Monday, August 8, 2011
August 8, 2011 ~ Day 241
Yesterday night I reached out and asked everyone I knew to pray for my four year old son. Everyone.
I asked our friends and family, my friends from the Road Back Foundation, the prayer group from my church Mother's group, our play therapist, the followers of this blog. I asked everyone who reached out to me personally, and even some who didn't.
Then I prayed, the same prayer I have held in my heart every day for two weeks. I kept my focus tightly upon a vision of my son as healed and happy, running around doing everything he most loves to do... riding his bicycle, swimming, playing tag with his big brother, climbing all over his Daddy. I prayed that the light of divine grace and love would heal him and bring this vision into our reality.
Tonight I want to thank you all, every single one of you, for your prayers.
It has been a very long day, but I believe that your prayers - and ours - have been answered. At this moment, at least for now, the prognosis for our son looks a lot better.
* * * * * * *
Yesterday evening by about 1am, I almost cried when my son awakened screaming about how itchy he was. "Give me the strength to keep on going," I murmured toward the ceiling and then cared for him until he fell back asleep... knowing that we would need to leave our house by 8am to arrive on time for his 8:45am appointment with the orthopedic surgeon.
All too soon dawn had broken and I heard my eldest and youngest children romping and screaming in the room next door. Bleary eyed, I faced the clock - 6:30am. Time to get a move on.
Before we could leave I needed to make several arrangements, most importantly to set up the ophthalmology appointment for this morning that the ER doctor had insisted on in order to discharge my son from the ER on Saturday night.
"Call the hospital right at 8 on Monday," she'd said, "and let them know that we said your son MUST be seen by the ophthalmologist immediately, as early on Monday as possible."
Yet, when I actually spoke with the woman in scheduling this morning, it turned out to be a lot more complicated than simply saying "The ER doctor said...".
There was no time today, she said. None at all.
The doctors were all full up.
There was another clinic about an hour away that we could drive to, but we needed to be there by 10am.
(This last option was impossible, as we needed to come back to her hospital at 8:45am to see the surgeon and get his cast off and wound checked.)
Was his eye watery? Did it have discharge? she wanted to know.
"His eyes are red and swollen, he is complaining of a headache, and the ER doctor said it was crucial that he be seen today."
"But does he have any discharge from his eyes?"
"Not that I know of."
"Then come in tomorrow at 7:15am," she said - and that was the best she could do for us.
"Okay," and my voice quivered a bit. "The ER doctor said my son could lose his vision if not treated properly. Will tomorrow be soon enough?"
"We just don't have any availability today, ma'am."
There was no point in fighting with her, she'd already spoken with her supervisor once. Besides, we were late to leave for my son's orthopedic appointment. Time to trust. Time to go.
My husband, who had thoughtfully offered to stay home and watch our other two children so that I could go with our son alone to his appointment, kissed our son goodbye and wished us luck.
"Hopefully you'll get your cast off today, little man!"
Of course, the moment I went to buckle him into the car, I noticed a yucky discharge from his eyes for the first time.
* * * * * * *
Blessedly, we made it to the hospital in only 20 minutes - about 18 minutes faster than on the day of the accident. Despite our late start, we arrived to his appointment on time.
As we waited in a room to be seen, I placed a telephone call to my son's pediatrician, explaining the erythema multiforme, the eye problem, and our inability to see an eye doctor until tomorrow. I mentioned the watery discharge.
"We'll see what we can do for you and call you back," the operator replied.
"Thanks!" Squeezing my son, I assured him that we would get the best care for him possible today.
Then we began to fill out the paperwork.
When we got to the question, "Rate your pain on a scale of 0 to 10," I stopped to ask him how his hand was feeling. For at least 10 days he has consistently told me that his hand felt okay.
Today, he responded differently. "It hurts, Mommy," he said.
"It does?" My stomach clenched.
"Yes, the one finger here (he gestured to the side of his cast) hurts."
"Well," I sighed. "I guess we're in the right place, if you're having a problem."
Inside the worrying began to tick tock again, as I wondered exactly what we would see when they cut off his cast. Would there be an infection? Would it be the tissue necrosis his doctor had described at the last visit? Would I soon see what my baby boy's fingers looked like, partially "dead"?
Taking a deep breath, I changed the subject and began to talk with my son about how great it would be to see his hand again after two weeks covered in a cast.
As we were chatting, the cell phone began to ring. Glancing at it, I noticed in surprise that it was the ophthalmology clinic calling me back. "This could be good news!" I smiled at my boy.
Sure enough, it was!
"Ma'am," I heard a male voice on the other end of the line. "My name is Simpson* and I work for Dr. Brennan in the Ophthalmology department. I realize that you were told today that we could not see you, but actually since we were faxed doctor's orders to see your son today, we legally have to comply with that."
"Great!" I responded. "We're actually in your building right now, on the 4th floor! When would you like us to come to you?"
"Why don't you stop by in about 30 minutes to an hour," he replied, "and then we will see how to squeeze you in."
