a huge loss and devastation for her and it breaks our hearts. As I said at the beginning, we are praying still for healing for our sweet girl, and yet we are resolved. . . resolved to obey in faith, the leading of our Good Shepherd. It is not the surgeon that we are trusting explicitly. . . we are trusting the God who is over it all and working for His good and perfect will that we are trusting and obeying! I was explaining today to Hope as she expressed some anger at the news that she will need to have another painful blood work poke, that her daddy and I feel like Abraham who was trusting and obeying God to take his son up to the mountain to be laid on an altar and sacrificed. I'm quite sure that Abraham's heart was not "peaceful" as he prepared to leave, made the journey, answered Isaac's questions about what was going on. . . especially as he placed him on the altar and picked up the knife. I am quite sure though that he was resolved to trust and obey God who is always faithful and keeps His promises, even when His ways are not understood! I explained to Hope that we are trusting and obeying God by placing Hope "on the altar" even though we are devastated with her and for her and do not understand His plan in this, but knowing that God loves her even more than we do, and His ways are better than our ways. He will be faithful, He will still be good and we can count on His promises to carry us through whatever is ahead. I listened to the song, "His Grace is Enough" this morning while Trev was out swimming with the girls. . . God's faithfulness and amazing grace ministered to my heart as I cried and grieved a little more what is about to happen. I'm terrified of that day to be quite honest, but I know that He will be holding our hands whether the knife falls or the knife stays. I'm so thankful He understands, He cares, and He comforts! Hope responded to our talk by softening her heart and choosing to dwell on other things than the poke she will get again tomorrow morning. How I treasure that her heart is softened and comforted by God's Word and His truth!
Gabi is doing well! We're thankful for our Gabi girl and how she continues to be flexible and go with the flow through these difficult times for our family. She is still learning much about trusting the Lord. Her prayer life as been increased and fervent for her sister and others over the last while, and she is learning to expand her prayers to include adoration, thanksgiving and confession in addition to her requests. She is striving to stretch herself in being other-centered and serving her sister by including Hope in activities. This can be hard when there are other friends around who want to be playing and doing things that exclude Hope, so we've talked a lot about this. Gabi knows how much it hurts Hope and she is growing in choosing to adjust her play/games to include Hope or to just stop and choose to be with her sister instead. Gabi brought home her reflection journal from her Bible memory verses and this was something we found inside. . .
"To work with all your heart is to work all the way right away with a happy heart. Not just doing it part way, or a quarter of it, but doing it ALL the way. . . I need to work on playing with my sister because sometimes I'm tired and am lazy so I don't feel like playing with her. But I should cause she is stuck in a wheelchair and has no one to play with and is board out of her mind. So I need to step it up."
It is a blessing to see how God continues to grow their friendship and work in their hearts!
Hope is also doing okay. . . she is just as the verse I shared last post (2 Cor 4:8). . . "afflicted but not crushed, perplexed but not driven to despair, persecuted but not forsaken, and struck down but not destroyed." She is sad that this surgery is going to happen if the Lord does not intervene miraculously in the next 6 days. However, she trusts Him completely and is submitted to obey in this step of faith and in accepting this loss, all with the hope of what God will yet do before, in and after surgery! She had made it very clear before that she would rather never walk that have this surgery. . . since being resigned to having this surgery, she is now saying that she wants to walk in her uncle's wedding in August as she will be a junior bridesmaid! That would be a miracle, and you can start praying for God's plan in this desire as well. We are simply encouraged and hopeful that Hope is determined to obey God and move forward with Him in this journey, rather than be overwhelmed with anger and dwell on her disappointment. She is having a hard time trusting the surgeon, particularly that her rib pain will be resolved after surgery. Her rib pain has become more severe and constant, but also is probably because she is being more honest with us now that the surgery decision has been made. Hope has also been growing in her prayer life and learning to include thanksgiving and seeking the Lord for help in her obedience. She has been asking God to help her not to be so demanding and bossy, particularly with Gabi, and to treasure her little sister.
Thank you for continuing to pray for her heart, our hearts, and the hearts of all those who are a part of her journey. . . may God accomplish His desired work in each of our hearts, and be glorified! Thank you for your continued prayers, dear ones!!! We are overwhelmed at God's care for us through the love, care and prayers of so many! You are loved!!!