Thursday, January 14, 2010

Waiting

I am entering month six of pregnancy. I would say that while I am not rolling in joy over being pregnant (pregnancy is not a fun thing for me; babies are another story), I am perhaps a bit more patient this time. After three pregnancies, one learns that waiting is part of the deal. But it is a sweet waiting in many ways. Right now I am still small enough to be able to move comfortably. I can sit and relish the thumbing, rolling, and kicking that feels like a party in my womb. There is the delighted look on H's face when he rubs my belly and calls "Hey Blueberry!" and receives a hello kick. There is the pleasure of folding tiny clothes (are they really THAT small?) and laying them neatly into drawers....the only time they'll be that organized. This is a kind of waiting that has an end. I will not be pregnant forever. There will be an outcome. Hopefully a positive one.

But lately I've been another in kind of waiting. It is a waiting that come from parenting as well but it is a more painful kind of waiting. As many of you know Umberto's EEG came out with some abnormalities while he slept. His MRI was normal which was a relief to hear but the abnormal on the EEG uped his chances of having another seizure. Of course the office assured it was still a small chance, and as it too often the wont of medical offices didn't really give us much information. Essentially we were back in the same spot as before "Wait for another seizure."

Now this kind of waiting does not have moments of joy. It is a tense waiting filled with worry and anxiety. While pregnancy has those moments, they are balanced with a kind of anticipatory hope. This was not that kind of waiting. There was relief with each day that nothing happened but that relief was overpowered by an intense preoccupation with worrying about every little twitch and flicker.

Shortly after the New Year's Eve office visit, Horacio was hugging Umberto good night. He noticed that Umberto's right hand was thumbing against his back. H asked Umberto if he could stop the movement, and Umberto replied that he could not. With a little more questioning, we discovered that Umberto has had this happen a few times. It's caused him to drop things. With a little research we thought that he might be having simple partial seizures. After a frustrating week back and forth with the neurologists office, things seemed to return to normal. For a time, we thought "Okay these are doable. Umberto can live with this. It's not horribly impacting his quality of life." Mostly I think we were tired of the stress of carrying the burden of waiting. Of waking up to every thump, every squeak of the kids' bed. It wasn't that we didn't care or that we didn't worry but more that we just felt that we couldn't live constantly in scrutiny of Umberto. He didn't need that nor could we maintain that kind of intensity.

Yesterday, we drove a bit to satisfy my craving for beef and fries. Umberto fell asleep in the car. When we arrived at the restaurant, he was hard to wake up and seemed more groggy than normal. On the way in, I handed him his comic book. Right outside the door, he dropped it. I turned to him, and watched as he attempted to pick it up a couple of times only to drop it again and again. I'm ashamed to admit that I was getting annoyed thinking he was playing games but then H gave this worried look and I realized he was having an episode. I asked him if his hand was bothering him but he lied and said it was because he was cold. I told him to tell me the truth and he did. I could tell he was scared.

Later that night, we had our usual hectic bedtime. Lots of hyperness, and unwillingness to sleep. Finally they all settled down and I went to sleep. It was a restless night for both H and I. This is not unusual for me but it is for H. He was awake this time. I was coming to, woken by H getting out of bed. I didn't hear the fall but H did. He was up and in Umberto's room in second. He called to me, his voice edged a bit with panic. I rushed in to find Umberto on the floor, convulsing, breathing in grunts, eyes opened. "It's okay." I told H as calmly as I could. I felt anything but calm. I felt like I wanted to run away. Like I couldn't bear to see my child like this again, and underneath that feeling guilt that I didn't feel strong enough to watch this. But neither H nor I let fear rule out. We cleared away toys, made sure he was on his side, cushioned his head, timed the seizure and spoke to him. As before he came out within two minutes, was unconscious for a tiny bit of time, and then spoke to us. He fell asleep soon afterward but woke up to vomit. All the same as before. It was a little eery how much this situation was like the first time. It was even the same day and the same time. Same scenario. He had gotten up to change the DVD in the player. This time he told us a lot more. He said he dropped the DVD and couldn't pick up with either hand. After trying a couple of times, he said his hands started to feel funny, and then he fell onto the ground. So we know now that he gets an aura which is really a blessing as it makes the waiting a little more bearable for him. He also didn't seem as scared. Perhaps H and I remaining calm and matter-of-fact helped him to gain his own strength.

