"What time is it in Heaven?"     -Andrew

We are still here at Sparrow...still working through the obstacles standing in the way of getting Andrew home...and grateful for the help and support we have as we work toward that goal.

Andrew has had a cold this week, and has--in regular Andrew fashion--been very willing to share with me.  He is recovering nicely, but I'm feeling quite congested.  I decided last night that I would sleep until my body woke on its own this morning.  Just before 8:00 am I crawled out of bed and gathered my things to go to the Parent Lounge to get ready for the dressing change.  (Sedated dressing changes are scheduled for Monday and Friday mornings.)

Dressing changes are routinely scheduled for 9:00 am, and Andrew tends to spend every waking moment on these mornings asking, "When is Mom coming?"  "How long until my dressing change?"  Since he sometimes wakes as early as 5:00 am--and is not allowed to eat until after sedation, this makes for a challenging morning for Daddy who sleeps in the room with him during the week.  This morning Andrew did not wake until 8:00 am.  

The wound team (a nurse and two patient care technicians) arrived shortly before 9:00 am and donned gowns, gloves and masks to begin preparing for the dressing change by opening Duoderm, Tegaderm, PolyMem, and a couple packages of Medihoney (a calcium alginate dressing.)  Andrew's nurse had the Propofol drip set up, and the room prepared.  I put on a mask and gloves to help.  

It soon became apparent that the intensivist was attending to the urgent needs of a small patient just a few doors away.  The usual, "I want my wound team.  ...I want my Dr. Guertin.  ...I want my dressing change," was replaced with an impromptu prayer time for the sweet baby who has been our neighbor for a few days.

Dad fastened Andrew's Bi-PAP mask, and the dressing change began at 9:34 am with the administration of the propofol drip by the intensivist who was assisted by a resident.  The resident stood at the head of the bed watching Andrew's vital signs on a monitor...ready to intervene if there was a problem with Andrew's airway.  Andrew's nurse stood in the corner of the room near the foot of the bed recording vital signs and the amount of Propofol given, ready to assist with anything that might be needed.  The wound team began the work of removing the dressings, irrigating the wounds, and taking pictures to document progress.  I stood at the foot of the bed ready to pass supplies to the appropriate person, open packages, and dispose of trash.   

Recent dressing changes have been surprisingly difficult for me, and I have been relieved to take a step back and be more of a spectator than a participant.  Perhaps in the midst of the crisis--when the wounds seemed to be a mountain impossible to climb--I was more focused on trudging forward...no matter what anyone said.  (We have been told--by experts--several times that the wounds would never heal.)  Now that we see obvious progress...now that we know that some wounds have healed completely and that the rest are definitely healing, I find myself looking back and realizing how far we've come.  Though I'm not discouraged, I am tired.  We have been caring for the wounds for four long months.  In February I didn't know that wound care was a specialized field.  By the end of April, I had more hands on experience than I could ever have imagined.

Somehow when we work with the wounds, both my husband and I focus--emotionless--on the task at hand.  But when we really think about the way steroids ravage the bodies of these children who are already fighting for their lives, we find ourselves sickened.  And when we allow ourselves to focus on some of the crater-like openings that once threatened the life of our youngest son, our feelings are impossible to express.  How amazing that this--Decadron--is part of the standard treatment for these tumors and is not even really discussed with parents as a risk!  The farther Andrew is from diagnosis, the more I realize that some of the "normal" DIPG symptoms may really be a result of steroids rather than the tumor:  muscle weakness, fatigue, blurry vision--as a result of steroid-induced cataracts, the list goes on.

I left the room during the dressing change to make sure that someone from phlebotomy was coming to draw blood for labs.  (Andrew's port infuses, but does not draw.  We avoid the pain and anxiety of a poke by drawing blood only twice a week while Andrew is sedated.)  I returned, removed my gloves, washed my hands, and put on a new pair of gloves in order to continue to help without putting Andrew at greater risk for infection.  Phlebotomy arrived to draw blood while the wound team continued to work.  They finished by rolling Andrew to replace his bedding, slipping his arms through the sleeves of an oversized shirt and covering him with a warm blanket.

As he woke--upset--we showed him the usual treat brought by one of the members of the wound team (Reese's Peanutbutter Cups) in an attempt to calm him.  Recovery from sedation was more difficult this morning than usual.  I tried reminding Andrew of how I woke up from surgery and told myself to take slow deep breaths.  He replied tearfully, "I'm not a big mommy; I'm a little kid."  Dad worked to distract Andrew to no avail for quite some time.  Finally, the thought of lunch at Clara's (a restaurant close to the hospital) seemed to make him happy enough that the tears subsided.  

