Thursday, September 06, 2007

Regarding Daughter Number 1




People acquainted with this blog (which may or may not exceed the amount of fingers I have on one hand) know that I refer to my daughters as Daughter Number 1 and Daughter Number 2. Not only do I use this handy numbering system to keep track of just how many daughters I have, I also use it to keep straight which is the firstborn and which came second out of the chute; hence we have DN1, who is 20 years old, and DN2, who is 16. DN1 is a girly-girl and DN2 is a tomboy, and, for a few years there, DN1 thought her father was terribly uncool, while DN2 still hangs out with your humble servant and shares some of his interests. I think for that reason DN2 tends to get mentioned a little more in this space, but today the focus will be squarely on her older sister.

DN1 suffers from nephritis, a weird kidney ailment that first manifested itself nine months ago by causing her to retain water. At first DN1 thought she was simply putting on weight, but soon realized otherwise when she noticed that the weight she was gaining didn’t distribute itself evenly, concentrating mainly in the legs. One day, for example, she’d wake up and have a normal-looking left leg, while the bottom part of her right sported a disturbing looking “cankle.” Finally her mother took DN1 to see her primary care physician and the next thing she knew, DN1 found herself in Boston’s famous Children’s Hospital for a five-day stay.

Her kidney doctor (whom we shall refer to as Dr. Strangeglove) took a while to diagnose, but finally hit upon nephritis, which simply put is an inflammation of the kidney. The treatment plan called for a low-sodium diet, a daily one liter restriction of fluids, and the ingestion of several strong drugs including steroids. The steroids in particular have had a profound impact upon DN1. They make her moody and can sometimes change the shape of her face. Some days her eyes get puffy and a little slitted, and other times the bottom half of her face and neck gets swollen, as if she had gained weight in her head and nowhere else. Fatigue has also been a big problem, making standing and walking a chore at times. However, through it all, DN1 has kept up an aggressive schedule of attending college and working part time. When school let out for the summer, she picked up another job and has worked nearly every day for the last two months.

During that stay at Children’s Hospital, Dr. Strangeglove led us to believe that this condition — rare in adults — was extremely curable. And, in fact, after a couple of months of treatment, the symptoms did indeed go away and DN1 was given a clean bill of health, allowing her to work out at the gym again and drink as many fluids as she wanted, as well as eating whatever she desired no matter how salty. However, the symptoms soon returned with a vengeance, and this time she and Dr. Strangeglove agreed on resuming the program, only for a much longer period of time and possibly lasting until December.

The drugs she’s been using to combat the nephritis are, as I said, extremely strong. Everyone hears all the bad stuff about steroids these days, how brutal they are to the human body, and here DN1 has been taking them every day like Flintstones vitamins. She of course does not like the drugs and bridles at how physically inactive the treatment plan has made her, but DN1 has toed the line and stuck to the program while trying hard to maintain a tenuous hold on her faith in Dr. Strangeglove’s abilities. However, in the early hours of Friday, August 24, the steroids apparently took their toll on her system.

DN1 woke up at around 1:30 that morning suffering from a severe abdominal pain. She tried to be patient and see if it was just a passing thing, but the intensity wouldn’t let up. Finally she got out of bed and woke up her mother and the two of them made the decision to go to the hospital while I peacefully slumbered on. Once the missus dressed herself and finished all the necessary primping to enable her to be seen in public, she woke me up to say she and DN1 were on their way to the hospital. I responded by saying, “Whuh? Huh?” Then the missus instructed me to go back to sleep which, being the concerned father and dutiful husband I am, I straightaway did. What a dad, right?

It turned out DN1 had a perforated duodenal ulcer, very nasty, and the MRI they used to diagnose it also revealed a blood clot. Now, no one can absolutely prove the steroids caused all of this, but come on, how many 20-year-olds develop ulcers and blood clots on their own? The surgeon performed a tricky and extremely tedious, minimally-invasive laparoscopic operation that left four small holes in her abdomen. Explaining the procedure, he told us that in the old days, back when they just cut people open, that surgery would have taken two hours less to do, but as the recovery time required two weeks more, the extra length and tedium were well worth it. What he essentially did was put a patch on the rupture to the duodenum and declared she would never be bothered by that problem again — the patch job was for keeps. However, DN1 still had to recuperate and, as far as the nephritis went, nothing changed.

It is difficult for a parent to witness discomfort in his or her child. Seeing your kid in the recovery room still loopy from the anesthesia with a tube running up her nose, an IV tube stuck into her arm, and a catheter draining into a bag, you’re torn between the comforting assurance of knowing your little girl is in good hands and the frustration of seeing her laid low and not having the power to fix things immediately, right there on the spot. DN1 is a woman now, albeit a young woman, but in a sense she’s still the baby the missus and I brought home from the hospital back in 1987. When I was 20 I never had a tube up my nose and a catheter running down my leg, so why should she? Everything seemed wrong and unfair.

