Sunday, September 15, 2013

Prayers, Courage, Perseverance and the other PCP

Our last post was titled "A Fork in the Road" and chronicled the latest detour on our road trip to cancer-free.  Since then, we've managed to get terribly lost - completely off the beaten path with sketchy GPS reception. But now we are finally finding our way back to the asphalt.  Most of you are aware that Dan came down with a terrible pneumonia at the end of August that landed him 13 days in the ICU, 9 days intubated on ventilator support, and 2 days in a medically-induced coma.

Dan went to his first day at GW since March 2012 on Monday, August 26 feeling nervous, excited and motivated, but a little short of breath and feverish.  After contemplating sucking it up versus listening to his body, we headed to the emergency department at Georgetown for what became the scariest and most difficult experience of our lives.  Through tests and x-rays, procedures and evaluations, it was determined that Dan had PCP, a type of pneumonia developed only in people with compromised immune systems, namely the HIV and transplant populations.  Apparently we all have a little PCP in our lungs, but our immune systems take care of it and keep it at bay.  Since the transplant Dan's been on a medication to prevent him from getting it, but, as we are learning all too well, nothing is ever guaranteed.

On Wednesday, surrounded by my parents, Dan's mom and my sister, I listened to the doctor tell me how significantly Dan's health was "deteriorating" and that "the next 24 hours will be crucial".  He advised us to call our families so we could be together through that time.  By 2 am, Dan had his mom, brother, siblings-in-law, and parents-in-law at his side.  They gave him some paralyzing medications to put him in a comatose state so that every molecule of oxygen could be used to oxygenate his organs and keep his body going.  He stabilized overnight once the medicine kicked in. I can't describe how it felt to see my husband that way, other than I almost felt paralyzed myself.  We cried, we prayed, we held Dan's hand, we talked to him, we tried to make him comfortable, and we waited.  After 48 hours they took away the paralytic and Dan slowly started to wake up.

It took about 3 days for Dan to become aware, orientated and able to communicate with us.  Those 3 days were trying as Dan asked the same questions over and over, confused the days and time, experieneced a wide range of emotions, including panic, fear and sadness, and basically moved through various states of consciousness as the sedatives slowly wore off. He finally started pointing to letters on an alphabet board and using a picture system to communicate.  Dan's nurses and medical team started to see Dan's charming personality as he began to smile, give thumbs up and sign "thank you" throughout the day.  He got used to the tubes down his throat and starting coping with his health situation.  Before Dan went to "sleep" he thought he was going to be temporarily intubated on ventilator support while they did a lung biopsy to diagnose the pneumonia.  We had no idea that what happened even could happen let alone would happen.  It was quite a lot to handle.

Around Tuesday, after a week in the ICU, Dan was stable enough to begin receiving rehab services from physical, occupational and respiratory therapies.  He did exercises in bed and learned stretches to improve his mobility.  He worked hard each day and impressed the therapists with his stamina and drive.  The doctors continued to work on keeping fluid out of his lungs, managing his organ function and vitals and the rehab team pushed Dan to keep moving to avoid further muscle deterioration.  I went back to work and "the moms" stayed with Dan each day for moral support and strength (and of course good company).  We had an amazing team of medical people, our familiar team and many new faces, and family/friends to keep our adrenaline flowing while the days progressed.  By Friday, the tubes came out of his mouth and Dan learned to breathe on his own again with masks and a nasal cannula.  The speech therapist evaluated his swallow and recommended exercises to strengthen his neck muscles to safely move food/liquid to his stomach and away from his lungs.  She recommended thickened liquids and many exercises to improve his swallow mechanism.  On Tuesday, a nasal feeding tube allowed Dan to receive his nutrition through tube feedings so he could focus on strengthening his swallow and relieve the pressure to maintain his nutrition orally.  The days have continued to go on with rehab in full swing and the term "infection" being used less and less.

Now Dan can stand in place with a walker, move to his bedside chair/commode, step onto a scale and sit up independently.  He is making progress with his swallow and will hopefully have the tube removed this week and be able to eat enough on his own to keep up with his nutritional needs.  We plan to be discharged home with PT and speech coming to our apartment several times throughout the week. Dan's chemo has been postponed until he's healthy enough to tolerate the next doses, hopefully in a few more weeks.  Unfortunately, he had to take another medical leave of absence from GW to focus on his health.  He is more than disappointed but knows it's the only option right now.  His colleagues and professors have been sensitive, accomodating, and supportive throughout this entire ordeal.  For now, school is again on the back burner while Dan continues on this treacherous road to recovery. 

It's been three weeks.  The world is going on around us while our world has practically stopped.  I am back to work to regain some "normalcy"; although, nothing is normal at all.  I think back to the blur of tears, hugs, naps, occasional showers, occasional bites to eat and countless hours at Dan's side during the "critical" time.  My family took care of me and each other as we watched and waited for Dan to improve.  I prayed that Dan was peaceful, unaware of the looming danger.  I prayed that he would feel my love and the strength of our families through his sleeping veins. I prayed the medicines would work. I begged for the chance to feel Dan's hand squeeze mine back.  We have been blessed again and Dan is here.  He is making strides each day with abounding courage and perseverence.  We may not be "normal", but this is our life, this is what happened, and this is where we are.  I may not have found joy in every single day, but I can find it now.  Dan squeezed my hand.

We don't dwell on how hard our life is or how much we wish it were different.  We aren't always strong and we don't always smile.  We let ourselves cry and we get mad.  But then we get a tissue, we wipe our tears, we hug it out and smile.  We smile at each other and we acknowledge our blessings.  The blessing that we're here.  That the medicine is working.  And that we found our way back to the asphalt.

                                                    some PT with Patty

                            a little speech/swallowing therapy

                                   finally getting comfortable on 2Bles

                                 fresh air kisses