September 10, 2012 - One day at a time! - DONE

Day 1- September 10, 2012-There are many all too familiar surroundings as we walk into Primary Children's Hospital to be admitted as an inpatient for treatment round number two. There are of course new faces and also recognizable staff that are surprised to see us again. The lights, the smells, "the welcoming mattress' and soft towels?"  As we wait, Davis made himself at home with the red football pillowcase on the bed.


The admission process begins and his central line port is accessed, labs drawn, we track ins and outs and then we wait.  Many pre-medications are needed to help reduce the chance for a reaction to the treatment. Unfortunately, he did have a difficulty breathing reaction to the Atg.  It is by far the worst reaction to watch happen.  Davis is as usual calm even throughout the adverse reaction, but it's the look that is exchanged in our eyes that pierces your soul.  I helplessly hold his leg at the end of the bed for touching reassurance and try to just maintain calm eye contact with him, as the staff scurry around to try different meds to counteract the reaction. What is only 15 minutes or so seems like hours.  The breathing treatment and meds seem to be working and the treatment is held for a while and then started up again at a slower rate.  He seems to better tolerate the slowed infusion.  The kids and Jeff come for a quick visit and dinner in the cafeteria.  The visit doesn't last long as the exhaustion sets in.  He has his traditional shrimp, mozzarella sticks and chocolate bridge mix and we try to catch some sleep before the next round.  Atg finishes at 12:30 am, we sleep for an hour, premeds given at 2 am, then 2 units of blood take us with frequent vitals until 7am and another day begins.

Day 2-8am brings premeds again and then labs show the need for a platelet transfusion. The news then comes in that the hospital is out of the Atg serum and has ordered it from another place so it will be delayed in starting.  So we wait.
 It is always tedious to go back to the beginning especially with new doctors and feel like a number and a name rather than a person. Reliving brings up remembrances of past emotions and routines that I blocked out subconsciously hoping never to experience again.   One set of doctors come in, talk their talk and leave.  Davis, still a bit dazed states; "now, why did they come in?" not in a rude tone, just questioningly wonders the purpose when we discuss the same issues over and over.   His eagerness to move forward is the saving grace to revisiting the past.

Never look back unless you are planning to go that way.
                                                               - Henry David Thoreau

Davis continues to amazingly handle the present and optimistically plan forward!



The days drag, yet the time still passes.  We doze off here and there.  You know when your hungry and food commercials come on the TV enticing you...well, RC Willey mattress commercials have been running all night making us wish and long even more for our own beds!  Homework is brought out, worked on, becomes too much, put away.  The serum finally arrives and the preparations are made to start.  The fear of another reaction is unspoken yet tensely felt.

We watch the movie Tangled and staff comments on Davis' resemblance to Flynn Rider!  He is working on his smolder look and has talked of volunteering and being the character for a camp for sick kids. The treatment will take the rest of the day and into the night.  It's now 9:30pm and so far so good.  The treatment has gone fairly smoothly today and I feel myself wanting to let down my guard and relax, yet there is always the underlying uncertainty of it all.  No matter how many bags of blood or platelets or meds are given, it just never seems calm to watch it pour into your baby boy, no matter how big or small they are!  The newborn phase of care has set in again, I try to sleep when he sleeps, I watch his every movement and I find myself breathing in deeply when they ask him to take a breath. You would think with the constant motion of change, that each day would be different, but strangely enough, it sure feels a lot like ground hog day each morning!

