Hello dear friends and prayer warriors! I was planning to write this post to tell you that Hope was having surgery today to repair the broken hardware in her back, as well as try to fuse the vertebrae that did not fuse from her previous back surgery. We were eager to have the amazing prayer support of each of you as she faced this. However, the Lord had another plan . . .
I'm so thankful that I can say that, "the Lord had another plan," . . . if it was just my plan interrupted and derailed, then I would be completely frustrated, angry, fearful, anxious, and a whole whack of other emotions! But, when I know the One who is over all things, always powerful and sovereign, and not only that . . . He is lovingly orchestrating all details in life according to what He knows is best . . . that changes everything!
So, here's me finally getting a chance to sit down and give you the scoop on where things are at with Hope's back. A rod broke in her lower back area, earlier this year in January. A pretty major surgery is needed to repair the area of the break, along with some other hardware updates and fixes, and to also fuse the two large vertebrae at the bottom of her spine (L5 and S1) that did not fuse the first time around. They have been slipping and sliding for the last 7 years, and this has resulted in one of the long titanium rods on either side of her spine to snap. Hope had immediate pain and has continued to have pain with all movement, especially when standing up/sitting down, walking, bumping when driving, or even just sitting up in her wheelchair for a while. The worst pain though, has been the spasms that occur, and she is very thankful for an essential oil blend that she has us rub on the area twice a day to help hold off spasms as long as possible.
The surgery was going to repair the rod, replace a couple loose screws, and add some new/extra screws for better support. This would have been done from her back . . . an area that has had surgery 3 times before. Hope was super cute when she matter-of-factly told the surgeon in her last appointment in August, "Now this will be the fourth time that someone has cut into my back there. So be warned, there is going to be a lot of scar tissue there when you do!" He chuckled as he then asked her to clarify for him what all the other surgeries were . . . she is the girl with the "very long patient history!" In addition to this, the surgeon will also be attempting to fuse the two large vertebrae that didn't fuse after the initial fusion surgery. This will have to be done through an incision in the front lower left abdomen, from where they will push everything over to the side to access the front of the spine. Then, they will insert a cage and squeeze in some material to try to create fusion between the bones. It doesn't always work, but we're hoping and praying that it will work so that she will not have another broken rod down the road. So, she will have incisions front and back, with the surgery lasting 5-7 hours, followed by a 4 day hospital stay, if all goes well. The biggest risk of the surgery will be the need to lift and move the branching area of the ascending vena cava (the blood vessel that carries all the blood from the lower limbs back to the heart) in order to access the place where the vertebrae need to be fused. Damage to this area can result in life-threatening bleeding and the need for a vascular surgeon to repair.
Upon hearing that she would have two incisions, front and back . . . one a "well used" area with previous surgeries, while the other a brand new area with no scars . . . Hope had a funny response to the surgeon. She cheerfully quipped, "Well, I don't have a scar on that side of my stomach yet, so, I can add another one to my list!" The surgeon chuckled again!
Hope had a 3 hour appointment at the pre-op assessment clinic a couple weeks ago, including having all the pre-op bloodwork drawn. This was the hardest on her. She has been pretty traumatized from all the pokes she has had over the years. She has improved significantly in her coping skills with needles, but it is still really hard on her, especially because most times they struggle to hit her veins, resulting in lots of digging for the vein. After two pokes and digging each time, they finally got a vein, but they needed so many vials of blood that it took a while and the flow of blood was starting to slow down. The technician started moving the needle in her hand to try to get more blood, and that's when Hope reached her limit. She started saying she didn't feel good and was going to throw up. Instead of passing out, she had a strange catatonic episode, frozen in place and unresponsive yet still conscious. After she came back, she was quite nauseous and did throw up a couple times. Hope's biggest concern has been the fact that her surgery is happening in adult world now, and things are different. The anesthesiologist doesn't use gas before placing the IV, as they did in pediatrics. However, he was very kind to agree to come out of the OR and put in a smaller IV in the waiting area where her parents could be with her for the procedure, and then they would put her to sleep before putting in the bigger needles. She was also concerned whether she would be allowed to have her parents with her, including overnight. This will be up to the individual units and staff, plus depend on Covid restrictions.