DN1 wound up staying at Children’s from Friday, August 24, to Saturday, September 1, which is a pretty long time to remain cooped up in a hospital room. Her mother packed up her clothes and moved in with her, at night sleeping on a chair designed to unfold into a bed. DN2 and I made daily visits, occasionally enjoying the fine cuisine offered in the hospital cafeteria, and otherwise making light banter from either side of DN1’s bed in hopes of dispelling the blues that sometimes pervaded the room; DN1, for the most part, was strong and kept up an optimistic outlook, but every once in a while she broke down and cried when rosy estimates of an imminent discharge from her antiseptic prison were proven false. She was a good patient and informed herself well of her problem and assisted the nurses in her treatment. A constant companion to her was “Bob,” the name we gave for the vertical, stainless steel wheeled contraption that had an IV tree at its top and three ticking, beeping machines clamped to its long pole pumping medicine into her body. Wherever DN1 went, Bob went with her: into the bathroom, walks around the floor, everywhere. Good old Bob. Damn you Bob.

DN1 is home now and started college yesterday. She gets fatigued easily and has to pace herself carefully. Twice a day she needs to inject an anti-blood clot drug through a special patch in her abdomen, and, of course, she has the usual assortment of pills to swallow. DN1 doesn’t complain much, but this is a cross to bear, especially for someone so young. I feel very proud of the way she is carrying on and admire her for it. She’s quite a kid.

14 Comments:

Blogger Beth said...

Holy mother of God, John, I think that's about the saddest thing I've read. My eyes are all misted and I don't know what to type here. I have a kid like your DN1 and a son like DN2, except with a penis. Damn, it just puts the little things into prospective.

I hope and pray there is a total recovery for her. She's a beautiful woman.

8:35 AM  
Blogger fakies said...

Wow, that really sucks. I find it interesting that they treated her at a children's hospital. I don't usually think of 20 year olds as children. (only 27 year old idiots) :) Being stuck in the hospital is no fun. The only thing that made it better was listening to my family act like morons as usual. I'm sure she appreciates your company.

Are they keeping her on the steroids?

1:37 PM  
Blogger Natalie said...

My thoughts are with DN1 and your family. How very brave of her to return to college so soon after being discharged, it is a testament to her character. If she is anything like you, she'll keep her chin up, persevere and make the most of it.

6:47 PM  
Blogger rennratt said...

I'm so sorry that she's been sick!

I have found (through personal experience, unfortunately) that the side effects of medications are sometimes worse than the illness they're treating.

May she have a speedy recovery - and may this GO AWAY!

6:49 PM  
Blogger LL said...

Well... that doesn't sound good. Give her my best, and as an alternative... (excuse me whilst I pick up my "Miracle food cures" book and look up neprhitis)

Ahhhh yes... here it is. Now I'm not a doctor, but here's something that I would try, were it me

"In ridding the body of excess fluid (edema): 'Dandelion leaf tea is one of the finest diuretics known, at least equal to any known drug medicine,' says Dr. Tierra. 'Thus dandelion leaf tea can be taken for fluid retention, cystitis, neprhitis, weight-loss and hepatitis..." and "Dandelion tea is completely harmless even if taken for extended periods"

7:22 PM  
Blogger SzélsőFa said...

I'm left speechless.
What are the chances of getting another doctor for her kidney problem? Steroids...OMG.

12:03 AM  
Blogger Tony Gasbarro said...

Schprockie! That is such an awful story! And it's "toed the line."

But seriously! Please give DN1 a hug from me. And while you're at it, give DN2 a hug from me, too! and another!

Okay, sorry. I did say, "seriously," didn't I....

That royally sucks. I hope she is able to get the thing stabilized and controlled, if it's not at all curable. Nothing sucks more than a vibrant soul being chained to the earth just to make life bearable.

On the upside, now she can hit the gym and get a body like The Guvuhnator, "Ahnold."

9:18 AM  
Blogger Kathleen said...

Oh, that poor chica. I know how hideous steroids can be having taken them when I had shingles and getting the puffy face and then having a severe reaction back in May that had my blood pressure going through the roof.

I shall keep you and your family, particularly DN1 in my prayers.

Stay strong, Schprockie.

9:57 AM  
Blogger Scott said...

I noticed the "toed" thing too, but I don't have to straighten you out anymore.

The helplessness of your situation really got to me, because of course I imagined one of my sons in the same situation. It would break my heart too, and my wife would be an absolute wreck.

My wife would never let me sleep through any hospital visit. You got one of the good ones, Mr. Schprock.

11:13 AM  
Blogger tiff said...

Oh dear. That's no good, and no fair.

here's another set of good wishes for you all!

3:50 PM  
Blogger Flash said...

Wow, my heart is with DN1, and I hope she recovers soon. She's way to beautiful to be suffering like that.

6:08 PM  
Blogger Ben O. said...

That she is . . .

I'm impressed with her already.

Ben O.

9:45 AM  
Blogger Beth said...

Wherever DN1 went, Bob went with her: into the bathroom, walks around the floor, everywhere. Good old Bob. Damn you Bob.

Even when I read this again, I got all choked up because I felt that thing -- the helpless parent thing I just can't explain.

I came back to ask if this was at all curable and if you could give updates. Even through e-mail. (perfectneurotic@yahoo.com) If you're ever not too busy and things change.

7:05 AM  
Blogger Kathleen said...

I'm with Beth...hoping for an update. Still in my prayers.

3:16 PM  

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