Day 3- I awoke this morning thinking it was Thursday...nope only Wednesday!  Three days in and some semblance of a routine is now established.  Staff in the cafeteria are now daily acquaintances to have brief conversations. Parents, if not recognizable by the worry lines and dark circles are seen with a pink patient/parent bracelet and empathetic smiles are given to a moment in time that can only be understood when you are walking in similar shoes. A quick break, an elevator ride down to a remote spot in the hall to make a few phone calls to check in on the kids at home and perhaps have a non medical conversation!  A Utah truffle..or two, an elevator ride up, or stairs if enough energy and back in the room!  I took a quick break to meet up with visitors since the day had gone so smoothly.  As we have come to gain a great respect for cherishing the good moments, once again circumstances changed dramatically in an instant.  Upon returning to the room, we found that Davis' nose had started to bleed 10 minutes earlier.  Unfortunately this is often why it is so difficult to see visitors even when he has immunity to do so.  A quick hello through scurrying staff, pinching nose and spitting blood clots wasn't quite the optimal visit.


The bleeding continued for 2 hours and 2 mins as meds were given, packing, icing and pressure.  At one point the bleeding started to come from his tear ducts and ran down his face. I've never seen anything like it and after our initial shock wore off, well, we still didn't know quite how to absorb what had happened.  As a mom, my heart has never ached more for a child than at the moment I saw him cry blood and I reached deep within to find the strength to remain calm and wipe the tears away.

You gain strength, courage, and confidence by every experience
in which you really stop to look fear in the face.
You must do the thing which you think you cannot do.
- Eleanor Roosevelt

I'm not sure of the reasons or the necessity of this continued trial for this boy or our family at this time, but I do know of the absolute resolve of courage that is consistent in this boy, who is quietly through these experiences the most brave young man I know.  Gentle strength.

Platelets given, blood infusing and he is now quietly sleeping.  It's 1 am and I find myself exhaustively awake watching, waiting and praying.

Day4-I am happy to report that day four was by far better than three, not as good as two, yet still better than day one!  With that being said, treatment went well today.  We had to interrupt it twice today to give other meds that would help with the fluid overload that happens with constant infusions!  He has gained 18 pounds in four days with steroids and fluids.  It dated me when he wondered who the Michelin Man was when I made a comment on his appearance.

It was a trick to pull of the Flint Rider smolder with chunky cheeks, but he tried.  We walk to keep everything moving and avoid further complications.  Jeff came and they played games, watched sports and comedy!  I ran home for a few hours to clean in anticipation of being able to come home in the next few days. The warm welcome of an 8 year old jumping up into my arms, Ben held his famous hug so tight and so long, Ryan just grinned as he hugged me and Courtney's encouragement for the day, was just what I needed.  I had a few helpers and we were able to deep clean bathrooms and dust and vacuum the house.  A few loads of laundry, soccer, football, dinner, several phone calls, homework signed, dinner round two, bed time and oh yes, one gloriously long, powerful shower later, I made the trek back to the hospital.
I brought some food from home that was a welcome reprieve from the weeks cafeteria selection that lost it's luster midweek.
It is again 1 am. meds given, vitals taken and a we have a 3 hour break before the nest round.  Davis is snoring away, just constructed my "lounge-chair-bed", the clock on the wall is ticking loudly every third second, the fan by the window just kicked on and something sounding like a mouse is randomly clicking behind the red light switch to the left!  Should be another restful night...pass the earplugs please!

Day 5- begins with a long, yet, the most restful night thus far! The hope is that all will fall into beautiful alignment and Davis's wish to "get out" tonight will come true!  The anticipation to go home grows with each hour there is no issue that would otherwise stop the escape!  Meds and labs done at 4 am. I stirred at 6:30 to ask for results.  Hope for a discharge today is diminished as platelets once again drop to an extreme low and indicate a need for transfusion...which in return has not yet been reported, and thus a delay due to the timing of shift change. Platelets are thus not ordered and thus will take an hour or three to start, thus moving back the start time of day 5 treatment, thus putting us into the evening, maybe night, before completion, thus our minds jump to the conclusion...one more night IN?
So today's goal is to maintain a positive vibe despite the coming frustration that everyone isn't necessarily on the same pressed timeline to get out as we are.  Every pharmacist, nurse, and doctor would surely benefit from the empathetic experience of being on the patient side of life. We were originally told it would be a 4 day plan until we were admitted on Monday.  We quickly adjusted to and accepted the 5 day plan.We should have known better, but we pushed and wrapped our brains and emotions around the 5 day plan and not a 6th day option.

