e·soph·a·ge·al pertaining to the esophagus.
e·soph·a·gus a muscular passage connecting the mouth or pharynx with the stomach in invertebrate and vertebrate animals; gullet.
di·la·tion the act of expanding or the state of being expanded.
tra·che·ot·o·my Surgical incision of the trachea through the neck, as to make an artificial opening for breathing.
G-tube A tube inserted through a small incision in the abdomen into the stomach and is used for long-term enteral nutrition.
The morning begins early, “’O dark-thirty” to borrow an idiom from our friends. The night before I’ve made sure Josh eats an adequate dinner, gets to bed early with a generous g-tube feed just before he falls asleep. This gives him a little extra in his belly, as he won’t be able to eat the next day until late afternoon. Sometimes an anesthesiologist will call that evening to discuss Josh’s sedation making sure I know he cannot eat and drink for six hours before the scheduled time of his procedure. Many times they don’t call, seems we are “pros” at this and therefore; don’t need a call.
Yes, I have a favorite anesthesiologist, one who really cares about Joshua, and we always request her, but rarely is she able to attend his dilation. This can make it tough if I come across a “new to us” doctor who has an ego. I know how Josh responds, I know what he needs, after all we’ve gone through this procedure over 100 times by now, but if I don’t approach a “new to us” doctor in just the right way, I can alienate him. I WANT the anesthesiologist on my side, so I tread lightly. Sometimes, if they are “new to us” doctors, they’ll take one look at Josh’s enormous file/records and ask me how we handle the sedation. This endears me to them as I know they have come to the realization of the knowledge, heart and soul and power of an involved, but not overbearing or hysterical mother. Some doctors really respect and rely on the mother, truly listening to them. Some doctors do not. Maybe they’ve had a dreadful experience with a mother. Maybe they just have a huge ego.
I wake first, letting Josh sleep, while I get myself dressed and ready for the day. Then I rouse Josh, unhook him from his mist machine, give him his Levoxyl medication, and pack him in the car fully dressed in his pjs and socks. I love the fact Josh has NEVER had to wear hospital pjs. This has helped him feel some control and comfort. We drive the half hour to the hospital, park and walk in and up to the third floor where we check in with Edna in Pediatric Admissions.
Edna is a kick! She’s kind, loving and always has a cheerful smile on her face. And if I ask her, she’ll begin preaching and sharing scripture verses with me just for encouragement. And oh, can she preach! She loves seeing Joshua. Once we’re checked in there, we head down the hall to Pediatric Short Stay. The nurses there are phenomenal, especially Nurse Susan. They are so happy to see us and ask how we are, getting us into a room; usually a private room, and then Nurse Susan comes up with a fun game for Joshua to play using medical “stuff”. She’s very creative. Lately, though, he’s not been interested preferring to watch cartoons.
I fill out all the necessary forms; which I could do in my sleep. Josh is weighed, has his temperature and blood pressure checked; then is sent back to his room to relax in front of the TV. Sometimes he plays video games in the playroom. Most of the families in Short Stay are having minor procedures done, such as ear tubes, tonsillectomies etc. Once, an irate mom was at the desk giving the nurses a hard time. She wanted to know EXACTLY when her child would be taken in for ear tubes, after all they’d been waiting for hours and her child was hungry. The nurse tried to explain she didn’t have control over the doctors and how much time they took for each procedure and sometimes they get backed up. I watched and listened as they argued and bantered back and forth, nurse and mother. I remembered back some 16 years before when my first born was getting ear tubes. Oh, the worry of sedation and doctors and hospitals. Now I have to laugh at myself back then. How naïve I was and yet my response was so normal. Finally the mother furiously left the nurses station and one of the nurses mumbled how she’d LOVE to introduce that mom to Josh knowing all he’s been through, so the mom could see a really “sick” child compared to a child just getting ear tubes and maybe she wouldn’t be so difficult. I felt torn between both sides and I quietly said, “It’s all a matter of perspective. Perspective is everything.”
After a while, we’ll have our reunion with Josh’s GI doctor. We catch up on each other’s lives, he asks Josh how he’s doing, asks me how Josh is doing, then I sign the consent form. I’ve never been able to stop the cringing in my gut when I sign that form, always hoping and praying everything goes well. Soon Josh is wheeled in his bed down to the second floor into the endoscopy suite. There Josh is met by more wonderful people who know him, have taken care of him and who really enjoy him. That’s where I meet the anesthesiologist sometimes for the first time. Slipping the gas mask over his trach tube, they always let me stay until Josh is completely asleep. I so appreciate this, more than I could ever express. Once he’s asleep, I kiss his forehead, say a prayer, ask everyone to take good care of him and walk out into the hallway to wait. It is ALWAYS emotional demonstrated by my inability to stop the lump in my throat and tears in my eyes. Never have I been able to just breeze through.
Waiting is the worst part and waiting alone is difficult. That’s the way it is now, since esophageal dilations have become routine. My husband has work, the girls are in school and I sit there alone in the hallway, sometimes pacing and quoting scripture, sometimes sitting in the puffy chair just down the hall a ways. I watch people walk by, sometimes I see nurses or doctors or childlife workers I know from Josh’s past care. Sometimes I try to read a book.