So, fast forward to this past week. . .
We were supposed to call the hospital on Friday to get her surgery time. However, on Tuesday, we received a call from her surgeon's clinic that the surgery may be cancelled due to decisions made by government and hospital administrators. On Wednesday, the government made their public announcements that many surgeries were going to be cancelled for pandemic reasons. However, the surgeon's office called us and said to continue to follow all the pre-op orders and call the hospital on Friday, as her surgery hadn't been cancelled yet. On Friday afternoon, I called and she was still on the computer surgery list, but the list from the OR had not come up yet, and so I was to call back. I called back at 2:30 pm, and the girl said that Hope's surgery had been cancelled within the hour. On Saturday afternoon, I received a phone call from the surgeon. He had checked the surgery list on Friday at noon, saw Hope's name still there, and was prepared to do surgery on Monday. He didn't find out it was cancelled until Saturday, and was calling to make sure we were aware, too . . . very kind of him!
So, back to "our plans changed . . . but God's did not!" Honestly, this was not an easy week for Hope or for us. I asked Hope how she was feeling about it yesterday, and she replied, "Disappointed." The roller coaster of events and emotions was exhausting, and we went through the whole range of emotions I listed at the beginning of this post. On one hand I feel relieved that the surgery is postponed, because it is not fun seeing her walk through these difficult things, the recovery would have been long and hard, and Hope always seems to have complications and issues. I would love for her to never need this surgery! However, on the other hand, Hope is suffering in pain every day . . . both her neck and her back. I will update you on her neck in another post. It is hard watching her suffer in pain every day, and it has impacted her ability to stand and walk, as well as how long she can tolerate sitting up or going places. As a result, her walking ability has really gone downhill. We were thankful to have the opportunity to fix the problem through surgery. But now, the thought of going through all the pre-op steps again, especially bloodwork, as well as the mental and physical preparation for it, scheduling around it . . . it all seems like more than any of us want to think about right now.
However, as Hope heard the news last Wednesday that her surgery may be cancelled, I heard her share with someone that she trusts God regardless of the outcome as she quoted to them a line from a poem she wrote a few years ago. . .
Knowing that my God is always in control
Even though the storms around me swirl out of my control
Another truth we clung to this last week was remembering something that Hope said to us just a few weeks before her brain injury as we were going through a difficult situation. After praying together, she said, "Maybe Jesus will come back tomorrow and then what will it matter!" How right she was then, and how right she still is today! Maybe she'll never need to go through this surgery . . . maybe she will and she will be supplied with all the grace and strength needed by her loving Heavenly Father who is always faithful and to be trusted. Life is hard, but God is always good! As you pray for us to continue to speak truth to our hearts as we trust God over it all, please also pray for the many people whose surgeries are being cancelled. Hope missed her surgery by 5 days . . . we prayed for the people who missed their surgery by 1 day . . . how hard that must have been for them. Hope knows Jesus and has her hope firmly placed in Him and that changes everything for her in weathering suffering and disappointment . . . we prayed for those losing their surgery dates that do not have an assured hope in a loving Saviour who is with them and for them through all things!
We have no idea when Hope's surgery will be rescheduled to. Because there are so many surgeries being cancelled, there will be a lot to be rescheduled and it will take time to get back on track. I'm expecting months. The Lord knows, and that's good enough for us! So, we wait . . .
Lamentation 3:21-26
But this I call to mind, and therefore I have hope:
The steadfast love of the Lord never ceases;
His mercies never come to an end;
They are new every morning;
Great is your faithfulness.
The Lord is my portion, says my soul, therefore I will hope in Him.
The Lord is good to those who wait for him,
to the soul who seeks Him.
It is good that one should wait quietly for the salvation of the Lord.
Thank you for praying for our Hope! We are so blessed and encouraged by each and every one of you!
You are loved!!!
