October 2012 - Deja Vu of the unwanted kind - DONE

There is never a more fervent prayer in my heart than when I am praying for my children.  I try on a daily basis to not live within the realm of fear or concern for my children and their futures in this uncertain world. My prayers have been with Davis especially this past weekend. As his immune system has diminished again over the past few months, there seems to be an intensified prayer in my heart at frequent random moments.

Friday night he starts with complaints of a stiff neck, we massage, and watch to see if it was a strain from his sit-ups the night before.   There have been so many random aches and issues and last minute trips to the clinic that I try not to overreact, go to bed and sleep.  We headed to bed around midnight.  At 3am, I am awakened by a startling phone call from the basement. His weakened voice, "mom, can you come down here!" I was already halfway there.  My stomach turns as he grimaces holding his head and rolls back and forth in pain.  I feel his head and grab the thermometer to confirm a raised temperature.  My first prayer begins at that very moment.  I have been dreading a fever especially on a weekend, which buys us an automatic trip to the ER and admission.
We watch and do comfort measures for a few long hours of the night.  The temperature remains high but just below the 101 criteria we have been given to go to the hospital, but the pain continued to worsen.  A call to the on call staff.  Davis tries to rest in the massage chair for a moment as we await the response call from the doctor to determine what we do next. I try to busy myself packing a bag and ordering the house. I find a troublesome eye brow hair and as I look into the magnified mirror in the bathroom, my tired and worn eyes look back, again magnified.  Can you say a prayer while plucking a brow? Well, I did, and as I stared back through the depth of my own eyes, I was struck with an absolute sense of undeniable fear and peace simultaneously.
As we entered the ER for the first time this time around, the familiar setting brought back the many uncomfortable and scary nights that we had spent here back in 2010.  Deja Vu-ish feelings.  I have been praying for 2 years to never go back to where he was before and now we were staring it straight in the face. They had been notified that we were coming and ushered us back into the room immediately.  The regular routine of IV, labs and many new faces begins.
We are admitted to the ICS unit. He has had many tests and cultures to rule out meningitis, strep, and staph versus a viral infection.   He is on heavy pain meds and broad spectrum antibiotics and still having high fevers and intense head and joint pain.  He has had a few hours here and there without a fever, but the meds wear off quickly.  He had a few hours on Sunday to see family and even be distracted with a game of UNO while the meds were at a high!  We were also able to put on a mask and go to sacrament meeting one floor down. We decided an opening talk, a musical number and a closing talk lasting 30 minutes should be the norm for all Sundays.  

As the intense joint pain migrated from joint to joint, he began to express intense pain in his jaw.  This sent a wave of fear as I remember this is the same jaw pain that lead the doctors to the Aspergillis fungus that could have taken his life two years ago.  The first reading of the CT scan of his head and neck did not see any fungus.  They are saying that it would be rare for fungus to happen...I'm trying not to remind them too loudly that those were their exact words two years ago before we were once again "the rare". My mind keeps uncontrollably reverting back to 2010 when we sat with ice packs and fevers for days not knowing the source.  Then the diagnosis of the fungus in his sinuses.  
My recollection of the 5 surgeries in 7 days, as each time going to surgery was such an unknown at just how far the fungus had spread into his eyes, body and brain, cripples my emotions and I feel numb at the prospect of reliving those moments. I pray that I will be sustained to continue to be his best advocate and guided with a sound mind although I feel like screaming.  I am calmed as a hand in hand night time prayer, ends with a tender squeeze from my boy!

The hallways are empty from the constant flow of the weekdays. I stop and stare in the windows of the board room where during the week the doctors sit and discuss my child's life.  I wish they were sitting in the chairs right now...4 am Sunday morning making some sort of a plan, any plan.  I slip away to one of my two secluded places to think, sit or make phone calls.  As I sit in the small lonely confined room, I wanted to make a tally mark on the wall for every time I had been there in the last three years!  
The fevers are the worst and very scary, but he is hanging in there and thank heavens it is football season on TV! We will see a few more specialists on Monday and hopefully our regular, non-weekend docs!  

Part of me hesitated to write an update by email to family and friends until there was something good to write about and the past 48 hours have not been in that category.  This boy has been through the ringer.  The joint pain migrated to all his joints Sunday and yesterday and he maintained a 102-103 fever through mid-day Monday.  He had ice packs everywhere, but his body temp would just melt them so fast.  He has been unable to eat due to the jaw pain and unable to bare weight and get out of the bed at all.  The many tests over the weekend and yesterday have been to "rule out" many of their concerns.  Although no one is fully committing to no meningitis, staph or strep, the cultures remain negative.   We were grateful to see the Monday doctors and speak with our regular attending. They continue to have him on three antibiotics to cover any possible bacterial infections.  The fungal infection markers thankfully came back negative so far. Breathe.  He does have high inflammation markers. 

With all those lab results and his symptoms, they are leaning towards a "rare" adverse reaction to the Atg treatment that he received 4 weeks ago.  It is called serum sickness and is very intense.  Much to his dismay, they have had to place him back on high dose steroids to treat.  This compliant boy rarely stays down too long when he seems to just keep getting hit over and over again.  





