Archive for May 5, 2010

Remembering how to breathe…

On January 25th, 2010, Dishorne Welcome got sick.

Dishorne had just turned 16 the month before, and had been raised by his Grandmother since he was 8, when both his mother and father passed away in the same year. He was born with a heart condition that prevented him from having a normal childhood and the W.Y.M. summer school program was the first time he had ever been to school. He came faithfully and sat in the front row even though he was not able to read or write. A teddy bear of a guy, D was the last person to say a bad word about anyone. When we started studying the Civil Rights Movement, D was appalled and affected for days by the plight of Black people in the U.S. Sitting in his broken down wooden house with no running water  that he shares with his Grandmother, two brothers, and bed ridden Grandfather, D told me he never felt luckier. When we first realized he was sick, his eyesight started to fail him and he couldn’t keep any food down. His Grandmother brought him to the Roatan Public Hospital, where he was told he was in End Stage Kidney Failure.  Gram called me immediately since we have no dialysis on the Island, and in less than an hour we were on a plane to Tegus to the public hospital there called Hospital Escuela (It’s called this because it is a hospital that is also a college, and most of the nurses/attendees/doctors are all studying in school; this of course means that most of the staff that we talked to in the time we spent down there (almost a month) was under the age of 20.) What follows below is the journal that I kept while staying with D in the Hospital. It is riddled with sarcasm, as that seemed to have been the coping mechanism of choice for me, but provides the tiniest insight to what Hondurans must go through for the most basic of care; and also gives W.Y.M supporters an idea of how amazing these kids are.  You can never replace a Dishorne.

Day One: We arrive to Hospital Escuela after a frightfully stressful plane ride over to the mainland, in which we thought we lost Dishorne while waiting for the plane to take off in La Ceiba. It was raining and the pilot postponed the flight because he couldn’t see over the mountains. D fades quickly and Gram and I are worried we won’t get there in time. We feed him non salted crackers and talk to him to keep him awake and conscious. Midflight, something hits the cabin window next to D and it breaks, causing the air in the cabin to suck out the window making the most dreadful sound. Dishorne at this point has lost his sight completely, and is periodically passing out from weakness.

We arrive that evening to find that we are one in 80 million other people waiting in the pediatric emergency room (which is not actually open 24 hours a day, which leads to the 79.9 million people who did not get seen during operation hours to sleep outside on the sidewalk waiting until the next morning to go through the entire process of waiting all over again).  I can’t stop sobbing as I am engulfed in sorrow for every single of one of them and the pure unfairness that they were simply born where they were, and therefore lack in such a basic human need like proper health care. They wait with no words, and rock their babies and young children back and forth, back and forth, back and forth. They sit on the sidewalk outside waiting for their turn to then wait in the crowded waiting room, and the look in their eyes is not one that suggests they feel sorry for themselves, they never give up, never lose hope; just wait and rock back and forth, back and forth, back and forth.

Lucky for D, I’m a Gringa, which means that I am first in line for anything I show up to. Assuming I am going to donate money to the Hospital, they check D in, and the night ends in us being led to the entrance of the Pediatric ward where we spend the next two days waiting to see an actual doctor and sleeping on a concrete floor which houses numerous infections and diseases, and countless families of cockroaches which come out at night to feast on the access blood that has not been cleaned up and piss smell that paints everything in the entire hospital.  Over the next 48 hours I marvel at the lack of basic function of a hospital that boasts it is an actual place of learning for future doctors.  In the process of countless encounters with blood that I witness the doctors engaging in, not one wore gloves. I later came to find out they are an expense apparently not worth investing in (Coincidentally, either is running water, toilet paper, or soap).

Day Four: After three nights of no sleep, I try and drown out the cries of the sick babies screaming for their moms. Hospital Escuela has a very strict rule about visiting hours (which is actually Visiting Half Hour). And dying babies are no exception to the rule. In the first three days we are there, we talk to exactly one and a half doctors, and witness three deaths. After the fourth day, and two near death experiences, D is brought to the Pediatric Ward where doctors actually read the chart that we carried with us from the Roatan Hospital. After patting themselves on the back for realizing such a monumental concept, they realize that D is in end stage renal failure and immediately get him set up for the dialysis program; a request that was laid out quite urgently by the non-functioning doctors at the Roatan Hospital, and also the ENTIRE reason we traveled all the way to this specific hospital in this specific city.

