What's been up

It's been a long time since I posted an update about Baby Roxy. A couple of friends got in touch, worried that we were back in the hospital, but thank God, we aren’t. Things have actually been pretty mellow.

My mom is still here, and stays until January 10th. I’m getting way too accustomed to 8 hours of sleep per night, but I don't think there is any way to prepare myself for sleep deprivation, so I'm just going to ride this train into the station. It was great to spend Christmas with my mom – that hasn’t happened in over 5 years.

Since early December, Roxanne and I have seen four different medical specialists. I made a point of finding doctors associated with hospitals other than Fairfax, because I don’t want to go back there. Don’t get me wrong, the medical care Roxy received was excellent, but working through Fairfax Hospital's administrative quagmire is a nightmare that I don’t want to revisit.

This month, we had an appointment with a Fairfax County Early Intervention Infant and Toddler Program coordinator. She and her colleagues evaluated Roxy to see what kind of therapy she needs to maximize her developmental potential as she deals with epilepsy. The good news is that her fine motor skills are, well, fine. One of her favorite things to do is play with linking rings: grabbing, shaking and flinging them around. Her gross motor skills are delayed because her neck and torso muscles are weak. She can’t hold her head steady for long, and she can’t roll over. Roxy will be getting physical therapy to help in those areas, starting as soon as all the paperwork is resolved.

We also saw a pulmonologist (lung doctor) this month. He was a new doctor for Roxanne, but must have been having a slow day, because he spent and hour and a half getting her full history and making recommendations. (Aside: it was kind of cool/strange that he was about my age. I guess I’m finally old enough that really smart specialists have made it through school.) Anyway, he was happy that Roxanne’s breathing is clear, which he attributes to the ND tube feedings: no aspirations going down or coming up. The problem is that she can’t keep the ND tube for more than a couple of months – it’s meant to be a temporary solution. The doctor felt strongly that she will need a G-tube – a feeding tube directly into her stomach, plus a nissen fudoplication – a surgical procedure that stops reflux.

We later saw a GI doctor at Georgtown University Hospital, plus a feeding tube specialist at Children’s Hospital, who both agreed that unless Roxanne’s swallow and/or reflux improve dramatically over the next few weeks, she will need a G-tube and nissen. We have an appointment to go see a pediatric GI surgeon at Georgetown in mid-January.

We went to see Roxy’s most excellent pediatric neurologist, Dr. Y, recently. He is still tweaking her drugs, trying to find the right mix that stops the seizures but doesn’t sedate her so much that she doesn’t develop well. In the meantime, we were hoping to have heard back from Dr. V, the epileptologist at Johns Hopkins, with recommendations, but we seem to have fallen into a black hole there. We have an appointment to see Dr. P, an epileptologist with Children's Hospital, in the new year.

Despite all of the above, I still say that things have been pretty mellow. Roxanne does have a few seizures per day, but they are mild, and she recovers well. Now that is less sedated, Roxy has more play time, where she squeals, waves her arms, kicks, and shakes her rattle. She is usually very happy, with a quick smile for me, Dan and Grandma Sharon. We are taking it one day at a time.

Merry Christmas to all, and best wishes for the new year.

The Shortest Day

The Shortest Day

So the shortest day came, and the year died,
And everywhere down the centuries of the
Snow-white world,
Came people singing, dancing,
To drive the dark away.

They lighted candles in the winter trees;
They hung their homes with evergreen.
They burned beseeching fires all night long
To keep the year alive.

And when the new year's sunshine blazed awake
They shouted, reveling.
Through all the frosty ages you can year them
Echoing, behind us--listen!

All the long echoes sing the same delight
This shortest day
As promise wakens in the sleeping land.

They carol, feast, give thanks,
And dearly love their friends, and hope for peace.
And so do we, here, now,
This year, and every year.

Welcome, Yule!

--by Susan Cooper, 1977 http://www.thelostland.com/biography.htm
written for The Christmas Revels
http://www.revels.org/

happy baby = happy family

Roxanne is doing much better today. It seems the virus theory is playing out, and she's recovering from it. Why not? If the cool kids at Catholic U can succumb to a stomach bug, why not Roxanne?

