Down but Not Out

On Saturday, October 12th we had our annual trip to Tweite's Pumpkin Patch (post to follow), that night Michael started crying in pain saying his eyes hurt.  It caused us concern because Michael hardly ever complains.  We looked at his eyes and they weren't red, watery, burning, or itching.  Michael just said they hurt.  Thinking he was tired or had a headache, we put him to bed.  The next day was Stake Conference, Michael woke up with a little bit of eye pain, but still felt up to going to church.  That afternoon after a long nap, he was crying again with pain.  But the next day, Monday, he was fine and went to school, so we didn't think about it again.

 

Monday, October 21st, I sat down to read with Michael and when it was his turn to read he had to lean in close to the book to see the words and he was still getting letters wrong.  Thinking that it was his turn to go to the eye doctor and get glasses, I called and made an appointment.  Wednesday, October 23rd, there was no school (why a Wednesday you ask?  Good questions!).  I was playing "Sorry" with Michael and he had to lean in really close to the game board to move his pieces.  He then said that he couldn't see my pieces (which were yellow) because they were too bright.  I asked to see his eyes - his pupils were huge, just like they would be after being dilated.  Sirens were going off in my head.  I had Nathan check his eyes and he immediately called his friend, Mike, from med school that is now an ophthalmologist.  Mike said that Michael needed to be seen, so Nathan called the ophthalmologist on call and she agreed.  The next day we went in to the Clinic.  We then proceeded to have an extremely long visit and a gut wrenching one at that.  Michael could hardly see anything with his left eye.  He could count fingers if they were 6 inches or closer, he could not see any letters or light projected on the wall or see color.  His right eye was 20/200, which is better but not much.  He could see a limited amount of color with his right.  I was trying not to panic.  My baby was basically blind in his left eye!  The ophthalmologist said that he could see quite a bit of swelling of the optic nerves, but would need an MRI to see more.  He also  wanted to schedule an MRI to see if we could find the cause of the eye pressure causing Michael's pupils to swell.

 

So my sweet Michael had an MRI scan of his brain on Friday, October 25th.  Because the scan was an hour long they had to put Michael "under".  The night before, Nathan and I had the worst night of our lives.  We hardly slept and were trying to remain as calm as we could for Michael's sake.  We discussed the worst case scenarios, which were: cancer, brain tumor, or some condition that would cause blindness.  Our friend, Jacob Ekins, is a Neuroradiology Fellow.  Nathan had asked him if he'd be around.  Jacob said that he would not be able to participate in Michael's MRI, but would be close by.  He came in and saw Michael before the MRI and after the MRI he was able to read the scan.  I will always hold Jacob in the highest esteem for the kindness he showed me and my sweet boy.  Jacob found me in the waiting room and reported that Michael's MRI was clean except for the swelling of the optic nerves.  "So it's not cancer?"  "It's not cancer."  Cue the huge tears of relief!  I appreciate that Jacob came and told me the news shortly after reading the scan, so I didn't have to wait anxiously to hear the results.  Jacob also got permission for Nathan to read the scan right away, which he appreciated.

 

It may be strange to say we were relieved because Michael still was not out of the woods, but we felt that if he didn't need chemo or brain surgery we could handle anything!  The preliminary diagnosis was optic neuritis which is a swelling of the optic nerves.  It can be caused by a virus or is a symptom of an autoimmune disease.  It will often present as Michael's did: eye pain and then oversized pupils with limited sight a week or so later.  Michael was admitted to the hospital Friday night to begin high doses of steroids.  The steroids were to help the swelling go down.  He also needed to have a spinal tap and have blood work done.  Michael was in the hospital until Sunday night.  They wanted to monitor him while taking the steroids.  The neurologist was hoping to see more results, so instead of taking the original 3 doses, he wanted Michael to have 5 doses.  Nathan worked his "magic" and made it possible for Michael to have his last two doses in the outpatient infusion center.

 

 Michael enjoyed playing the iPad in little bits.  He had to hold it so close to see and it made him tired to do that for extended time periods.

Last dose of steroids!  He finally got his IV port taken out and his arm was his again!

 

Throughout this whole experience Michael was his usual calm and happy self.  He never complained about not being able to see, so the symptoms could have showed up before I noticed them because he never said anything about it.  All the doctors and nurses in the hospital kept telling me what a sweet boy Michael was.  One of the reasons this experience was so hard to handle was because it happened to one of the sweetest little boys ever.  Nathan kept saying that he just wanted his happy Michael back.

This past Monday, the 28th, Michael had his eyes checked again.  They were a tiny bit better, but we couldn't help but leave a little discouraged.  On Halloween, Michael went in again, his right eye was 20/50!  He just kept reading the lines of letters, meanwhile, Nathan and I are teary eyed with huge relief, cheering, "Go, Michael, Go!"  His left eye was 20/150 which was better than the right eye was before the steroids!  We have been trying to be patient with the return of his sight, so this result is a success!  Nathan looked up some research done on kids with optic neuritis.  There are not a lot of studies out there because this condition is not very often seen in children.  According to the studies he read, it took some kids up to a year to regain their sight and it was not back to their original sight meaning most still had to wear glasses (but we know that Michael would probably wear glasses anyway).  The test results on his blood and spinal fluid have all come back negative for autoimmune diseases, but we will know more after the cultures come back.  We meet with the neurologist on Monday.

 

This was an extremely scary situation for our family and one of the scariest moments as parents for Nathan and I.  This burden would have been impossible to bear if it hadn't been for loving friends and family.  We had our families fasting and praying for us,  Michael's name was put on the prayer roll at many temples, friends were fasting and praying with us, friends brought us dinner, took our kids, visited Michael in the hospital and sent concerned texts.  I kept telling Nathan that I felt unworthy of all this attention, but it made this burden a little lighter.  The Primary made Michael huge banners that they all signed and friends brought balloons.  Jacob's kids brought an iPod for Michael to borrow and listen to a "Star Wars" radio show.  A huge thank you for our good friends: the Fletchers, the Jacobsons, and the Dangerfields.  The Fletchers took Haley and Alina overnight, the Jacobsons took Nate and Andy overnight, and the Dangerfields took Nate, Haley, and Andy to church and kept them for most of Sunday.  This all allowed me to be at the hospital when Michael had his spinal tap and to be there on Saturday and Sunday without worrying about my kids. The Fletchers also cared for Alina on the day of the MRI, which allowed me to be with Michael.   It means a lot to me to have friends who love my children and will take care of them.  Most of all I am grateful for my sweet husband who allowed me to see his emotions as we went through this.  I appreciate that he didn't try to be the "strong" one and that he grieved openly with me.  He stayed both nights in the hospital with Michael and was there for him when I couldn't be.  I am so grateful he is my eternal companion and I know with him, I can face any challenge head on.

 

We look forward to the day when our sweet boy can see completely again.  We are grateful to a loving Heavenly Father who allowed Michael to be a part of our family and who has shown His love for Michael through the many blessings we have received throughout this whole experience.  He is aware of each of us and loves us, of this I testify.