Stop. Breathe and well, carry on!

So, I get out of "bed" to walk around for a moment.  A quick look in the mirror as I pass out of the room.  It's amazing what even just 4 straight hours of sleep can do and my hair was in better shape than it had been all week thanks to my run home and shower, so I venture out!  I pass a staff member that has been here all week and we have our morning conversation of, how is he doing?, when do we leave? etc.  She turns to me in her sweet broken English, "you look tired today, you not sleep at all last night?" I felt like my 4 hour bubble had been popped!  A little voice inside says,  just keep walking, just keep walking!
Davis' desire to leave tonight is passed along to the day shift and platelets have been ordered STAT!
Definition of STAT
STAT: Medical term used to imply urgent or rush. It may appear in lower case letters as stat or in capital letters as STAT, as in "Treatment may include STAT surgery." The term is derived from the Latin word "statim" which means immediately!  directly, instantly, straightway

We laughed as we google ...a response for a definition/clarification-while we wait and wait....
Best Answer - Chosen by Voters-hurry up, or asap, lol

These are our own boredom induced definitions(no disrespect intended, we love the staff...it's just the system and process sometimes) 

Sometimes Time Awaits Time.     

STAT-ionary(as in not moving at a high rate of speed)

Surrender To Altered Timeframes

Sloths That Always Take a lot of time(Ok we were really tired!)

STAT- defined today was 3 hours and 30 minutes. 

Premeds on board.  Starting time for platelets 10:30am.  Atg treatment started at 11:30, so all in all, although late, it is the earliest we have started all week! Not the 8am start hoped for to get out of here by 6pm, but we've embraced it, however, Davis is still pushing for a discharge today no matter what time it is! He has waited all morning to be able to blow his nose, but couldn't until the platelets were on board.  This is to prevent the simple act of blowing his nose from causing another 2 hour bleed.  It is amazing the smallest of comforts.  He is wishing for a back massage and a bath to ease the stiff joints from being in bed most of the week! Platelets on board.  Small annoying clot removed from nose...ahh relief!  Blood pressure has been giving us attitude for a few days, so meds were given to bring it down, had a side reaction of raising his heart rate.  He said it felt good at first like when it raises in a workout, but then bothersome that it didn't come down for any relief.   7:45pm-Atg is now complete.  The decision was made for the need for one more round of platelets before we can be discharged. So we wait.   

"Sometimes life is just hard for no apparent reason at all."

As meds and platelets are given, I hesitantly start to pack up all of our belongings to take one trip to the car.  We have packed up before only to turn right around and unpack and be offered an extended stay. 

No reaction. So I take one load down as we await the final discharge instructions.  As I walk out into the long bright hallway to the elevators someone is beautifully singing on the floor below by the piano and my heart is lifted with peace and hope.  As I round the corner and can now distinguish the words as lyrics from Puff the Magic Dragon, I stumble upon a very long and after hours empty hallway.  About 50 yards away there are two small children one an obvious patient and the other presumably a sibling twirling and dancing to the music.  As an exhausted mother sits on the floor, I can't help but notice the pure joy in her smile as she watches her children dance and laugh.

I am constantly amazed and intrigued at the many stories that are dancing in the hallways!

First trip to the parking garage, I wander trying to recall just where I parked days earlier. Two thumbs up, it's 1039 pm and we are going home!

As we pull away, it was evident by the smile on his face in the moonlight that he was relieved to be free!  "I was thinking I would be ready to just go and do something.  My mind wants to, but, I think I might need a few days to recover!"

"Ya think?"

Hard times don't create heroes.

It is during the hard times when the 'hero' within us is revealed.

- Bob Riley

Davis you are my hero!