He is a bit out of it from all the many different medications that he is taking.  It is getting increasingly difficult to have these demands on a continuously emotionally saturated boy. We both sat in sadness as he was told that steroids were the next step.  As he lowered his head, tears welled and he said, "I just don't want to do that again.  I'd rather deal with this pain and not walk than go on steroids again."  My heart breaks knowing I will have to deny his request and ensure that he takes the steroids.  Which he compliantly does.

On the brighter side of things, he has begun to respond to something(hopefully the steroids and then it won't be as discouraging for him to be on them again) and was able to stand and walk on his own today.  Slow, but willing himself to walk around.  He entertains and interacts with the staff as we walk the unit in a star pattern from window to window and door to door and then back again. All measured maybe about a 100 yard walk!   He has been hoping to have his appetite and less jaw pain in anticipation of Tuesday-blueberry pancake with butter cream syrup day!  I am happy to report that he ate 3 pancakes, fruit, hash browns, sausage, and juice.  Happy boy!

It is now Tuesday and he is receiving platelets and blood transfusions and with the steroids a total of 15 different medications.  He is a bit out of it and sleeps mid sentence and with drink in hand...til it tips!  My video isn't working on my phone or I would have some fun blackmail footage! 

The main thing is that his fever and shakes have calmed down and we pray that they will stay down.

Email update from Wednesday-GOOD NEWS FIRST; We are happy to report that we had 3 hours uninterrupted sleep finally and woke with labs at 5 am and took a long walk up and down the halls. He was able to eat pretty much what he wanted yesterday and this morning. His fever is now past 24 hours and he is no longer on oxygen.  We are decreasing a few of the major meds and will hopefully see an improvement in his ability to focus and get rid of some of the nasty side effects they have caused.  His level for his immunosuppressent drug is finally therapeutic (for the moment) and that dosage did not have to be altered. Yay! We met a darling 16 girl and her mom from Idaho that has Aplastic Anemia and was one of the rare that has experienced similar set backs like Davis, including the Serum sickness.  Her mom and I had several talks in the halls and were instantly connected.   It tugs at your heart to know that someone has experienced some of the similar issues that you have and some different.

NOT-SO-GOOD;They have been watching him all day for a few other issues that have come up over the past 24 hours. Some issues that will go unmentioned! Labs indicated the need for a consult from Nephrology and we are currently awaiting an ultrasound on his kidneys!

Ending GOOD news:  some of his previously injured "fantasy football" players are back playing now...priorities !

PS.The ultrasound just cleared his kidneys of the concerns that they were having and they looked good, we will just monitor with frequent labs to watch the function.

Thursday update-After a very rough and colorful dare I even say full-of--it-week, we were able to come home.  The word go-lightly for those of you who know just what that means will cause you empathy for this boy.  After being slammed with all the drugs and blood products, inactivity for 3 days and hospital food, the what was going Ins, by far began to pile up on the what was coming Outs!  His kidneys and many other organs were profoundly affected by this round of meds and slowed and stopped everything from top to bottom...still with me?  Usually our days and our nights are switched, however, we never really had a night this time around so we are just upside down. After a long 10 1/2 hour infusion with go-lightly (which by the way is a awful joke of a name)during the night, he was able to meet criteria enough to be released.  I can never say it enough that the gentle strength and compliance that exudes from the boy astounds all around him. He was more quiet than usual with the intense pain and feeling sick, however, would still find just the right moments to say his jabs and jokes(mostly at himself), profound words or just say his peace!  

I didn't dare begin to pack the bags when they began to speak of discharge this morning, but inside it was like Christmas approaching and as I took the first load out to the car, I had spring in my heart as I took in the fall air.  It's always the same emotion of feeling a bit free after times of such confinement.  I made my last mental tally mark on the little parent room wall and said a prayer of lasting goodbye!  My exhausted mind whirls with the surroundings as I pass patients and staff that are now familiar faces and friends.  My heart aches for those staying and just coming in.  

The happenings of lunch time is always a fun people watching time.  There is every array of emotions and walks of life.  From laughter to tears and healthy to ill. Life seems to swirl around when I stop to look around and feel lifted from the chaos for a second to be grateful for the good moments to be had in the middle of it all.  The helplessness of this week has exhausted and I consciously try to leave it behind and I watch him sleep in the car on the way home.  Cars and trucks hurry by.  Life is precious.

We will have to follow-up with labs and most likely another visit early tomorrow, however, as long as he can remain symptom free, we are home in our own beds for the moment and that is so healing in and of itself. I am a bit torn that I don't have the monitors and the extra eyes watching in the night.  I pray I will not be too exhausted to wake if needed.   All our love to you for the many prayers that made this day possible! G

Choose Inner Peace.

Nothing is worth losing your inner peace.

Take action as circumstances require,

but never surrender your inner peace.

Stop. Breathe deeply.

Close your eyes and breathe deeply again.

Then, and only then, take action -

from a peaceful heart.

- Jonathan Lockwood Huie