Yes, five weeks have passed since I've posted. I'm so sorry. This was not my original intention. I have had so much I've wanted to share, but time has just not permitted me to sit down and write posts. I also confess that before surgery, I did not FULLY comprehend the emotions of a parent as they witness their child's suffering. I knew it was going to be difficult, but I am now convinced there is nothing that can prepare you for the shock of helplessness you feel. I honestly do not know how folks can go through times like this without relying on God. Emotionally, I was neither able to sit and write about what Ashley was experiencing, nor did I have the desire. In fact, before surgery, Ashley had made her dad promise that he would document as much of the hospital events as possible on video so she could view them afterwards. Well, that too never materialized. We actually tried, but something just seemed incredibly wrong trying to videotape her as therapists tried working with her physically deplete little body.
For the sake of others who have found this blog who are undergoing a similar surgery, or perhaps the same, we do want to document some of the things Ashley has experienced physically over these past 5 weeks
Ashley was finally discharged on Monday, June 4th, one day later than Dr. Hey had originally planned. Not because anything went awry, but more because Ashley did not satisfactorily complete her therapy until late in the day on Sunday. This had nothing to do with her back or something surgical but probably more to do with her lingering response to anesthesia and inability to stabilize her system as quickly as some folks. Everyone differs in this area. Her nausea, dizziness, and orthostatic issues just took a little longer to start behaving. Some of this because she pretty much was refusing to eat or drink anything until Sunday late morning when she saw she was not going to be discharged until something changed. She finally accepted a Boost nutritional shake and then ate a little lunch. By that afternoon, she was finally able to complete the final phase of her physical and occupational therapy which included training her how to maneuver steps and also how to get in and out of a vehicle, etc.
As far as the ride home, which was about 1-1/2 hours, it went smoother than we had anticipated. The nurse knew what she was doing...she timed it just right with Ashley's medication administration and off we went. We were very apprehensive when we left the hospital. Her medications were drastically reduced, but I have to say they knew what they were doing because she had no problems adjusting. Yes, it was painful, but the medications provided enough relief that she could do her bathroom trips, required walking, and allowed her to sleep for short intervals of time without needing to be turned. While in the hospital, she wanted to be turned and repositioned no less than every 15-20 minutes, at first it was sometimes even more than this. The nurses at Duke Raleigh were incredible. They are so well trained and knowledgeable and deal with these patients on a daily basis. They have a really great understanding of the medications and how the different types work in conjunction with one another and how to stagger them to give the patient the most benefit. Ashley found that the IV anti-inflammatory med and the muscle relaxers provided her more relief than the actual heavy narcotics. Still, the nurses with their extensive experience from the very beginning set up a staggered plan of giving the different types so that she had good coverage. I cannot say that there were times Ashley was writhing in pain. If she was, she wasn't letting it show. I know she had pain, but please don't picture it as not being able to get relief. It would be insane to think that with this type of surgery there is not going to be some real pain, but Ashley will tell you that the suffering she experienced was well worth the end result. She was and continues to be so incredibly strong and brave.
After getting home, the turning and repositioning was still about every 30 minutes, sometimes every 15 minutes, but after a day, it stretched out to about every 45 minutes to an hour.
As an extra help, we implemented walkie talkie radios. When she wanted to be turned or needed anything, and we were not in her room, she would simply call us on those. She loved this...still does!!
Don't take it personally if your loved one is very cranky. That's all I will say about that...I love you Brooke! I never took it personally. My mind would just flash back to the hours of waiting to finally see her and the x-ray image Dr. Hey provided us after surgery...2 rods, 22 screws and 13-level fusion. This was definitely not about me! I prayed many times over the past weeks that God would allow me to take her place. Just hearing her murmur under her breath for God to help her and hearing her say, "This too shall pass," and "There will be better days" just about broke my heart. Actually, I'm certain what I felt was a broken heart, but I can sit here tonight and say that God has been faithful to heal it, just as He has Ashley Brooke's body. Johnny tells people that he is a different man than he was prior to May 31st, and I am certain I know what he means.
One symptom Ashley experienced was muscle cramping of her right upper leg, mostly the outer thigh. It became so severe, she eventually tried to avoid being rolled to that side. We asked if this was normal, and were assured it was. We found that ice packs helped this. Also, she has diminished sensation to the skin of her upper legs and buttocks. This too is normal and people recover this sensation at varying degrees of time. She just stated yesterday that it has improved quite a bit.
