A certain number of people have told me that off and on, and it is a kindness and a kind compliment, and I certainly take it as such... but let me say this. Take me back before September 1996 before Ben was born. Give me a run down of those next 18 years with Ben (and God only knows what lies ahead of us yet here in 2014), tell me this will be my future life... and I would have run away faster than Jonah ran from God. And likely some sea creature would have swallowed me up and spit me out on some foreign shores to face my problems :)
There is NO way, absolutely NO WAY apart from having Ben and his health and mental issues thrust upon me ignorantly, that you would have ever gotten me to say that "Oh, sure, I can handle this. Not a problem."
Ben was born after (get this!!) 50+ hours of labor. I went into labor on September 6th at 2 pm, a Friday afternoon. I remember that first pang distinctly. Kids with Down's tend to be slightly early, and he was 36 weeks and a little more. Ben was born at 1 am on September 9th. It was not grueling labor, it was all very uneven, did not go anywhere and because of his heart condition, he was a c-section Baby.
His apgars were 4 and then 6 at 5 minutes. He immediately was put on oxygen, whisked into the NICU and stayed there for (I am losing count of these details) I think 23 days. He was of course not eating because with his cleft lip and palate he could form no suction by which to take in nourishment, so he had a naso-gastric tube inserted through his nose into his stomach, and it stayed there till he was 8 months old when we had a permanent G tube placed surgically (that is another story). I need to back up on that. The naso- gastric tube was taped to the side of his face. He often pulled it out and I learned to be a pro at inserting it into his stomach and listening with a stethoscope at his stomach for the woosh when I pushed air in :) Also the latex tube hardens with the stomach acid, so it needs to be replaced regularly. Ben was syringe fed around the clock every 2-3 hours for the first 3 months of his life. (Yes, I slept in 1 hour shifts, then up to pump breast milk, fortify it with formula, pump it into Ben, then sleep... etc.) How did I do it? I HAVE NO IDEA.
I had 3 older kids ages 18 months, 3 years, and 6 years old. That time until 3 months when Ben had his first open heart surgery is rather foggy. And somehow I still got up in the morning, dealt with the other kids, drove to appointments.
The week Ben got home from the hospital my daughter Kirsten who was 3 decided to have a major allergic reaction to something, and no matter what we did to treat her it would not go away. She was speckled in little red dots from head to toe, the worst rash I have ever seen, and we spent weeks trying to clear her up, so in addition to Ben going to Cardiology, new born visits, gastroenterology, sick fever visits, nutrition visits, endocrinology visits, ear nose throat, plastic surgeon (for cleft stuff) as well as orthodontics for his cleft palate... I had to cart a 3 year old who looked like she had a bad case of measles to dermatology. Kirsten eventually cleared up by being put in all cotton, special diet, no contact with any surface that was not 100% natural cotton etc, and life settled down with her, which was good because Ben continued to be an interesting challenge. He had a heart monitor at night (my request so I could sleep soundly unless it beeped or UNTIL the alarm woke me up for the next feeding) He developed some interesting food intolerances resulting in intestinal bleedings and ended up tolerating only baby formulas that were broken down to their constituent amino acid forms. Did you know that amino acids really really stink?? I mean baby formula does not smell that great but amino acids are awful. Who cares, it all goes in the tube and down in his stomach, he never has to taste it, so no harm done. The tube from his nose down was another interesting challenge because it left his sphincter muscle always open from the stomach to the esophagus (we paid for that issue 2 years later with a fundoplication procedure) and he quickly developed acid reflux and refluxed himself into a couple of lying down aspiration pneumonias as well as a bright red lower esophagus . We paid dearly for that ng tube later, and always wondered why nobody talked to us about placing a permanent G tube in his stomach much earlier to lessen his reflux issues. But never mind, it was so busy, probably everyone thought someone else had talked to me about this issue.
Ben's morning meds were such a dose that quite frankly he was full just with the mini syringes of digoxin, lasix, aldactone, propulsid, ... I forget the others, but at one point I remember counting 15 little syringes I had to pull up for him in the morning. And quite often they came back the way they were sent down as Ben must have been so nauseated by the meds he could not keep it down. And after meds filling him up somewhat, he was not able to keep down any formula I syringed into him via the ng tube either. Those were precarious days, always on the brink of hospital admission, and quite often in the hospital.
I honestly don't know how we got him to 3 months and open heart surgery. I think back and I remember meds, I remember being busy, I don't remember the other kids much, though they were there, but I don't remember being stressed either. It was more of a , OK if this is what we have to do. This is what we will do. And I was hyper conscious that a calm me meant calm kids and calm baby. So lots of laughs. NO expectations of any day, other than the prayer for survival for all.
