Roxanne Update

First, the good news: Roxy hasn’t has an observable seizure since last Thursday, 11/16. Hooray!! She reached the full dose of a new medication a week ago, and we think it may be doing the trick.

Now, the bad news. Last Friday night, 11/17, Roxanne was admitted to the hospital for a variety of reasons. Her breathing was rapid and congested, and we didn’t know why. She was also having trouble eating, so her intake had decreased to dangerously low levels, making her dehydrated. In fact, she was so dried up that it took a long time and lots of needle sticks for the medical folks to get an IV going.

Roxanne’s interest in food started to wane when she started taking her new medicine. We knew the drug might suppress her appetite, but we were confused when she started sputtering and choking on her formula when we tried to feed her.

Roxy got a chest x-ray on Friday night to make sure she didn’t have signs of pneumonia, which, thankfully, she didn’t. We started to hypothesize that Roxy had aspirated some of her food, which had caused the congestion. To really find out what was going on, Roxy needed a swallow study and upper GI test, but unfortunately, the people that administer those tests don’t work on the weekend, so we were left to cool our heels for a couple of days.

I wasn’t thrilled to have to wait, but I was relieved that Roxanne was getting the care she needed. After the IV, she got a nasal gastric tube – a feeding tube that went down her nose to her stomach. It sounds awful, but after it was in place, Roxanne seemed to forget about it, and she could get her food, hydration and medicine without gagging.

On Monday (11/20), Roxy got the tests she needed. The upper GI test showed that she had acid reflux, which can interrupt her eating. The swallow study used a fluoroscope, (basically a video x-ray) that allowed us to watch how the formula goes down her throat. It turns out that she was, indeed, aspirating a little formula while she drank, but after the specialist thickened the formula, Roxanne was able to swallow appropriately.

We feel very fortunate that we found some answers. If she had “failed” her swallow study, and hadn’t been able to eat, life would have become much more complicated. Instead, with thickened formula and a prescription for anti-reflux meds, we were finally able to go home on Tuesday afternoon. The congestion in her chest seems to be clearing on its own.

Of course, the question is: why is she having trouble swallowing? It could be related to the anti-convulsant medication she’s taking, or it could be caused by the seizures themselves. We’re dealing with a lot of variables, here.

But for now, we’re thankful to have our pumpkin back home. Have a wonderful Thanksgiving holiday tomorrow, and be sure to hug your family.

Roxanne update

Our trip to Johns Hopkins University Hospital was quite an adventure. Baltimore is about an hour from our house, but it’s so different from the DC area that it feels like another country. (To add to my disorientation, I’ve been watching the HBO series, The Wire, that shows the ugliest side of Baltimore.) So there we were, a family of suburbanites driving through one of the grittier parts of the city in our hybrid car, wending our way to the hospital.

Johns Hopkins is mammoth and crowded. When we first entered the outpatient clinic, we stood in line to get our “patient card” – a charge plate with Roxanne’s name and patient number. We were directed to the neurology floor, and had to wait for an elevator that was empty enough to accommodate our (smallish) stroller. On the neurology floor, we literally took a number, like at a butcher shop or the DMV, to wait to be checked in. This is when it became clear we were very small cogs in a very big machine.

Despite all that, the care we got from Dr. V’s team was excellent. Her associates took Roxanne’s history and collected her test results (from her previous hospital stay) for Dr. V to review. We had heard that Dr. V could be dismissive and abrupt, so I was surprised at how warm she was, and how very sweet (and grandmotherly, I might add) when she examined Roxanne. However, when it was time to discuss a plan for Roxanne’s care, she became businesslike, and spoke quickly. We had to be on our toes to keep up, but thankfully, we were prepared.

I don’t want to go into a lot of detail here, but Dr. V feels that Roxanne’s seizure condition, Infantile Spasms (IS), is not a typical case. Roxanne started having seizures in her first month, not fourth, like most other children, plus her EEG pattern is different than typical IS. The good news is this might mean her seizures are less severe, and therefore, less destructive.

What’s next? Roxanne needs to have another EEG and other tests to narrow down the cause of her seizures, while monitoring her current medicine and considering new drugs. We’re not sure if we are going to need go to JHU for the tests, or if we can do them here in Virginia, but we’ll figure it all out soon, with the help of Dr. Y, our local neurologist. We could very well end up checked back into Fairfax Hospital, where this all started.

