Monday, May 15, 2006

It's always something

Warning: The content of today's entry might strike your ear as, well, whining. I'm Mommy to a sweet, beautiful baby when so many of my infertile compatriots are still struggling toward motherhood. I do know how very lucky I am to have my Maddy.

But.

It really is always something, with a special-needs child. Maybe with any child -- my experience is limited, since Madelyn is my firstborn. But there always seems to be some issue we're struggling with. Right now we're getting unusually high catheterization volumes, meaning she isn't wetting her diaper on her own as much as she was. And she's having trouble moving her bowels; we get either too much or too little.

Bowel and bladder problems are common and we were warned about them, but nobody told me how aggravating it is to figure out what's wrong, what to do about it, whether what you're doing is working or not working, and to communicate same to the nurses, who will talk to the doctors, who will talk to the nurses, who will get back to you on some unspecified date, all while your child is suffering. And if anyone had told me that my husband and I would have half-hour conversations about whether a diaper is "damp" or "wet"--!

So I'm on the phone all the time with the urology nurses, and with neurosurgery too, because it can't just be as simple as dealing with the diaper issues and moving on. No, changes in bowel and bladder function can be symptomatic of a problem with Madelyn's spine. Every little question requires a long game of phone tag and most often a trip to the pediatrician's office, just in case. In case what, you ask? In case Madelyn's fussiness and vomiting are symptomatic for shunt malfunction. (Answer: No, she's got the flu, you foolish Mommy.) In case her huge cath volumes and constipation are symptomatic for spinal cord tethering. (Answer: Even if it is, we won't do surgery until she's four to six years old. Talk to Urology and don't darken our door until August.)

It is always something. We're muddling along, and we get good news now and then -- her sleep study showed greatly improved statistics for her apnea; her vocal cords are completely normal, and so on. But then we'll get a diagnosis of torticollis and it's off to physical therapy once a week, where the advice is frustratingly vague: "Hold her in the opposite arm when you feed her."

Or it will suddenly occur to me that the medications she was started on in January were dosed according to her weight then, when is roughly half what she weighs now. No one has followed up with us on those medications. So I'll start new games of phone tag, and it will turn out that yes, she should have had a new dose of the antibiotic. You know, the one that is protecting her kidneys from permanent damage. "Oh, didn't Dr. E--- talk to you about that?"

No. He didn't.

My stomach is churning even as I write. I can't find words adequate to describe the quality of the worry that I feel, all the time. I've written before that worry is like little rat teeth. But this worry--that I'll overlook or mismanage something crucial to my baby's health--is like a millstone sitting on my chest, slooowwly crushing the breath out of me. Because I've missed things before. I didn't recognize stridor for what it was. And when she was extra-sleepy that one weekend, no alarm bells went off -- I remember being happy that she was sleeping longer than normal, so I could get some sleep myself. Madelyn got early, effective treatment for her partially clogged shunt (sleepiness) and her brain stem compression (stridor) through sheer, dumb luck. Not through her mother's vigilance or knowledge.

It haunts me. I know it'll happen again...other than stridor, the symptoms we are to watch for are just too vague, and too similar to normal baby behavior, for even a watchful parent to easily catch (fussy, sleepy, spitting up, etc.) Here's the bit that drives me crazy: You'll be talking to a doctor, trying to describe how you think she's fussy, but not too fussy, and she's maybe a little sleepy but it's hard to tell, and she could be teething, but there was that weird sound she made.... The whole time you're expecting him to excuse himself and call the cops to report you for munchausen by proxy because this is the third visit to his office in a month.

He'll listen to your whole ramble and he'll say, earnestly, "Well, you know your baby. Do you think this is unusual for her? The Mom is usually right, you know!" And here he grins at you, to show that he's on your team.

