Feeling good

Roxanne has been recovering beautifully since we got home from the hospital. No seizures!!!

Home from the hospital

We’re home! Roxy was released from the hospital yesterday afternoon, and she’s doing just great! It’s such a relief to have the whole ordeal behind us. I knew I was stressed for weeks prior to the surgery, but I didn’t realize how much until we got home and I could finally breathe again.

She’s doing so well, we would love to proclaim, “Hurrah! She’s healed!” but we have a long way to go before we can relax. For starters, she’s still on the same anti-seizure medication that she was taking prior to the surgery. The doctors want to give her brain time to heal from the surgery before weaning her off the drugs, since the surgery itself can cause seizures, as can the scarring. The drugs can impair Roxanne’s ability to learn and think, so we are anxious to get her off them, but it will probably be at least a month before we’re approved to do so.

Also, she might still have seizures in the future. There’s no way to know. Maybe the surgeon missed a tiny portion of abnormal brain. Maybe there are abnormal areas elsewhere that haven’t shown themselves. Maybe there’s a chemical element involved. We just have to wait and hope for the best, and celebrate each good day she has.

And she’s having good days! She smiles and laughs, and even more amazing, she is more alert, focused and … how do I describe it? She seems to be more “there” than before. She hasn’t gone five days without a seizure in months. It must be a relief.

Next, we have to deal with the whole feeding tube thing. We’re hoping that without seizures and medication, her swallow/aspiration problems go away on their own. I need to make an appointment with a specialist to make some plans about that.

But today, YAY! We’re home! Roxanne is healing!

More good news

Roxanne is doing better today. She's able to tolerate less pain medicine, plus her fever is gone, so she's more alert, making eye contact and playing more. She's even gave me a little smile this morning. She's still very irritable, but if she continues to improve at this rate, we might go home tomorrow.

Oh -- how could I forget? NO SEIZURES since the surgery. So good.

Out of ICU

Roxanne continues to do well. The MRI yesterday looked good to the neurosurgeon (no bleeding or swelling), so we were moved from the ICU to a regular room late last night. The move is good news in that the medical team believes she no longer needs the one- nurse-per-patient care she got in the ICU, but bad news because the responsibility for her care shifts largely to Dan and me.

Roxy has a few more quiet, alert periods during the day, but most of the time, she’s really irritable. I think her pain is generally under control (they’re still giving her heavy-duty pain meds), but she’s not happy, and she’s not sleeping well. Part of her irritability might be because she’s been running a fever, which is quite common in post-operative patients. A bigger part might be that people were messing around in her BRAIN just a couple of days ago.

We’re not sure how long she’ll need to stay at Children’s, but unlike our experience at Fairfax Hospital, the doctor told us what needs to happen before Roxy can go home: no new complications in her recovery, her fever needs to go away, and her pain needs to be controllable with Tylenol. Staying at the hospital sucks, but I’m not in any hurry to leave until Roxy is fully ready to do so.

I’m ready to start talking with folks on the phone, so if you want to get in touch with me, the best time to call is before 2:00pm or after 10:00pm. I’m usually asleep in during the late afternoon/evening, which I must say is just weird. I don’t know how night workers do it.

We might be ready for visitors soon -- I'll let you know.

Roxanne update

Roxanne had a good night in the ICU last night and is doing well this morning. She spends most of her time sleeping, but occasionally opens an eye to check things out briefly. The medical staff is controlling her pain well, which is excellent, because I would have gone ballistic if they weren’t.

I won't go into all the gory details of Roxy’s surgery, but one of ways the medical team figures out exactly which portion of her brain needs to be removed is the placement of an EEG grid directly on her brain after they open her up. Roxanne was clever enough to have two seizures while the grid was in place, so the surgeon had a very clear picture of the abnormal area. Her timing was uncanny.

Dan and I are doing pretty well through all the stress. Sitting around in the waiting room yesterday was excruciating, and we were both at the hospital from 7:00am until Roxanne was settled in the ICU at about 7:00pm. I went home and slept for a while, while Dan stayed at Roxy's bedside, then we traded places at about 3:00am. Now we’re taking shifts so we don’t burn out simultaneously. I return tonight around 11:00pm for the overnight shift, and Dan will mostly do the day/evening shift.

I was able to hold Roxanne for a while this morning, which was sweet. She doesn’t look as beat up as I had thought she might. She has a big scar on her head, of course, but they didn’t shave her bald. She is scheduled to have a post-op MRI this evening, and if everything looks OK, they will move her from the ICU to a regular room.

Please continue to pray for Roxanne’s recovery without any complications. Thank you for all you do.

All is well

Roxanne made it through surgery well, and is resting in the ICU. Her neurosurgeon and neurologist were very pleased with the surgery, which lasted 6 hours. I'll provide more details when I'm less fried. But for now, all is well. Thank you for your thoughts and prayers.