Other good news is that over the last couple of days, Roxanne has had fewer seizures per day than ever before, and her mood has been great! She has been smiling, cooing, and wiggling like the wonderful, happy baby she is. THANK YOU to everybody for all your prayers, healing visualizations, etc!

I will try to capture more smiles, but for now, here is Roxy in a moment of repose. Yesterday was a big day.

Roxanne update

Roxanne's smile is back.

During the last 3-4 weeks, while she was on the most powerful/toxic of her medications, Roxy stopped smiling. Now that she's off that drug, she's reclaimed her expressiveness and playfulness. We are so happy!

She's still having several seizures per day, and we've gotta deal with that. But for today, look at that smile!

Roxanne update

Roxanne has been much mellower recently, thank God. She's sleeping better, if not longer, and when she's awake, she's not too crabby. Whew.

In anticipation of Dan's business trip this week, I rallied the local troops to help with her majesty. Thank you to JL, MC, JS, GP, STG, and MZ for your eagerness to help and graciousness in giving us your time. As a result, I'm feeling pretty good today!

Along those lines, I've heard from a couple of friends who are feeling badly that they can't do more to help. Please don't worry. Everybody helps when and how they can, and it's all good. If what you can do right now is pray for us or send emails, that's wonderful and much needed, too.

Next week is our consultation with Dr. V, the epileptologist at Johns Hopkins University Hospital. We don't expect any quick answers, but Dr. V might be able to help us better understand why Roxy has seizures, and options to control them. Please send your prayers/visualizations for healing/mojo to us next Tuesday, 11/14.

Happy birthday, Albert

Today would have been my brother Albert's 30th birthday. Every year, I celebrate the day that began his life, and do something to keep his memory alive.

The photo above was taken in 2003, shortly before Albert's 27th birthday. It was the last time I saw him before he killed himself a month later. Nobody knows why he did it, and I've learned to stop asking why. Instead, I remember how much I loved him.

As much as I miss my brother, I have to remember that he's just one among thousands. More than 30,000 people die from suicide in the U.S. every year, and hundreds of thousands are left to live with their loss. This year, I've made a donation in Albert's memory to the American Foundation for Suicide Prevention.

As I celebrate my brother's life, I hope and pray that if there's another guy like Albert out there, he will remember how much his friends and family love him.

Happy birthday, Albert.

Roxanne Update

Roxy is crabby. Super crabby. I don't know if it's the change in medicines or just the 3-month blues, but she looks like this a lot.

On the upside, her seizure count continues to be much lower than prior to the change in meds, so I'll take the crabby. The thing I don't understand is that these drugs are supposed to be sedating, which to me, means sleepy. Nope.

Sigh. (You'll notice there isn't a photo of me here.)

Roxanne Update

Roxy’s recent visit to her local pediatric neurologist, Dr. Y, went well. After a long discussion about pros and cons of different drugs, Dr. Y, Dan and I decided to change her regimen. The most toxic of the medicines, the one that suppresses her immune system, just doesn’t seem to be working, so we're weaning her off it. We're also switching another one of her drugs. During this ramp down/ramp up stage, she is on 4 different drugs, but we feel it’s worth it to reduce the number of seizures she has per day.

After just two days of the new drug mix, she had a much better day today. Seizures are down, her color seems better, she is eating and sleeping better, and generally less crabby. We aren’t getting too excited yet, but we are blessed to have had a good day, and pray for many more!

Dan and I are still holding up pretty well, but have started to realize how very long this road to recovery will be for our family. I’ve now begun to explore ways to enable me to get more than 4 hours of contiguous sleep (and sometimes cumulative! Ouch!) per day. I call our project “Operation ZZZs” and feel it’s the key to my continued good health. We’ve talked to our doctor about getting a nurse’s aid for respite care, and he is working on it. In the meantime, if any local DC folks know about options in this area, please let me know.

In a nutshell, things are improving. Thank you for everything you do to help us through this. Until next time, please continue to keep Roxanne in your thoughts and prayers. She is so sweet.