"Thank you so much!"
"Yay! Honey, things are starting to turn around today!" I beamed at my little son.
Just then, the door to the room opened and the physician's assistant came in. "We're going to have a tech come in to cut off the cast," she said, "and then we're going to look at it."
My son started to tremble, nervous about having his cast cut off.
"They won't cut my arm, will they Mommy?"
"No sweetheart, they know what they are doing."
Soon the tech came in with a very interesting looking machine.
"Do you like the sound of vacuums?" he asked my son. "This machine will be loud and sound like a vacuum but it will only tickle. Not hurt."
"Okay," my son answered nervously, and began to hide the casted arm behind his back.
Gently I pulled it back forward and held it in place so the tech could do his work. With great speed and dexterity he neatly cut the cast off at both sides and began to unravel the inner cotton.
I watched with baited breath - wondering again what we would see.
Would my boy need more surgery? Or would this part of his trauma finally draw to a close?
* * * * * * *
Happily, we saw no dead skin. His four fingers (the ones that had been shielded from the son) looked pale and smelled quite terrible, still caked in dried blood... but they seemed to have a normal flesh color under the crud.
I exhaled. Gently turning his wrist over, I noticed only one area that looked strange - a dark blue line near the crease of his finger.
"What is that, Mommy?"
"Oh honey, I don't know - but I think it is just a bruise."
The physician's assistant re-entered to examine his hand.
"Yes," she assured us, "that is just a bruise - part of the normal healing process. In fact, your son's hand looks excellent for this stage of healing. Sometimes we see that fingers have turned black when you have this kind of a fracture at the fingertip. But the color here is good. You won't need any more surgery."
My face burst into a broad, beaming grin - as though someone had lit a Sun within my skull.
"Hurray!" I exclaimed. "Did you hear that, honey? You made it! You've gotten through the hardest part! I'm so proud of you."
My son stared at us both suspiciously, as though wondering whether or not he could trust any good news.
"It still hurts a little, Mommy."
"That's normal," smiled the P.A. "It may take a while to feel completely well."
We then waited to meet the "real" doctor to get his take on the situation.
"This is a fantastic looking hand," he said. "Really the best possible result you could have right now."
Again, I lit up like a Roman candle and felt tears spring to my eyes.
"So we're past the infection risk?"
"Yes. No need for another cast. Simply wash it gently with soap and water and bandage it like this (wherein he gave us a lesson using bandaids) for the next four to five days.
The nails will fall off," he continued, "and when they do, there may be a drop of blood. Make sure to inform all over-responders... those who might become unnecessarily worried and call 911 if they see a small amount of bleeding, like babysitters or grandparents... that this is normal. Simply press on the nail bed and put on a band-aid, and Voila! he will be healed."
He then let us know that our son could return to swimming lessons in one week. THIS was the news that finally helped my son realize that we'd gotten a really great outlook today.
Suddenly his little face illuminated with as much radiance as mine had done.
"I can go swimming again Mommy? In a week? Really?"
I watched about ten years of anxiety fade off of his cherubic four year old face.
"Yes honey! Isn't that wonderful?"
Kissing the top of his head, I thanked the doctor and his P.A.
"Thank you so much, you have made our entire year," I smiled.
* * * * * * *
The rest of the morning involved a very long wait at the ophthalmology office wherein the extremely affable and very Irish Dr. Brennan carefully examined my son's massively dilated eyes and pronounced them healthy.
"He may have a little bit of pink eye but there is nothing you need to do about it. Right now the pressure in his eyes is perfect, as is his vision. I would like to see you back in three months, to makes sure that this erythema multiforme is not the first sign of a juvenile rheumatoid arthritis. I expect that he will continue to have perfect eyes at that time."
He then confided in us that his own daughter had experienced erythema multiforme and her pediatrician had chalked it up to a post-viral reaction. "She's been fine ever since," he added.
All in all, this was a very comforting conversation and the topper on a fantastic morning. Definitely worth the two hour wait in their lobby.
My son and I left the ophthalmology office nearly skipping, hand in hand, even though neither of us had eaten breakfast or lunch and it was 1pm.
As we exited the building he trained his dilated hazel eyes on me and said,
"Mommy, I'm going to be okay now."
"Yes honey, I truly believe you are."
We know that the erythema multiforme may recur.
We know that we've got work to do figuring out his allergies.
We know that we need to be watching out for blistering and sloughing skin.
We know that his bruised and stitched up little fingers will take months to fully heal and re-grow their nails.
We know there is the remote possibility that this rash has been the signpost for JRA. (Unlikely.)
Yet we also know something else today ~ something beautiful.
(1) Prayer truly heals, both the mind and the body. Life and faith can join together to create a happy outcome.
(2) Together, we are strong enough to get through just about anything. We are a powerful team.
(3) It is so important to hold on for the new day... even during our darkest moments.
In just 24 hours the world will always spin on its axis, changing everything.
Searing, painful sorrows may turn into radiant, honest joys.