Day Five: Conditions in the Hospital are disgusting, and the staff is even worse. Apart from a few functioning members of the medical team, I have an easier time discussing D’s case with my 2 ½ year old.

Day Six: We spend most of our time the first week waiting, and trying to get information from doctors that seem to be too busy for anyone but each other. I am patient at first, but then take the aggressive approach. One morning I wake up to find that D has been taken into the operating room, but no one will tell us why. Two operations and three hours later, I burst into the completely unsterile operating room (which by the way is being run by a surgeon wearing a t-shirt that says, “I need a condom and a volunteer”). Am met by a very pissed off security guard, but manage to find out that the doctors unsuccessfully put his dialysis catheter into his chest cavity before reading the chart which says NOT to put the catheter in his chest cavity because of his heart condition. Two painful tries and a code later, and D exits the operating room with a dialysis catheter in his leg.

The first day on dialysis proves to be too much for D’s body, and he gets so weak he tells me he sees angels. The doctors insist that he needs to go all the way to the bathroom across the hallway in the next ward to collect his urine in a bottle so I drag him over there when he feels slightly up to it. I have been helping him use the toilet since we arrived since he can no longer see and most of the time he is so weak he can’t even get his fingers to move long enough to pull his pants down.  I tell him as I’m pulling down his boxers for him and helping him sit on the toilet that he better not tell any of the other boys back in Roatan about our bathroom trips. D in his weakened state replies with a sly smile, “Don’t worry, its’ all going in my book”. Not 20 seconds later he collapses in my arms and falls to the floor and I am yelling for help.  His body is limp and I try to pull him up so he’s not lying in the various piles of feces and urine that are left on the floor by patients frustrated with the fact that the toilets don’t actually work and there is no toilet paper.  I can’t imagine a worst place on Earth to die in that moment and decide this is not where this will happen for him. I slap him hard in the face and tell him he needs to wake up. Not one medical staff member has come to my aid at this point, and one nurse actually watches from the doorway as I struggle to lift up his limp body. He wakes up after the second slap to the face and starts yelling, “She’s trying to kill me!” There’s the D I know.                                                                                                                                                  He begs me to just let him lay there and die, but I tell him that he is not going anywhere today that I can’t follow. This is the third time that he has crashed and I’m not sure if my heart is strong enough to pull him through again. After he is in bed, I smile at him, go outside, and fall on the ground sobbing.

Day 10: Most of the time I spend the night with D falling asleep on a chair with my head on his arm, but a couple of times I go with Grammy to Foundation Abrigo. It is a Non-Prof which offers a hostel like environment for families of patients at the Hospital. The staff is amazing, and the patients’ families that stay there bring an atmosphere of understanding that no other group of people could share. The time I spend there opens up my heart space to be able to return to the Hospital the next day refreshed and re-energized. They all get a big kick out of me, and laugh as The Gringa gets up to wash dishes with everyone else after the meal. Wherever I go, I am followed by a pile of giggling kids who enjoy watching me do the most mundane things, but apparently being an American makes it much funnier. I oblige them whenever possible, and enjoy their presence more than they will ever understand. Their stories haunt me; their smiles are the melodies of my heartsong.

Day 13:The Doctors tell me that D will need to be on dialysis for the rest of his life and needs to go to La Ceiba where they can take care of his long term care.  I leave the next day to go back to Roatan to raise money. The kids and I do a Maraton and raise L27,000 in one day. They all wear white tees with D’s picture on the back and stop every single person and car on the road and ask for anything they can give.I am so proud my heart is bursting.  I leave the next day to go back to D.

Day 17: I arrive late at night, Grammy is already gone to Foundation Abrigo. D is alone in his bed, and tears well up when he realizes it’s me. We talk early into the morning about dying. Up until now, he has only heard that he will get better. I have come to tell him the truth. To be his advocate and to help him make decisions for his future. He doesn’t have many. They have counted out transplant due to his heart condition, and his two options remain: Go to La Ceiba and stay on dialysis for as long as his body can take, or go home and be surrounded by love. One holds maybe a few months, the other holds a few days. D is quiet for a long time. So am I.  I crawl up next to him in his bed and stroke his face, assuring him no matter where he is he will be surrounded by love. All of a sudden, he wipes his tears and says to me, “Miss Courtney, I can’t die yet. I haven’t even kissed a girl, I cannot die a punk.” We make a plan to make sure that we brush his teeth and put fresh deodorant on every single morning at 5 am before the nurses from the school come around for their first rounds. D can’t control his kidney function, but he can control his personal hygiene. And like he says, “You never know which one of those nurses is looking for a boyfriend”. A sly smile crawls onto his face. And just like that D is back.