Can I also mention that she hasn't had a seizure since Wednesday? Today, she's alert, bright eyed, cooing and chewing on her bib (nice texture). She's happy, I'm happy. Oh, and I'm more well rested than ever. Super Grandma-peds-nurse-she-can-do-it-all has been taking the overnight shift since she got here. Priceless.

Are we calm now?

I didn't have time to mention in my previous post that I went to see this year's Christmas Revels on Saturday night. TOWWAS got me a pair of most excellent tickets, and I brought my mom to the show, almost straight from the airport. We loved it! Granted, it was particularly awesome to see TOWWAS, Miss Shirley, G Dog and many other friends on stage, and the quality of the singing and the Early American music and dancing knocked my socks off. There were so many people that I like and recognized from the show that I'm sure I annoyed my mom whispering, "that one -- in the green with the white apron, that's so-and-so who does such-and-such." It was such a beautiful contrast from the hospital to be out in DC, at a theater, enjoying a professional-caliber show. If you dig folk music, go see this show. It's not community theater -- it's waaay better.

Back to reality: I didn't mention in my previous post all the equipment we came home with to care for Roxanne. The main piece: feeding pump and tube. She is still getting all her formula through a tube in her nose that delivers nutrition, hydration and medication (including her seizure medicine) directly into her duadenum. The pulmonary and GI doctors aren't willing to let her try taking food orally until her lungs heal from her previous aspirations. If she still has swallow problems, she could aspirate food going down, and if her reflux is bad enough, she could aspirate food coming up. I have an appointment with the pulmonary doc in a couple of weeks, and we'll see how she's doing. In the breathing department, she came home with a nebulizer for twice daily breathing treatments, a pulse oximeter (for overnight and spot checking) and oxygen (if the pulse ox says she's too low). I'm trying not to let all this crap overwhelm me.

Today, Roxanne is doing better, but for the last couple of days she's been throwing up several times a day, which could mean problems with her ND tube. After begging for an appointment, we finally got in to see her GI doctor today, and had her tube checked. Everything seems to be in place, so that's good. The doc thinks she might have a stomach virus, and it should pass soon. Ugh. Does the drama ever end? No? Great.

Does anybody want to come decorate my house? Christmas is #482 on my list of things to do.

Despite my crabby tone, I'm very grateful we didn't have to go back to the hospital today. I'm seriously considering making a switch from her previous hospital to Children's in DC, but I don't think I have the energy to do so right now. So please wish for calm days ahead, no hospital stays needed. Perhaps a Christmas miracle? That would be good.

We're home from the hospital!

Although my big group meeting with Roxanne's doctors didn't happen (only two showed up), the rest approved her discharge, so we were sprung at 5pm on Friday. I'll take it!

It's good good good to be home. My mom flew in Saturday afternoon, and she's already helping enormously. What a relief.

Thank you for all your calls, emails, prayers, food, and warm wishes. We're hanging in there.

Keep your fingers crossed

There's a possibility that we might get to take Roxanne home this weekend. Please send your thoughts, prayers and good mojo, because I'm going completely nuts in the hospital.

Staying at the hospital is similar to what I've heard living in prison is like. You have no privacy, no full darkness for sleeping, no quiet, and plenty of unpleasant surprises. You can't leave until a staff of people say you are allowed to do so, and before you do, you become invisible. People can pop in and out of your living space at will and do just about anything they want to you, unless you are smart and strong enough to fight back.

Today I became full-out Bitch Mommy. I'm sick of being in the hospital and I've called for a group meeting of her doctors (planned for tomorrow afternoon) to explain exactly what progress needs to happen for Roxanne to be set free. I've asked again and again for days and days what plans need to be put in place for caring for her at home (equipment, etc.), what milestones she needs to achieve, and until today, I've been ignored. Today, I started ranting at about 8:00am, and didn't stop until I had a moderate level of satisfaction, at about 2:00pm. Progress has been made. I dare them to mess with me tomorrow.