Now we're back in dealing with the efficiency of the neurology office. I am done with them on level. They don't ever answer the phone. When they finally called me back this morning, they told me to up his medication. Umberto wasn't on any medication and when I told the nurse this, she acted like it was my fault. She insisted on calling in a prescription even though I've mentioned several times that we really want to discuss this step with a Dr. I just spent a half hour driving to every CVS around us trying to get the prescription to no avail. The problem is that Umberto likes the Dr he meet the first time, and I really would like Umberto be able to talk to this man. It's now pretty clear that Umberto does have epilepsy, and I'd like to have a conversation with someone about what this means for Umberto and our family.

Thus this period of waiting is over. I suspect that it will never be easy to watch these episodes and as always with children, we enter into another phase of waiting. Medication? Alternative therapies? Will he outgrow it? Is is possible to figure out what kind of epilepsy he has? But when having children one signs up to wait. And of course we have signed up to advocate, gather knowledge and research. Perhaps this will make the waiting more bearable.

6 comments:

John B-R said...

Argh. And double argh that you're having trouble getting the medical universe to work for you. Have you contacted the Epilepsy Foundation of North Carolina (you're in NC, right?) or the American Epilepsy Society? There are bound to be groups of people in your area that can offer support, help in finding appropriate care etc.

Sorry for making suggestions to people who don't need them, but this is what happens when one's daughter is a medical social worker.

Hugs to you all.

Ginger As in Green Tea... said...

Hey John,
I've been on the AES site ever since Umberto had his first seizure and both H and I have done a ton of research. We're going to give his Dr. one more shot, and we want to talk our family Dr as well (they do sleep studies). We're also trying to look for some alternative treatments as the drugs are pretty hard core and we want to use them on as small dosages as possible.

But thanks for thinking of us:)

The Bear Maiden said...

I admit I haven't wanted to read this cuz I didn't want to know. I guess I have the luxury of being spineless.

I'm sorry, Ginger that you have to learn this new routine, deal with this new reality. As far as these things go, it has a timeline(?)... the way my childhood asthma did. I could feel it coming; it had a routine, a pattern I recognized. I could tell when it was going to be an easy episode and be over quickly or when it was going to be long and drawn out. With time, I learned my triggers. I couldn't always stop it, but at least I could prepare myself. And when I got older I learned the medications and only rarely get sidelined.

So as far as these things go, I hope that you and Umberto have this... routine, I dunno. I can't find the right word.

My prayers are with you and your family. And I'm so very sorry you have to deal with the darkside of the medical community. I hope that you will find understanding and caring medical personnel who are willing and able to help you navigate this reality.

There's an online friend of mine... her daughter has many other needs but for a while had many seizures and she learned a lot and met a lot of people... perhaps she can be of some assistance. This is her blog... her contact info isn't on there, I don't think. But if you'd like to pick her brain let me know and I'll get you contact info. She's on FB...

Blessings...

oh, and what joy are those "hello" kicks!!!

Ginger As in Green Tea... said...

Thanks Jesi. I can understand not wanting to know...I feel like that sometimes but alas I have to! I think the worst is reading about the sudden death...rare but still. Argh.

And we've helped Umberto to pinpoint an aura so he knows that he needs to sit down when he feels that. We're hoping that the meds will make it unnecessary knowledge but just in case. And luckily they seem to only happen very early in the morning so he doesn't have to worry about having them while playing etc.

I'll be on you about your friend once we have a more clear vision of what's going on...hopefully after talking the Dr.

Erica said...

I hope you get to speak to the doctor you and Umberto want to see and that you get some answers.

Sending you all a big hug.

Ephémère said...

Ginger, if there is anything helpful I can do, just tell me. I will go to see you as soon as I can, august hopefully.
Love you all