Day 18: The other kids in the Kidney Ward are amazing, their smiles light up the desolate room, and it becomes my mission to maintain that light whenever possible. While the other kids find me hilarious, D sees right through me and just thinks I’m lame. We get in trouble constantly for our wheelchair races, and freestyling competitions (D happens to be a very talented rapper). D takes up most of his time harassing the doctors and flirting with the nurses. I come back from the bathroom one day to find a whole team of nurses around him giggling. I ask him if he flirts with them every time I leave the room, and he tells me he likes to give them a little something every day if he can. But that’s D’s way. When we talk about his feelings on his life that night, he brings up needing to get his first kiss again. The very next day after returning from one of his tests he greets me with a smile and tells me to call him Big Daddy from now on. I laugh as he tells me he got “one little kiss” today. I ask him how he managed that in his state. He tells me that the little Spanish girl that helps the nurses take him to his tests when I am unavailable told him that her brother has improved and they would be leaving the next morning. She smiled at him after that, and he says it was the kind of smile that told him it was time to put the moves on. Two kisses later, D is a changed man.

The next day he shows me a pile of toy trucks a foundation donated to all the kids in the Kidney Ward. After I return from a meeting with one of his doctors, I notice two are missing. I ask him what happened and he says he doesn’t know. Romario, the boy in the bed next to D and also his greatest ally and biggest tattletale, informs me that D sold them to a little boy for L10 each. D responds by telling me you can’t take the hustle out of the hustler, just ask TuPac.

Day 19: Dr. Barbra and her husband, who are mission doctors from the States working in Tegus, come to visit D the next night to give him the last sacrament and talk about God. D has just come back from dialysis and is weak, shaking and sweating at the same time, vomiting frequently, and has a blood pressure of 72/34. They talk with D at first with the blanket over his face. But when asked what his favorite bible story is, he pulls the blanket down slowly and says, “the one where Jesus cures the blind man”.  They talk about God for a while, and when they leave, D is quiet. After a little bit, he asks me if we can pray. I say of course, and take his hands and start praying. He stops me and says, “no, I want to pray”. He prays for the next 15 minutes, and tears stream from my eyes. Easily one of the most beautiful things I have ever heard. When he finishes he asks me if I think he will make it to heaven. We talk about heaven, and he promises me to come back and visit me in my dreams and tell me what it’s like.

D and I stay up well into the nights laying in the bed and talking about his fears, hopes, dreams, and memories. I can’t remember the last time I have laughed and cried so hard in all of my life. We pray together, we hold hands, we cry, we know each others’ thoughts, and can read each others’ smiles. We have been through the fire and made it through. We will forever be connected on a level that is unreachable by anyone else. I stroke his arm as he falls asleep and after he drifts off, the bubble that is our world pops and I come crashing down into the sounds that fill the Hospital walls.

It’s the screaming babies that get me the most. They tear at my heartstrings, because I can’t see them, can’t comfort them. My eardrums know them by name, their cries for help, their fears, their need to be held. They long for their moms, for some form of comfort, but there is none. I long to climb over the wall and hold them close to my heart where they will feel pain no longer. But after a few hours, the numbness sets in. My heart is so overwhelmed with the sadness that it begins to shut down. And the cries I knew by name become nothing more than noise that I try to drown out.