Roxanne in the hospital. Again.

Beware: this post has a lot of medical blah blah blah in it. If you hate that kind of thing, here's a synopsis: Roxanne is stable, but we don't know when she's coming home.

Here's the long version.

This is Roxanne's third trip to Fairfax Hospital. The first was October 10-15, when she was first diagnosed with epilepsy/infantile spasms. Then she was in November 17-20, with eating/swallowing problems.

Most recently, she was admitted Wednesday, November 29 and is still there today. As I mentioned in my previous post, she has problems with swallowing, reflux, and low appetite. She was just scraping by with her intake until she caught a cold last week, which made her totally uninterested in eating. Also, her breathing, which was already too fast (probably because she was still recovering from aspirating food), became labored.

She was immediately put on IV fluids and oxygen to help with the hydration and breathing. She also got another nasal-gastric tube (NG tube) to supplement the nutrition she should be getting, but won't take from a bottle. I have to admit, the first couple of days in the hospital were a relief, just seeing that she was able to breathe easier and that I didn't need to worry about her hydration every minute.

Originally we thought as her cold/virus went away, she would feel better, get off the oxygen, and take more food from her bottle. We were mentally ready for her to go home on Monday, but she had other plans. She started coughing and gagging throughout the day, her breathing was getting weird again, and she needed her oxygen to be turned back up to bring her oxygen saturation to an acceptable level.

At this point, the gastro intestinal (GI) doctor and the pulmonologist (lung doctor) got involved in her care. The hypothesis was that while she is probably not aspirating any of the small amount of food she was taking by mouth, she seemed to be aspirating her reflux. This is very bad. When we heard "possible irreparable damage to the lungs", Dan and I were ready to do whatever it took to improve the situation.

The temporary solution is a nasal-duodenum (ND) tube, which she got yesterday. It's the same tube that ran from her nose to her stomach, but it's now placed to empty past her stomach, into the upper part of her small intestine, the duodenum. The whole idea is to skip putting food into her stomach, which should eliminate the reflux problem, which should eliminate the aspiration/breathing problem. I'm amazed that she can digest food without the benefit of swallowing and processing it through her stomach, but evidently, the human body is full of redundant systems.

Now we're just waiting to see how she does on the ND tube. If she's able to tolerate the feedings with the ND tube without getting sick, and her breathing improves enough to take her off oxygen, then we can probably go home. We will have to continue to feed her through the ND tube, with perhaps some by mouth, depending on the situation.

The question that keeps me up at night is why is all this happening, particularly now that her seizures are under control? The short answer is that nobody really knows. It could be the seizures. It could be the underlying cause of the seizures, which we still don't know. It could be the medication that we use to control the seizures. It could be all three. I feel like a total chump just reacting to all the problems that are springing up like weeds. I don't know what will happen next, and I'm running out of energy to deal with it all.

Dan and I are doing our best to keep ourselves together through the stress. Many, many thanks to MZ, JZ, MC, GP, YO, and other friends that have visited, kept us company, and brought us food. We couldn't do it without you. Special thanks to JL, my dear friend who has spent so much time at the hospital to allow Dan and I to get a few more hours of sleep.

Here's the best part: my mom is flying out this Saturday to help. I feel like the calvary is riding into town. I was doing fairly well on about 5 hours of sleep per night, but as I need to work with more and more doctors and make more intense decisions, I'm stretched way too thin. Dan's company is going through some major changes, so taking time off right now would be a major career gaffe. My mom, who just happens to be a pediatric nurse, will help take care of all of us.

I'll end on a happy note. Throughout all of this, Roxanne is continuing to smile at me, my friends, and all her nurses and doctors. She kicks and squeals with delight when we make faces at her. She's a generally happy kid, especially now that she's feeling better. I've tried to get another photo of her smile, but when I point the camera at her, she gets serious and looks at the camera with curiosity. But trust me, her smile makes my day.