MRI

Last night amidst predictions of ice! snow! freezing rain! I was concerned that we might not be able to get to Children’s for Roxy's pre-op MRI. No MRI, no surgery on Thursday. But we made it. When we left home this morning, there weren't too many other cars on the road, so that made the commute into DC easier. Dan drove.

As before, Roxanne did fine under anesthesia for the MRI, and they got the images they needed, with the feducials (markers) in place. What I didn’t know is that she has to keep those markers on her head until tomorrow's surgery, so she looks a little strange. They look like light green Life Savers stuck strategically around the top of her head.

We also had a long meeting with her neurosurgeon to ask questions about the procedure tomorrow, and get more details about exactly what will be happening when. The surgery is scheduled to begin at 8:30am. The set-up period is about an hour, the surgery itself can take 4 to 6 hours, and the wrap-up is about a half hour. So tomorrow is going to be a very long day. Then she’ll be in ICU for at least 24 hours.

Thank you to those who have been sending love. We really appreciate it.

Tube, take two

My last entry was posted Saturday at 2:25pm. I wrote about how calm everything has been with Roxanne, and how she had miraculously kept the same ND feeding tube that had been inserted in early December. (Doctors had warned that the tube might clog, or more likely, that the baby would pull it out.)

Fate thinks those kinds of posts are just SO funny. Just two hours later, at 4:30pm on Saturday, Roxanne rallied her dexterity and yanked that tube all the way out of her nose. That meant goodbye to a nice dinner and movie at home, hello emergency room at Children’s Hospital! Dan and I expected to be there with Roxy about 4-6 hours, a typical ER visit. But wait, it gets better! An ND tube has to be placed by a radiologist under a fluoroscope. No problem, we thought. They have radiologists and floroscopes. But that procedure can only be done by an attending physician, and only residents were there on Saturday night. Really.

Our only option? Roxanne was hooked up to an IV for hydration, and we had to stay overnight until the attending arrived the next morning. They moved us to an observation room, which is more like a hospital room than an ER exam room, with a crib for Roxy and one of those fold-out chairs for me. Dan and I agreed there wasn’t much point in both of us staying, so I spent the night, trying to catch catnaps in a noisy, cold, uncomfortable environment. I had forgotten what a joy it is to spend the night at a hospital.

Roxy and I were brought up to radiology around 8:30am the next day, but the doctor had trouble getting the tube into the right place in her duodenum, because the area was irritated. Roxanne was mightily displeased with being strapped down and having a tube put down her nose, I can tell you. We let her rest for a hour or so, and when the doctor checked again, the tube had worked its way into the right place. We finally walked out of there around noon on Sunday.

In the photo below, Roxanne displays the spoils of her handiwork. You can see the new tube is taped generously. I’m considering putting mittens on Roxanne so she can’t pull this one out. Aaaaaaaaaaaaaaaargh!

Counting down

I can’t believe it’s been over two weeks since my last post – sorry about that. Dan was out of town for business for most of the last two weeks, so I’ve been preoccupied. My awesome friends JC, MC, S/DTG, S/GH (plus others) were a huge help with feeding me and keeping me company while Roxanne and I were on our own.

Roxy is doing really well. Over the last couple of weeks, we went to see the pulminologist (all clear), the epileptologist, and the developmental specialist. Also, she got another EEG. All indicators say the surgery is a go for next Thursday, Feb. 15. On Feb. 14, she’ll get another MRI with feducials (optic markers that will guide the surgery), plus last minute bloodwork and a consultation with the neurosurgeon.

Other than going to doctors, things have been pretty calm. Roxanne has more low seizure days than high lately, which is great for both of us. She had an unusual 4-day streak of low or no seizure days where Roxy really seemed to develop and interact well. That reminds me: she had her first session with the physical therapist yesterday. Excellent! Now I have some exercises (movements? routines?) I can do with her to help improve her muscle tone in her torso, where she’s weakest. Roxanne still has the ND tube for feeding, and miraculously, it’s the same one the doctors put in early in December. In other news, she sleeps through the night most of the time (at long last!), so I’m a far happier person than I was during the sleep deprivation era.

Folks have been asking how I’m coping with the idea of Roxanne’s surgery. On days where she has a lot of seizures, I know we’re doing the right thing, but I’m still nervous, dubious and anxious about handing my 6 month old over to have a portion of her brain removed. I guess that’s why I haven’t been blogging lately. But we’re doing OK, and things are better now that Dan is home for a while.

The doctors say that Roxanne will be in the hospital for 3-7 days after her surgery. During that time, I’ll post updates of her progress. Thanks again for sending your healing affirmations, good thoughts, and prayers.