Day 21-22: The night before our last 24 hours,  D and I stay up late into the night talking about his options, and after prayers, he tells me he wants to go home.  Hearing actual definitive words, I say absolutely, and am committed to making that happen.  I go immediately to Dr. Carolina (Head Doctor of the Renal Therapy Dept) at 7am the next morning after D’s request to inform her of what our decision is. She reacts with an expression that would have been more appropriate had I just told her I would like to hang D from a noose on the tree in the front of the Hospital facing the highway. Mortified, she asks why we are “giving up”. Leaving me to believe she has had no actual medical training whatsoever or ability to read her own charts. She tells me after asking me to wait an additional 3 hours sitting on the piss stained floor outside her office that I need to speak with a lawyer. I go to find Grammy, who at this point is too emotionally and physically exhausted to even get off of the chair to descend down the flight of stairs to advocate for D. She suggests maybe we don’t leave the hospital and he can just die here as an alternative to walking the distance to the lawyer’s office.  Fighting back the urge to light the entire hospital on fire, I tell her to please get up and follow me. In the lawyer’s office I nod along as Dr. Carolina explains to the lawyer that we would like to “give up”. The lawyer, who has more medical sense than anyone I have met with an actual medical degree thus far, states she believes we are making a wise but difficult decision (this of course being the first time someone has acknowledged how difficult it was to make a decision like this) and tells us we don’t need any discharge papers because it is our legal right to discharge him whenever we want. I then request for Dr. Carolina to write out a prescription for medications that D will need in the dying process. I might as well have asked her to paint me an exact replica of the Mona Lisa using nothing but her eyeliner pencil and some nail polish. Feeling overwhelmed, but not yet completely dejected, I tell D the good news which leads to a lengthy discussion on how excited he is to go home and see his friends, family, cat,  his brothers, and a Spanish girl that lives next to the church that he would like to share his third official kiss with. With a new sense of energy, I head over to the Nurses Station in the Kidney Ward to let them know we will be leaving first thing in the morning (this of course after using the last of my funds to purchase the non-refundable plane tickets). At this point I am not exactly sure why I even bother talking out loud as the nurses explain to me that I cannot remove D from the building without the discharge papers that only a couple of hours earlier the Hospital’s lawyer and the Head Doctor of Renal Therapy told me I did not need. I tell them I will go talk to Dr. Carolina and get them, a request which is met with a chuckle and a gesture towards the clock on the wall stating it is now 3:30pm. Meaning absolute nothing to me, I question what that means. She laughs again and tells me that it’s 3:30pm and the Dr. is already gone. Of course she is, why wouldn’t she be, it is after all 3:30pm in the afternoon. I run downstairs to catch the lawyer, who requests the presence of Grammy since she is his only relative here. I have no idea where Grammy is and have a greater chance at gaining social equality as a Honduran woman than getting her to walk all the way down to the office. I explain this much to the lawyer, who agrees to come up to the Kidney Ward and explain to the nurses what the basic right of the patient is. Good luck.

Three hours and a trek on foot across the city of Tegus in search of a photocopier (because why would the hospital need one of those anyways), and we are back on track to leave.

Day 23: D and I talk and laugh about what he’s going to do when he gets home, and what life means to him. Laughter being the single worst sound in this hospital apparently as we get yelled at incessantly to “keep it down”. God forbid any of the other patients feel the tiniest bit of joy from hearing something other than the 18 million screaming babies in the next room.  As I’m chastising D for touching himself repeatedly during our conversation, D informs me that he is itching his catheter. Nice, catheter has not been removed yet. I tell the nurse on duty, who tells me there is nothing she can do because there are no doctors who can remove it at the hospital right now. I meet her matter of fact statement with complete disbelief. So you mean to tell me in this entire freaking hospital, there is not one doctor medically qualified enough to remove a catheter at 8:30 at night? Apparently, the answer to that was already obvious to the nurse, who shook her head at me as if I was the stupid one. I not so politely tell her she better call someone who is qualified. She spends the next four hours racking her brain as to who that might be. At 12:30am a girl that looks like she was one of D’s classmates wanders in and tells me she is the only doctor on staff and then spends the next 15 minutes trying to figure out how to read his chart. She then tells me that she cannot remove the catheter because Dr. Carolina did not write a note stating this. I pointed out the note that she did write, which stated that we were no longer going to continue dialysis and were going to take him home to Roatan where there is no such thing as dialysis for the rest of his life. Thinking that this should be sufficient information to imply that he won’t be using the dialysis catheter, I ask her again to remove it because we have tickets to a non-refundable flight at 6am. She tells me again that she can’t remove it without Dr. Carolina’s consent. I look at her with pure ice shooting through my eyeballs, “So call her”. She looks at me and simply states, “it’s 12:30am”. I put both of my hands on the desk not two inches from where she is sitting and through gritted teeth repeat, “fucking call her”. An hour later Doogie Hosier tells me that we will take him down at 4am to try and remove it. I remind them that we are leaving this hospital for our flight at 5am with or without the catheter attached to his leg.

