Prayers for Evan

I have contemplated posting anything about what is going on with Evan on social media or not but to be honest we could use all the prayers and help we could get right now.

On Monday, September, 27th I took Evan to the hospital to have an outpatient endoscopy (upper GI scope) and colonoscopy done as he has chronic stomach pain. This was his first colonoscopy but he had an endoscopy at the beginning of 2021 and has had general anesthesia handful of times before. Before any procedure they review what risks there are or what could go wrong.

Well the unthinkable happened and ever since Evan woke up from the procedure he has had loss of feeling in his right leg from his knee down as well as foot drop. Foot drop means he is not able to move his foot at all. He can move it inwards or outwards. He can't flex it toward him at all. He also can't flex his toes at all. He can very minimally point his foot downwards and he can curl his toes about half way.

On September 29th, I took him to the emergency room at 8pm. He spent the next 23 hours in the emergency room getting blood drawn, urine sample, ultrasound of his leg, xrays of his back, catscan of his head, EKG, mri of his head, mri of his upper spine, and a mri of his lower spine. Thankfully all tests came back normal but unfortunately that left us with no answers.

On October 1st, he had an appointment with his pediatrician so a referral could be made to pediatric neurology.

On October 6th, he started physical therapy. He has to attend physical therapy 1x a week but do daily exercises at home for a minimum of 3x a day for 15 minutes each session. 

On October 7th he had two appointments in Rochester. The first was with a neurosurgeon who said that Evan has damage to his peroneal nerve and that he is hopeful that with physical therapy in the next several months his peroneal nerve will heal itself. He said all though he is hopeful that it is not always the case. He said that in 12 to 18 months if he still has foot drop he could perform a tendon transfer where he would perform surgery and reroute his tendons in hopes to make his foot move. However, there are stipulations to this option amd when the time comes he may not be a good candidate for the procedure. The procedure itself comes with risks and it not guaranteed to be a success.

Later that day he saw the pediatric neurologist and after performing different cognitive exams and checking his reflexes said that he has "compressive neuropathy off his peroneal nerve at the head of his fibula." The doctor said his peroneal nerve must have been compressed by something for a period of time. So basically he has nerve damage to his leg being compressed but no one knows (or wants to admit) how this happened.

On October 14th, we ended up at the ER again because Evan's knee was swollen. I was told he has fluid on his knee and inflammation. The doctor's are not sure why. They are thinking it might be from overusing amd over extending his knee because in order to walk he must lift his leg up, kick his foot forward, and drop his foot on the ground. He also falls daily due to the foot drop.

On October 15th, he had to get two ultrasounds of his right leg (veins and arteries). The results showed some abnormalities so he had to be referred to the vascular department. 

Yesterday he saw vascular who gave him a different type of ultrasound to check the pulses and blow flow in his wrists, groin, ankle, and foot on both his left and right leg. Luckily, the ultrasounds look good and the vascular doctor thinks there was a tech error on the first ultrasound performed.

Today he had n appointment in Rochester to see the orthotic department to get fitted for an AFO brace to wear to help keep his foot up instead of dragging. Hopefully this will help decrease the number of falls he has. He was fitted for a brace and we are now waiting to see if the insurance company will approve it and how much of the cost they will cover. They said it will be 2 to 3 weeks before the brace is ready and that he will require another doctor's appointment to ensure that the brace fits correctly. Once we have the brace we will have to buy him a couple off new pairs of shoes so that the brace will fit inside the shoe comfortably.

He has to follow up with his pediatrician in two weeks. Then in November he has to have nerve conduction testing done in Rochester then follow up at the neurosurgeons office at the end of the month.

Evan has a long road ahead of him. Luckily so far he has been pretty resilient and is adapting to walking with his foot drop pretty well. Unfortunately there are a lot of activities he cannot participate in. At this point we do not know if Evan's nerve will heal itself over the next several months or if this will be a permanent injury.

Evan could use all of the prayers he could get right now. I have already used almost all of my paid time off (sick and personal) days at work. Within the next couple of weeks I will be out of paid time off and any missed days will be unpaid. The donations received will help go to his copays and any other medical bills, new sneakers, gas money from traveling back and forth to doctor's appointments, meals while traveling, our monthly bills, and other unforseen expenses.

Thank you for taking the time to read this as I know it is lengthy. Please keep Evan in your thoughts and prayers!