While Dad & Charis stayed in the room with Andrew, I went to begin working on updating the website.  But before I'd had time to write more than a few words, it was time for rounds.  I joined Dr. Guertin (the intensivist), a resident, and Andrew's nurse at the table for a few minutes to take a look at how Andrew is doing.  (The focus now is transitioning Andrew to going home.)  As rounds finished, Andrew's nurse scurried away to admit a new patient while we got ready to go to lunch.  We had the necessary papers signed, made sure we were caught up on medications, said hello to Dr. Scott (oncology), and walked a few blocks to Clara's where we ate lunch in what used to be a train station. 

We squeezed the wheelchair through the narrow aisle to sit away from other customers at the very end of the train car.  While we were looking at the menu a couple small children came running down the aisle to look out the window.  They stared at Andrew...curious, then returned to their tables.  Andrew ordered shrimp and french fries and enjoyed every bite.  Charis was happy with the salad bar.  Nothing sounded good to me, so I passed my meal along to Stephen who arrived just in time to eat with us.  Dad picked at his meal, as well, and we gathered Andrew's leftovers to take for later.  

We walked back to Sparrow honking the horn on the wheelchair while Andrew rang his bell.  (Special thanks to Nurse Beth for this and the patriotic pinwheel, among other things!)  We stopped at the gift shop on the way to the Pediatric Intensive Care Unit.  One of Andrew's favorite nurses, Kellye, had been having an intense morning when we left; and we wanted to make her smile.  Andrew proudly presented her with chocolate-covered cherries and they laughed together at their imitations of a frazzled Kellye.  (Andrew has become very good at imitations, and we--and others--have laughed until we've cried at the faces he makes.  His imitation of Pastor Adkins--talking Andrew through a dressing change before we began to use sedation--is definitely worth mentioning.)

We arrived back just in time for afternoon medications, and Dad and Andrew are dozing and watching episodes of the original (black & white) Superman while Stephen & Charis keep themselves busy, and I write.

Just a couple days ago we were discussing nurses, and one of the nurses said to Andrew, "You love everyone, don't you?"  Andrew quickly replied, "I mostly love Courtney."  Almost every morning Andrew asks, "How long until night...How long until shift change...How long until Courtney?"  One night a couple weeks ago when we realized that Courtney was not working, I said to Andrew, "Do you know who is going to be your nurse tonight?  Courtney's FRIEND Jen!"  He was satisfied.  I will refrain from saying too much more about nurses...because there are so many--even those who do not regularly take care of Andrew--who have been such a blessing to us!  ...And Andrew does enjoy many other nurses very much; weekends would not be the same without Racheal who has been caring for Andrew since October 2007....  I could go on....     

The biggest obstacle in getting Andrew home at the moment is therapy.  Once we leave the hospital, unless an exception is made, there is no therapy available to Andrew...even though he is getting stronger and this is obviously his greatest need.  Sparrow Home Care has the only pediatric therapists in the area, and they are not accepting new cases until the fall.  It is our understanding that there are no slots available in outpatient therapy.  Even if there were, we believe that it would not be best to transport Andrew to Sparrow two days a week for dressing changes and three days a week for therapy.

A second obstacle is that we have no way to transport Andrew.  This will not force us to remain in the hospital, but it does put us in the position of having to rely on expensive Ambucab services...or even an ambulance for an urgent medical need.  We do not need a van big enough to carry a wheelchair; we need a wheelchair-accessible van.  Lifting Andrew to place him in our van is risky to us as his caregivers...and risky to him because of his healing wounds.

Though these issues loom large before us, our perspective changes when we consider families who now have a child literally in God's arms since our last update.  Morgan was diagnosed within days of Andrew in October 2007, and Andrew & I met Kira at the National Institutes of Health in June 2008.  Another young boy (Andrea) from Italy died as a result of DIPG on the same day as Morgan, and little Kira died on the first anniversary of the death of Sara Hines.       

www.caringbridge.org/visit/ladybug

www.caringbridge.org/visit/kiracundiff

www.carepages.com (sarahines)

Finally, a dear friend of mine who is the mother of a child with DIPG and a breast cancer survivor, was recently diagnosed with colon cancer.    

www.carepages.com (keepingupwithcaleb)  

I came away from Kim's most recent update focusing on peace--that peace that passes all understanding.  As I consider the heavy hearts in the DIPG community in recent days, I cling to one thought.  

Though we may not have control over our circumstances, we do have control over the way we respond to those circumstances.  

Though we may not be able to imagine anything worse than what we are facing, God knows--and He cares--about each of these little ones, their families, and their loved ones.  He grieves with us as we grieve, and He rejoices with us as we rejoice.