From the time Ben was discharged from NICU till he went for his first open heart surgery, we went to cardiology at least weekly, many days daily. Ben was born with a heart with no walls, and the valves (tricuspid and mitral valves) were fused together into one dysfunctional valve. So he basically had one big heart chamber which simultaneously squeezed blood in all directions to his body at the same time, rather than our ordered normal hearts which differentiate oxygenated blood from blood returning to the heart that needs to go to the lungs to become oxygenated. HIs heart was highly inefficient. I think it is a small miracle that any person can live with a heart like that.
As a result, he was rather bluish and his oxygen saturations were poor all the time. The surgeons always waited till 3 months if they could, to operate on these hearts because the outcomes would be better if the heart was bigger. And so, also with Ben, in spite of his fluid gain in all his limbs (He looked fat but it was all water) and his poor functioning, no energy to swallow, hardly any energy to cry, he got to wait for 3 months for this all important surgery.
During that time he was mostly tired from this poorly functioning heart which took all his energies away, and he mostly slept, and if he were awake and had the energy he mostly cried because of his red esophagus that really hurt him rather badly. Any time we needed an echocardiogram to make sure his heart was not getting worse (and that was about once a week) he had to be sedated because he would scream so badly with the cold gel and the transponder moving around on his chest that they could not see anything on the echo, otherwise. My older kids were as home in the cardiology waiting room as they were at home in our living room, it seemed. And the kind people in the office always played movies for the older kids so the procedures were not too odious for them to get through.
Open heart surgery, what can I say. It was Ben's first surgery, because he was too frail to have any of the other things he needed done, until the heart was stable. We had already had our daughter Kirsten in a minor operation before, ditto for our son Nikolas, and I had had 4 c-sections, so we were veterans... or so we thought.
But no. Open heart surgery is above and beyond. Come the day before. Do tons of blood work, talk to a million specialists. Be told all the terrible things that can go wrong. Get canceled either because your kid is too this or that, and reschedule, or get canceled and rescheduled because a kid is born with hypo-plastic left heart the night before-- a syndrome that cannot wait, while my kid could wait.
When you finally surrender your kid to open heart surgery, you wait an eternity. I think we turned Ben over at 6 am, and I think he came out around 2 pm... or at least, we were allowed to see him again at 2 pm-- in the cardio-thoracic intensive care unit, where he is on a ventilator, hooked up with what seems like a million leads, and completely unresponsive to anyone. It is a rather heart wrenching sight to see a kid in that condition, let alone your own baby, but you get used to it. And you hang there for another 5-10 days before your kid finally goes home, but back up. Cardio-thoracic intensive care was at that point at CS Mott, one big room or two, where there was a nurse for every 2 patients, unless your kid needed more intensive care. Result--- any time any kid was in crisis, the whole unit shut down and all parents were kicked out, so I spent a lot of time not allowed to see my kid even when he was doing OK. (I am not saying this resentfully, believe me, I felt for the parents who had a kid who was struggling,but the arrangement was difficult to live with.)
The first big step is getting your kid off the ventilator and letting him breathe on his own. The first try with Ben did not work, and they had to put him back on the ventilator. It is stressful to witness this and be so helpless. You just sit and pray. Those first 3 days after open heart surgery are tenuous, you want to fast forward, but of course you can't and time moves like frozen molasses. I want to add here that at the time I was not an experienced hospital parent as I became later. I did not realize how long it takes for a specialist to show up, or how normal it is for things ordered to show up HOURS after they were asked for. It took me all of school year 1996-1997 fall and spring to develop my hospital patience and having my hospital bag ready at all times, where you bring all sorts of things to entertain yourself while your kid is on a ventilator: computer, book (and yes, I was one of the few people with a big clunky cell phone back then. Big enough to serve, also as an instrument of self defense, if needed :). This is when I got back in to the habit of knitting, a hobby I had dropped in 1990 when Nikolas was born, and ever since Nick there had been a baby to lay claim to my lap, so no knitting had really been possible. Well, with Ben in ICU on a vent, and mamma in a rocker next to his bed, why not knit? So I took up sock knitting because they are small and portable, and I have been knitting socks ever since.
Well, we survived (both Ben and me and the whole family) open heart surgery, and I won't bore everyone with the details, but we came home from the hospital just before Christmas 1996, and Ben screamed and screamed day in and day out, and did not settle down and all through Christmas 1996 into the new year we were at the cardiologist's or in the ER or in the hospital with this kiddo who just did not seem to come out of that surgery as well as every one had thought he ought. He had pericarditis (inflammation of the area around the heart) and then as that settled, the fevers started spiking and the diagnosis was endocarditis (and infection inside the heart) and then pneumonia from all of the above and who knows what else, and ended up with a second open heart surgery to repair a heart which was damaged because of the infection.