Her limitations were and still are that she cannot bend at the waist or twist her torso. She pretty much needs to go no further forward than a 90-degree angle with her body. Because of all the muscles and tendons and stuff being cut in the upper part of her back, she had difficulty using her arms and her shoudlers at first, but this is lessening with time. She has a lifting restriction of 10 pounds. She still has to have help getting up from a lying position. Walking is extremely important and she tries to walk some every hour.
Each week she has made great strides. Week 3 brought issues of TMJ (temporomandibular joint disorder) with her jaw locking, probably from a number of factors. People with TMJ almost always have issues with extended changes in posture and positioning of their head. Also, she started having ocular migraines for the first time in her life. These could have been triggered by the TMJ. She's now been headache free for over 2 weeks. Thank you, Lord!! There were little things here and there that popped up that we've just had to deal with, but overall her recovery has been very smooth. It's not something that happens overnight, but I will tell you if you are reading this and are in the midst of recovering from this surgery or have a loved one recovering and are wondering if there are better days...I can assure you, there are!! This is not to encourage you not to report symptoms to your surgeon. I'm simply sharing our experiences. In fact, for about 3 weeks straight, I called our surgeon's office at least once a week with questions. So, please, don't take this as medical advice because that is not my intent.
For the first 2 weeks she could only sit straight at 90 degrees for about 10 minutes, long enough to eat a meal. This has gradually increased week by week and by week 4, she pretty much could sit up to her sitting limit of 1 hour. Week 4 she returned to church but only for the morning service. Tomorrow, which will be week 5, she is planning to attend Sunday school and service. Not being able to attend church services and youth events have probably been the things Ashley has missed the most. For a typical teen, you would think it would be missing out on summer activities of swimming and hanging with friends, but not Ashley. She has missed church events and her church family more than anything.
God has been so good and so faithful. These past five weeks have not been without suffering. Quite honestly, that first week brought a lot of fear and doubt to our minds. Ashley was so far removed physically from the vibrant, outgoing 17-year-old she had been prior to May 31st, it at times seemed impossible that she would ever be physically strong again. During her hospital stay, I had tried to remain in God's word and study, but it seemed as if I were just staring at blank pages. I really can't explain it fully. The concentration was not there. Yet, at the same time, I felt a sense of incredible strength. My emotions felt like they could break down at any moment and just lose it, but my heart and mind were in an agreement that would not allow it. I knew my daughter needed me to be strong, and I can attest to the fact that God gave me that strength. It was quite supernatural.
When we returned home, that's when the enemy and my emotions attacked, perhaps because of physical and mental fatigue. As I would kneel at her bed and try to pray, all I could see were flashbacks of my signing the consent for the surgery. I was responsible for my daughter's suffering. Folks, I am no Bible scholar, and my verse memorization should and could be so much stronger, but there were times that without what verses I did know and understand, I may have really lost it. It was only by God's grace, mercy and His Word that I was able to fight the battle that ensued. The Sunday after we returned home, during what would be our normal church time, Ashley was resting and Johnny was in the den, so I took God's Word and went out on the back deck. It was a gloriously beautiful day, before this heatwave set in. My study that morning was John 17. Of all passages, God brings me to the very prayer of my Savior for Himself, his disciples, and all believers. There is something about this passage that will quickly bring things into perspective when we face earthly trials that we think are just too much. Knowing full well the torture and suffering which was about to take place, I was on His mind. Ashley Brooke Taylor was on His mind. And there it was, in black and white, laid right before my eyes, the verse that literally popped off the page and into my heart, spoken by the Savior Himself, verse 23, "I in them, and You in Me; that they may be made perfect in one, and that the world may know that You have sent Me, and have loved them as You have loved Me. God loves Ashley just as He loved Christ!
Have you ever read a passage and felt like you were taken to the wood shed yet at the same time, were blessed beyond measure. That's how I felt that morning. I had been wanting to have my pity party and feel abandoned. But, God met with me when I needed it the most and gave me just what I needed. It's not always what we might want. Our selfishness often times causes us to crave selfish help and sometimes even pull verses out of their intended context and meaning for mere self motivational purposes. God didn't promise me in His Word that there would be no more suffering or trials and that life would be a bed of roses from here on out. No, what I got was a good reminder of the suffering and betrayal my Savior endured on my behalf. I'm so thankful He's blessed me with the life of Ashley Brooke Taylor, and I know that although she will face more trials in this life, she has a very, very promising hope because folks, God LOVES her just as He LOVES Christ!!! I pray that our lives will daily demonstrate God's love and what He has done for our family. He is SOOO GOOD!
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