Usually, I see the doctor step out of the suite looking for me within half of an hour. A few times they’ve been in there a long time, too long. This is when I know something hasn’t gone well. Josh has an esophageal stricture (a ring of scar tissue in his throat) due to the radiation treatment he went through in February-March of 2005. This treatment was to save his life, killing any residual tumor discovered in his neck vertebrae. Unfortunately, it also caused damage. When the dilation hasn’t gone well, it’s because the stricture has shrunk down to a very small opening making it difficult to dilate.
I’ll never forget the words of one of our pediatric oncologists as she was visiting us in the pediatric ICU. We had just discovered the esophageal stricture and the tracheal stenosis (swelling in his airway), both damage caused by radiation, which required the doctors to give him a g-tube, so we could feed him and a tracheotomy so he could breathe. Her eyes were full of tears as she looked at me and said, “Sometimes the damage we cause through treatment for cancer is horrendous. Only you can tell us if it was worth it or not.” I contemplate these words often.
The GI doctor always shows me the picture he snapped of Josh’s esophagus before and after dilation. We discuss a little more about Josh, how there’s nothing in the medical world to heal his throat, how we just need to continue dilating so that the esophagus does not close completely. If this happened we would have to do emergency surgery and esophageal surgery is very tricky. After consulting numerous doctors about the stricture, these words stick in my mind, “Esophagus tissue is very unforgiving.” In other words, we could try to “fix” it with surgery, but there’s no guarantee it would work. Josh might end up in the same place, or worse off…or it might be successful. It’s a harsh decision for my husband and I to make. Right now, we are in no hurry.
As we talk, Josh is wheeled out of the room and down to the basement and into pediatric recovery. He’s still asleep. I head down there as soon as I can letting the anesthesiologist know I want to come into the recovery room as soon as possible. The nurses in recovery all know me well. Typically they don’t let parents in until the child is awake. But I’ve proven myself over and over again and I know what to do and how to let him wake up and how to suction him and how to question him finding out if he needs pain medicine or not.
Before I can go into recovery, I check in with the volunteer in the family waiting room. Every time I step into that large waiting room, I am assaulted with memories. I glance to the right looking at the small private waiting room on the right and remember sitting there in 2004, praying the biopsy report would be benign. Before he was even out of surgery, the pediatric oncologist came in and uttered these words, “The biopsy showed round blue cell…sarcoma…cancer.” I push those remembrances away as I show my wrist band to the volunteer. It’s always the same woman and I discovered early on she guards her territory well and takes her volunteer job seriously. I try not to speak to her as she and I have had a “run in” once before. She likes control and so do I. Walking back out of the waiting room, glancing at all the people, some trying to nap, some noticeably nervous, I stand in the hallway waiting just outside of the pediatric recovery room doors. The nurses know I’m there and after they get Josh settled, they call me in.
As I walk through the double doors, I note whether it’s full of children or not. Most often it’s pretty quiet and I greet and hug many of the nurses. Sometimes curtains are pulled around the little child’s bed for privacy; sometimes I can see the other babies. I catch up on the lives of many of the nurses and share about our lives. We allow Josh to sleep, making sure he wakes up peacefully. I always check to make sure the anesthesiologist has given him a little narcotic for pain. This makes his wakeup time much more pleasant. If he doesn’t get any, he wakes up hurting and crying. This has only happened once, when I forgot to ask and insist on the drug.
Once Josh is awake and he nods his head indicating he’s ready to go up stairs to see Nurse Susan, we are on our way with the help of someone in transport. We talk with them on our journey back to Short Stay, catching up on their lives as well. Back in Short Stay, nurse Susan makes sure Josh isn’t in any pain, and then offers him a Popsicle or ice water. This is to make sure his throat is not torn or damaged from the dilation. Once he’s drinking well, she takes out his IV, which is usually in his hand, but recently was discovered in his foot. He was NOT happy about that one! Nurse Susan finds the “coolest” band aides there are for 7 year old boys; Batman, Superman or Spiderman are the usual choices. Josh doesn’t even notice when the IV’s being removed anymore. We wait about an hour in Short Stay before we are allowed to head home. I sign the consent form to leave, am reminded to keep Josh’s activity level down because he was sedated and what number to call if he were to develop a fever. A wheelchair or wagon is brought to us and off we go…home! Josh falls asleep quickly that night and I’m exhausted, physically and emotionally spent.
Josh doesn’t feel well for the rest of the day and often on into Wednesday morning. I’ve learned to keep Motrin or Tylenol in his system until Wednesday evening. This makes a big difference in how he feels, but Wednesday can be a hard day for him at school. I remind the teacher he’s had a dilation the day before. Thankfully, she understands. He eats very little by mouth for a day or two, then it’ll slowly pick up and he’ll eat normally. By this I mean normal for him, not what a typical 7 year old boy would eat. He’ll do well for a few weeks, and then he’ll begin eating less and less by mouth. Finally he’ll have difficulty swallowing water and it’ll be time for his next dilation.
Each night we thank God for Joshua's life. Each night we pray for continued healing.
Every six weeks for the last two years we’ve taken Joshua into the hospital to have an esophageal dilation and we will continue as there is no end in sight…