I love this time of year watching the vibrant changes as the picture outside my window springs back to life. This year we are occupied with golf and preparing for another graduation, just as we did last year. But before we get to May 28th when Sidney will walk across the stage for the culmination of her high school years, Ryan will be heading to surgery.
Let me explain – Over the past several years, Ryan slowly lost his ability to stool. For an unknown reason, his large intestine stopped working as we tried every possible remedy to no avail. As a result, he had a cecostomy placed to keep his GI track moving. The day after surgery, the surgeon came into our room and told us a neurogenic bowel and neurogenic bladder often go hand in hand. He jokingly said, “if you ever need a Mistrofanoff, give me a call”. Little did we know just a short year or two later, Ryan would start to have trouble urinating. In November, I took him to see a urologist who did a kidney ultrasound and discovered Ryan’s kidneys look great so there was no explanation as to why he was holding his urine for very long periods of time. Of course we knew all along it is simply another unexplained neurological failure. For the past several months, his ability to empty his bladder has began to slowly dwindle. I have been doing intermittent catheterizations on him for six months, but he is still putting up just as much of a fight now as he did when we started all of this. I cannot blame Ryan for not wanting someone messing with his privates, and we cannot explain it is in his best interest to cooperate. For me to cath him, I have to sit on top of him to hold his legs down while someone else lies across his chest and holds his arms down. If a home health nurse were to come in and do it while I am not home, it would then take three people to get this accomplished as a home health nurse is not going to sit on top of him to restrain him. And it is not realistic or even possible to get that kind of help. As a result of Ryan’s inability to understand and cooperate with all of this, and because his ability to empty his bladder continues to decline, we have made the difficult decision to do a pretty major surgery called a Mitrofanoff or appendicovesicostomy. This is a surgery where the physician will take his appendix and make it into a tube that connects his bladder to his belly button thus creating a stoma to cath him through so we do not have to go through his private parts. It is a long surgery, and Ryan will be hospitalized for five days afterwards. He will go home with a suprapubic catheter from the newly created stoma to allow for healing then we will follow-up in three weeks to take that out and start cathing him. The recovery is painful including bladder spasms for a few days. Ryan will not understand why we are putting him through this which is difficult for Travis and me, knowing the pain he will have to endure. While it is short-term and the long-term results will mean no fighting and restraining to empty his bladder, it is still difficult to put him through this. Travis and I are always looking long term at what we have to do to give Ryan the best quality of life. This is just the next step.
We are grateful for technology that allows for options such as this, but it never gets easier to put Ryan through another surgery. It is hard to accept one more failing body system. It is difficult to ignore the elephant in the room that tells us there is nothing left to fail that is not a major body system – heart, lungs, kidneys, liver. He has stopped walking independently, and will only take steps when we force him to do so. Even then, his balance is poor, and he requires assistance. And his poor brain just cannot get a break from seizures. They just absolutely ravage him. As his body slowly fails and weakens, his spirit remains strong. Ryan loves to be vocal and interact with others. What a blessing it is to have him present with us even as he slowly fades. He is a cherished treasure, and we are so very thankful for every day we get to love on him and provide for his needs. We do not take a single day for granted. But if I am honest….if I bare my soul and allow you into my heart, I will tell you I am tired. I am so very tired of the constant fight. I am weary from having to stay one step ahead trying to navigate and guess what his needs will be, of what next steps we have to take to keep his quality of life as intact as possible. I am scared for a future of declining health and unknowns. I know what is coming, but I cannot accept it today. But thankfully for this day and the tomorrows within reach, all I have to think about is a surgery I do not want to put my child through. A surgery I know is absolutely necessary. The rest is in God’s hands. The future is His to decide. And really, every day is His. I know that. I rest in that promise. But it is still so hard. Some days I am simply tired of the fight. I want a break that never comes. I want a respite from the cares and the oversight and the constant work to keep my sweet boy as healthy as possible. And with all that said, I would not trade the gift of caring for him for anything this world could offer. Even in the fog of stress, it is a privilege and joy to serve my sweet Ryan.
So in my fatigue and weary state of mind, I am asking for prayer. Sending this boy back to surgery generates stress and worry for the older kids. They do not say much, but I know the stress and sadness is in there, lurking just under the surface. They worry and fear for the unknown. They love their brother without abandon. And of course Travis and I are not looking forward to this either. We feel the stress. We share the grief of another loss. We look into each other’s eyes and see the sadness Ryan’s failing body brings. As every parent would, we want to save Ryan from this surgery, yet we know it is necessary and will benefit his quality of life. So please pray for all of us as this hospitalization is looming in the next two weeks. Trevor is in the middle of golf, Sidney is trying to tie up the loose ends of the semester while waiting to hear if she gets the scholarships she is hoping for and making graduation plans. Brad’s last day of finals is the day of surgery. Please pray for him to have clarity of mind and focus as he finished his first year of college. This should be an energized, exciting time for them without worry over their brother’s health swirling like the blowing wind throughout their days.
Your prayers are much appreciated. Here are the details of this next surgery for those of you who want to know – Admission to Children’s is Thursday, May 4th in the morning for IV antibiotics and blood work. Surgery will be Friday, May 5th at 12:30. Some have already asked how they can help. The older three kids will all be home as of May 5th so gift cards for them to grab some food would be appreciated. I am so very thankful they can all drive and have their own cars. It will be a bit chaotic, but as we have done many times before, we will all forge ahead and get through this next hospitalization.
Ryan has had many surgeries and admissions over the years, and every time, we have been surrounded by your prayers and support. I only wish I could adequately express how grateful we are for those of you who have loved on us and been so very gracious. I only wish you could all fully understand how very loved and appreciated you are.
And we know that for those who love God all things work together for good, for those who are called according to his purpose. ~ Romans 8:28