The best updates, I’ve often felt, are written after the battle. When the fires have died down, when perspective is clearer and the threat has backed down. When discouragement and frustration are spoken of in the past tense, and when the sunrise of victory can be seen in the morning sky.
And, alas, I have held out for such a moment to write this update. I’ve waited for a space of calm, for a quiet moment or two when I am soaking in the goodness of God and at total rest in what He is doing in our lives. But I have to be honest with you. The battle rages on. While there have definitely been moments where God has shined His faithfulness so clearly into the crevices of my grieving heart, I have yet to claim the space to rest and sigh the telltale sigh of relief that comes after the heat of battle is over.
Please don’t get me wrong—we have so many praises and answers to prayer to report!! Yes, God has shown Himself strong, capable, and faithful beyond our wildest imagination in the details of the past two weeks!! Shad went in to surgery on Friday morning, September 22nd, for a craniotomy and placement of electrode grids on the surface of his brain. Shad responded well to the surgery with no complications. The next few days were a blur of nausea, intense headaches, lots of pain meds, and fitful sleep. The following Monday, his seizure medications were withdrawn in order to provoke seizures that could be monitored by the electrodes on the surface of his brain. Shad’s brain did its job quickly, and by Wednesday morning he had suffered multiple grand mal seizures. Although the onset of seizures is not typically something to celebrate, we rejoiced that the doctors had so quickly gathered enough material to move forward with the next phase of his surgical evaluation, and his medications were returned on Wednesday evening.
On Thursday morning, the next phase of evaluation began. Several technicians along with Shad’s neurologist sat by his bedside and stimulated the electrodes on Shad’s brain while he read from a story book. The computer recorded Shad’s brain waves, which corresponded to each point of stimulation on one of the electrodes. I’m no brain surgeon, but I found brain mapping to be quite the fascinating process!! By the end of an hour and half, Shad’s doctor had confirmed the location and boundaries of the seizure focus in his brain, and just an hour later he sat down with the neurosurgeon to come up with a finalized plan for surgery.
By Thursday afternoon, we received confirmation that on Friday, September 29th, Shad would undergo Left Temporal lobe resection of seizure focus. This, in itself, was such an answer to our prayers!! When we started the week, we had no idea if this would even be a possibility for Shad, let alone that it could be performed so quickly—after just a week of observation (we had been told to expect two weeks!)! Oh how we prayed and rejoiced and cried together that night!! God gave a total peace to our hearts, and we rejoiced at His gracious answer to our prayers and the hope He had given for a seizure-free future for Shad!!
And thus, on Friday morning, after a pre-surgical sponge bath and a kiss on the cheek, I watched my beloved be wheeled off to his second brain surgery in eight days. And again, after almost six hours in surgery, we received a good report that Shad had made it through surgery well with no complications. We caught up with him in recovery and, as before, found him in much pain and nauseated from anesthesia.
The recovery from this surgery, however, was quite different. Surgeons did, indeed, remove 3-4 centimeters from his brain that contained his seizure focus. Although we had been told to expect some deficits in the months following surgery, neither of us were prepared for the reality. Shad struggled terribly on that first day to put his thoughts into words, and his emotions were raw. He didn’t want me to leave his side, and was very disoriented and confused. The boys came to visit on Saturday, which happened to be Brice’s eighth birthday. Shad was able to hug them and talk for a few minutes, but it was hard for Braden to understand why daddy kept asking the same questions over and over again. The three main deficits he has experienced are vision (upper right quadrant of sight is currently gone), short term memory, and word retrieval.
Thankfully, Shad moved from the Neuro ICU quickly after that second surgery, and was able to go to a normal room on the Neurology wing. All his checks with the neurology team came back extremely positive, and a visit from the Physical Therapist confirmed that Shad was left with no physical deficits after surgery. We praised God for the progress, but still wrestled with the unknowns of full recovery regarding his other deficits.
On Monday morning, we awoke to a surprise: the normal rotation of neurologists visiting the room ended their visit with a simple statement: “We’re going to try to get you out of here today!” Oh, what a relief! We gladly began packing up our things and later that afternoon, we were on our way home! Yet another miracle in this whole ordeal: In just ten days, Shad had been released from the hospital with two brain surgeries behind him!! We had been told to expect a 2-3 week hospital stay, and here we were, going home after less than a week and a half!
And just like that, we’re home! Shad still has a headache most of the time, although the pain has subsided some. The biggest struggle now is time. Waiting for healing. Waiting for results. We have been told to expect dramatic improvement over the next two weeks, which we have already begun to see!! Shad is speaking much clearer now, and is able to understand and remember so much! It is very difficult, of course, for him to see the progress for himself. Talking with people, carrying on the seemingly simple task of conversation, is still difficult and taxing for him at this point. This is extremely frustrating for him. It’s easy to be discouraged, knowing that we have a long road to recovery ahead of us.
After the two weeks, while the brain is working hard to re-establish connections lost in surgery, Shad will likely begin some therapy sessions which will help strengthen his brain even further in the areas of word retrieval and short term memory. As far as recovery goes, doctors are predicting that he is likely to recover fully and even improve from where he was before. Time will tell.
As far as seizures go, time will also be the biggest indicator as to whether the surgery was successful in securing seizure freedom. He will continue to take his anti-seizure medications for at least six months, at which time his doctor will determine if he is able to be weaned off. In a nutshell, there is no answer yet as to whether the surgery was successful or not.
And that’s where we stand today. Praising God for all He has done thus far, but still feeling the weight of what’s ahead for recovery. A husband and father struggling to adjust to a new, temporary, normal that leaves him feeling overwhelmed and inadequate and insecure. A wife and mother struggling with staying strong and staying positive when she feels utterly helpless to be what her husband needs (Wasn’t I created to be the weaker vessel…?) A family trying to adjust expectations and pull together in face of difficulty and a slow process of healing. A family in desperate need of God’s help, grace, strength, and comfort as we move forward.
We are reminded in these days of God’s call to so many in Scripture: Be strong. Be courageous. His grace is enough for us, and we ask your prayer that we would lean hard on Him in these days. Pray that we would not give in to the temptation to doubt God’s goodness or His plan. Pray that each of us would find our sufficiency in Christ alone, so that we may truly be strong in Him. Pray that we would be courageous in the days ahead, cheering each other on and being patient with each other in the healing process.
We are so grateful for each of you who have sent notes of encouragement, gifts, and who have prayed for us in these past weeks and months. Please keep those prayers coming! God has heard and answered, and I’m confident He’s not done answering on our behalf and for His glory! Thank you for standing with us, and for loving us through our pain and our valley. We praise God for each of you!!
Clinging to Him and Waiting in Hopeful Expectation,
Shad, Sarah, Braden, and Brice Deal
2 Corinthians 4:7 “But we have this treasure in earthen vessels, that the excellency of the power may be of God, and not of us.”