In short, complications, the sort only 5% coming out from that procedure tend to have. But Ben with his cleft lip and palate, kidney reflux, GI reflux, chronic ear infections, gastro intestinal intolerances, etc seemed to go with the 5% always, never with the 95% who fared well. The joke became 'what else can be wrong with this kid?" ... a morbid joke, to be sure, but you either laugh or cry, and my solution is that laughter is the preferred path.
Ben and I became best friends with a number of doctors, from cardiology to pediatrics to GI to urology to the nutritionist, and had the fun experience of having the nurses fight over who got Ben, when he was re admitted and re admitted and re admitted onto the floors both at CS Mott's and also at our local Bronson hospital in Kalamazoo.
I have fond memories of sitting up late in hospital rooms, chatting with our favorite nurses, having doctors save Ben's room for last on the round and then sitting down to chat about everything and anything and of course about Ben late into the night, sometimes past midnight, if the doc was there anyways on call all night. I remember being in the hospital for Easter, Mother's Day, Thanksgiving, Christmas, and having different people popping in with flowers, chocolate, gifts, jokes (and I am not talking family and friends here, though they did it too, I am talking doctors and nurses).
One of the best experiences of having a really sick kid like what was the camaraderie, the sense of being part of a team, where every last person was doing his or her best to help Ben survive (and survival was 4-5 times really the issue--- would he get through the surgery, or get over the infection?) I remember living off of crackers and little else one time because I forgot my wallet at home. Somehow a doctor found out and he insisted on giving me a $ 50 bill and refused repayment... just so I could get something to eat until my family would show up again. -- At one point at CS Mott's I was so run down and sick myself, Ben's one doctor took a look at me and prescribed an antibiotic. I had no time to go off campus and home to see my own doctor 100 miles away. -- I have had people clear broom closets and set up a cot so I could sleep there. One nurse let me sleep next to be in the ICU for a couple of nights because I had nowhere to go (a no no). I have also, of course, slept many a night in a Ronald McDonald House when they had an available room, and whenever I go through McDonald's to this day, if I have cash, I do a donation to the Ronald McDonald house.
I met many wonderful parents in crisis while in the hospital with Ben. During my longest stint in 1998 in the spring, a dear lady and I were like best friends all that spring as her daughter was in forever as well, and we would roll our babies in strollers out into the indoor play land in the middle of the cardio floor and sit and chat for hours while our babies slept in their strollers.
Apart from making Ben well, and supporting him again and again as he sported an infection or needed yet another procedure (he had over 20 procedures his first 2 years), the hospitals (Bronson and CS Mott's) were wonderful places where I learned patience as well as a strange solidarity with fellow parents with suffering kids. A few parents were bitter, angry and touchy (and I understand why), but most of us were positive, hopeful, supported and grateful.
Ben had a lot of brushes with 'bad luck', a couple of honest mistakes, and one situation I would term malpractice. But I would say this. Yes, the 'honest mistake' was life threatening, but..... Basically they were placing a feeding tube in his stomach and they missed the stomach, which generally does not happen, but it happened to Ben. As a result, for about 12 hours we were feeding him formula straight into the cavity that holds the stomach and all the lower organs. Once they figured out what was happening (he was already inpatient for other reasons) he went straight into the operating room, and I was told very honestly that they did not know if he would survive. I wasn't even angry or suit-happy. All I wanted to do was to pray that Ben would survive. The surgeon who made the mistake did not do anything that anyone else wouldn't do. Nobody knew that Ben's unusual canal for placing the tube would act strangely and collapse as it did. It was not the surgeon's fault. And more to the point, in my grieved and bewildered state I recognized that he owned his mistake and did not try to paw it off on other circumstances.
To wrap up. The hospital years were strange, intense, scary at times, but they were also immensely positive in other ways. I learned so much about myself, my own lack of patience, and about what really matters when lives are on the line. I look back at those years with fondness and many wonderful memories with doctors, nurses, and fellow parents of patients. There were moments of tears and fears, but the people that surrounded me (and I was usually alone 100 miles from home) were professional but also human and supportive and caring, and funny, and real, and sometimes angry and frustrated. It was a very real time. I wouldn't trade it.
But to those who say (and they are many!) they could not do what I am doing or what I did: Seriously, neither can I. There is something very real about the urgency of a situation one cannot help. You are thrust in it. You do it. Because you must. Not because you are particularly gifted. Not because you can. But because it IS.
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