The babies cry extra hard our last night, I take it as a sign from God that we are not meant to be at that Hospital any longer.  I stay awake watching the clock, careful not to miss 4a.m. I wake the nurses exactly at 4, and they tell me to wait a little longer. I wake them again at 4:15 and again at 4:30. At 4:55am I have D dressed and ready to go to the taxi. I tell the nurses we are leaving, and they panic as if this is a surprise. One calls Dr. Carolina who tells them not to let D leave with the catheter in his leg. I lose it, and then tell Grammy “Get your bag, we are leaving” and that is exactly what we do. Not ten feet from the door, one of the Emergency Room Doctors stands in front of us and tells us we can’t leave, that we are putting his life at risk. My heart jumps at the word risk, and a moment of panic in the calm hits. I look at D, he is fading, he holds my gaze and the world stops moving. That’s the thing about D and I, we can talk without words. It’s almost 5:15, our flight leaves at 6:25. What do I do? Which decision do I make? His eyes send the message to my heart.  I tell her she either takes the catheter out in the next 5 minutes, or we are leaving.  She grabs him and takes him into the next room where in 24 seconds she has ripped out the catheter with the ferocity of a lion on its prey. D looks down as blood pours out of his leg, running like a waterfall down his leg and into a pool on the ground. I grab the first thing I can find and shove it on the gushing blood as the doctor stands there dumbfounded as the blood pours out of his leg. For the next 15 minutes we go through 3 bags of gauze, and the blood won’t stop. The doctors are crowding around him now, and we put him on a gurney with his legs up in the air to try and stop the blood. All of my emotions are pouring out in this moment; why didn’t I just keep walking, how could I have let this happen? I pray with him as he closes his eyes and tell him I’m sorry. I’m sure this is it. And I created it.

We miss the plane, but the bleeding finally stops. We arrive at the airport in time to switch our tickets and rest in the airport for a few hours before we leave for Roatan. D is tired, and weak, but anxious to get home; so am I.

Day 23: We are home! D is so happy, he is an entirely different person. He spends the day sitting on his porch while everyone he has ever met or known comes to visit him. He tells me he feels like Michael Jackson. I decide to move in with the family to help with D’s last few days/weeks/months.  We make a wish list and the first thing he wants to do is swim in a pool. The second is to take a day trip to Diamond Rock on the East Side where his Grandmother was born and raised. We pray before we go to bed, and D tells me this is the best day of his life. A surprising comment coming from someone who knows he has only a short while to live; completely unsurprising comment coming from D.

Day 24-28: Honoring D’s wish list, the kids call up a resort called Infinity Bay and tell D’s story and they give us a condo for free for the weekend. D and the kids spend most of their time in the pool, and D even swims! He goes underwater and jumps up out of the water like a fish. We take rides on the resorts’ speedboat, and stay up late eating pizza and talking. D can’t see the TV, but he sits next to the friends he’s grown up with all of his life and pretends he can see everything. The last day we are there D is starting to get a little weak. We go to church and the congregation puts their hands on him and Grammy and I start to cry. D leans over and puts his hands on us and says, “Don’t cry, please don’t cry”. We both feel shamed that he had to comfort us. I vow to never let him see me cry again.

Day 30: D asks me if we can swim in the Sea today, and I sneak him in the Sea against his Grammy’s wishes (oops). He says to me “Miss Courtney, I’m going to miss the Sea, but I think the Sea will miss me more”. That night, we sit on the couch and talk about his life and D’s breathing is getting short and it sounds like fluid is building in his lungs. Up until now he hasn’t had to take one pill for pain, but tonight I give him two. Before we fall asleep he leans over and whispers, “You are my best friend, is that weird?” I whisper back  ” I hope not because you are my best friend too.”

I lay awake listening to D’s breathing, counting breaths, holding mine until his next one comes.

At around 3 am, D sits up abruptly and throws up all over me. He hardly has the strength to sit up so I can change his clothes. His Grammy is in the room now helping me. We look at each other, but don’t say a word.

6 am, D suddenly reaches over for me and I grab his hand and tell him, “It’s okay sweetie, I’m right here”. He gurgles and then takes a breath. I am still. I can’t move.  My brain is frozen. My hands move quickly despite my brain freeze, and I check his pulse and his heartbeat. I draw him close to me and rock him, not wanting to call his Grammy in yet, wanting to spend just a minute with my best friend. I call his Grammy in then and she starts wailing. I excuse myself from the room and go outside. The sun is just coming out and I sit by the Sea and try to remember how to breathe.

The melody that plays in my heartsong...

Dishorne Delaney Welcome

Dec. 31st 1994-Feb. 26th 2010