Whereupon I want to pounce on him, grab him by the tie, and thump his head against the nearest hard surface, "Look, Doctor, I brought her in here to get your educated opinion, not to tell you mine. If I thought she had a shunt malfunction we'd be at the hospital, wouldn't we? Instead we're screwing around at the pediatrician's office because I don't know what I'm doing. So if you wouldn't mind not adding to my load of guilt and my doubts about my mothering ability? And if you could tell me whether my daughter needs another shunt revision surgery so I can get that on my calendar? Thanks."

Grrr.

I wish I had a ten-spot for every time some doctor has said some version of the above to me: that I know Madelyn best and so I should tell them when there's a serious issue. It's even printed in our spina bifida notebook they sent home from the hospital. On the face of it, it sounds great; the professionals are supposed to pay attention to the child's closest caregiver. But in practice, it's not so great. You go in with vague concerns and -- ping? pong! -- you get vague answers back. And as a bonus you get a reminder that if something is wrong and it isn't identified, it's your fault. Because of course, the mother ought to know.

And then there are the days when I must don my Billing Clerk hat: I actually laughed out loud when I got the hospital bill for our January adventure...before insurance grudgingly coughed up, we owed nearly twice the value of my first condominium. Or, my Scheduling Clerk hat: There is a yellow post-it on the side of my monitor that reads "M. FU ears, sleep, PT? Ask." It is in my handwriting. Hmm. My ways are deep, very deep, and none shall know them.

So, it's always something. And I worry. It's slowly getting to me...I'm irritable, scatterbrained (more than usual). I've started waking up with an excruciating headache every day, and I have finally twigged to the fact that I'm grinding my teeth at night. This has happened randomly in my life as a sort of exam-week thing. But Maddy's only six months old and I've got what, about twenty years worth of "exams"? I've got to learn to cope with this.

Tonight we're going to our first spina bifida parents support group. I am trying not to expect too much...I'll probably be too shy to vent much, at first. But I am dearly hoping somebody, sometime can tell me how to cope with this steady, grinding pressure without falling apart. I need help.

7 comments:

Millie said...

I hope your group tonight turns out to be full of supportive/helpful people. And you get just what you need.

Thinking of you.

Pamplemousse said...

Glad to hear from you, Bee. Yes, you need as much support as you can get too and I am hoping that the new group will be a valuable resource to you, even just to be able to discuss all the issues you have detailed. A problem shared is a problem halved.

Anonymous said...

Bee, this post is in no way meant to patronize you for your concerns. I do want to share, however, that all mothers of young babies worry about having missed something when it comes to illnesses of their children and feel like they're pestering the doctor. For me, it was concerns about eye infections my son seemed to have a lot of when he was very young.

Rae

Jessica said...

You sound like a GREAT mother. And of course you have to "learn" your way through this. Where there ever classes in school about shunt malfunctions? Not that I can remember. It's completely new territory, and adjusting takes time. Adjusting to having a new baby takes time. You have a lot on your plate simultateously, and you seem to be managing much better than is to be expected, under the circumstances.

Hugs to you & little Madelyn, and I hope that support group will turn out to be helpful.

Richard said...

Thanks so much for including my nuclear transfer post in yr blogroll. I haven't yet read yr blog in great detail, but you appear to have had a wonderful donor egg result to which I say mazel tov & congratulations! We have 3 donor egg babies.

Just wanted you to know that I have an entire section of my blog devoted to Children & Family which contains a good number of posts about infertility & donor egg. These would be the posts about donor egg & these the posts about infertility.

In fact, my wife & I just spoke at a WA. state RESOLVE conference about donor egg issues.

Wishing you much joy & happiness w. your "new one."

Jessica said...

Having a child with Spina Bifida is like having a second full time job! I should know, so many times I watched my mom tirelessly care and worry about me and still take on a regular full time job outside home. The challenge you face each day with a special needs child is never easy, but you do learn to adjust. As for shunt malfunctions there are some great websites you can read and find more information about how to decipher the difference. The bowels and bladder are certainly the most difficult of all challenges you will face. If you ever figure that out it's all down hill from there. May Madelyn bring you many years of joy and love. God Bless you for your tireless effort of being a mom to a special needs child.

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