Tag Archives: Atlanta

You want answers? I WANT THE TRUTH! Well, good luck with that.

December has been a tough month for blogging. I feel like I’ve been going, going, going. That’s even more than I usually feel like I’m going, going, going with a 9-month-old. It started with stressing over trying to get that confounded EEG appointment, then going down to Florida to see Chris’s parents, coming home and checking into the hospital the next day for the EEG, getting discharged in time to start all the family festivities with those that came to town, then Christmas. I was so exhausted I had to renege on plans to hang with some friends at a bar downtown. This after weeks of thinking, “man, I want to go out.” Not that I don’t go out, but I wanted to go out more like I went out pre-baby.

It didn’t help that we went from warm, sunny Florida where it was still summer, and we floated around in the backyard pool with beers in our hand, back to chilly Atlanta, where we immediately had to check in for the stay from hell at Scottish Rite.

Pics from Florida:

A snowman

A pool

A pier

A kiss

A flamingo Santa

A elf

A duck

A crane

A chris and me

So we got all nice and relaxed in time to check in for Connor’s EEG where we could promptly become stressed and agitated. We had no issues with our neurologist. He kept us informed and even let us out a day early as we’d caught several “episodes.” This is our second less than satisfactory in-patient experience. First time was after his brain surgery. The surgery part went great. We love our surgeon and we had a good experience with the surgery department. There were a few issues once we moved to his room though, the primary anger-inducing one being that the day after surgery when he started swelling, he was clearly in pain. His heart monitor kept going off because of it, but nobody ever came to check on him (or for any other alarm for that matter). Don’t get me wrong. I totally understand that every alarm is not an emergency, but as parents, when things go off repeatedly for an extended period of time, we might benefit from a little explanation of what warrants concern. Not to mention, it’s already stressful and then you’re sitting in a room with all this machinery beeping at you obnoxiously. It got to the point where in the middle of the night I just started silencing them myself (after it had been clearly established which ones were clearly unworthy of response). At any rate, we finally asked when his next round of pain meds would be. I stupidly assumed (as I am new to the medical world-my first hospital stay being Connor’s birth) that he was getting them because his skull had been drilled into and his brain resected. “Would you like him to receive pain meds?” was the response. “Ummm…yes. He’s in pain and crying.” The nurse responded, “Yes. I saw his heart rate kept going up on the monitor out there.”

Well, alrighty then. But this was before I read an article that advised to never have surgery on Fridays because weekends aren’t exactly the best staffed, so I chalked a lot of it up to that. Also, before I continue, I want to be clear that it’s not my intention to bash nurses. We’ve had great ones that were very proactive in pushing doctors that were taking their sweet time taking care of business, especially in the NICU, but it’s like any profession. Some are great, some are good, some suck. Because then there was the evening Aunt Donna watched him while we went to dinner and he pulled his IV out, spurting blood everywhere. The boy loves to yank his wires. She was left applying pressure to the bleeding spot until the nurse could return with a bandaid. Good thing it finally quit bleeding because nobody ever came back. We also couldn’t get his med schedule reestablished while we were there becaue every time shift changed, nobody had passed on that he takes them at 8 and 8, so they were coming at all crazy, inconsistent times.

So this time we were there mid-week. I do think he got more attention this time, which was funny because it was just a testing situation. But the meds were consistently late messing up his sleep schedule, sometimes more than an hour. And the most frustrating part is that I don’t want to yell at the wrong person. I don’t want to go off on the nurse, because if they are understaffed, that is not her fault. But with a lot of the stuff that doesn’t go smoothly, you just don’t know where the breakdown happened. I’m particularly uncomfortable in this area because I taught for seven years and I know what it is to have parents let you have it over things you have no control over.

But even midweek, we weren’t issue free. There was the EEG removal and shutdown I mentioned in my last entry. Then came the big one. The second night we were there I noticed Connor’s eye was red and irritated. I thought perhaps that in his rubbing and messing with his electrodes he may have gotten some glue in his eye, so I asked the nurse if there was something that could be done to soothe it. She was uncertain whether it was irritation or an infection so she wanted to check in with a doctor first. Thirteen hours later he finally got a saline flush. (And I had brought up the eye problem twice more). By then it had progressed to goopy, not opening, and him screaming like a bat out of hell when we pried it open. Sixteen hours later after more followups from me, a pediatrician checked him out. He’s still screaming and refusing to open his eyes. Seventeen hours later he got ointment and a swab to test for pinkeye. The swab would later come back negative, affirming that perhaps if he hadn’t had to wait 13 hours for an okay on a simple saline flush, that maybe he didn’t have to suffer the next few days, even after he came home, unable to see us or his toys. Here I thought being in a hospital was the optimal place to be if something like this happened. Who knew we’d have been better off at home and taking him for an emergency pediatrician appointment? Sixteen hours as a patient in a hospital. What happens if you contract MRSA? Does a limb have to fall off?

Headed home after his two-day EEG. Too bad he can't open his eyes to see his awesome hair.
Headed home after his two-day EEG. Too bad he can’t open his eyes to see his awesome hair.

I’ll end my diatribe there. But I will say that I’m the calm(er) one, always telling Chris not to burn bridges. God help any hospital that houses me should I ever lapse into a coma.

There was one thing that led me to feel grateful after this stressful stay. After we were home, a friend posted a link on Facebook  about the passing of a friend’s premie baby. I didn’t know the parents, but as I was downstairs bitching about Connor’s eye, there were parents above us in a NICU I know all too well losing their child after 77 days of life. Things can always be worse. I can’t even imagine.

As I mentioned, Connor’s eye-rolling “episodes” as I now call them did not show up on EEG as seizure activity. After another day of comparing video of his eye-rolling with simultaneous EEG activity, one correlation our neuro could find was that when Connor is awake, electrical activity from his left occipital lobe tuber spreads over the left side of the brain. When he’s sleeping it spreads all over the brain. However, when he has the eye-rolling episodes, the activity resembles what it does when he’s sleeping even though he’s awake. But it doesn’t build up into a seizure. It’s just a little quick burst of activity from the tuber (which if I understand correctly isn’t uncommon in TSC) that dies away before it builds into anything. So, for the neuro, it still doesn’t explain why his eyes move like that when he has these clusters. He is still looking into it because he’s never seen this before. I’m glad now that he didn’t okay the ambulatory EEG because the test would have been a wash without video.

Anyway, December has been so crazy I never got to do my post about decorating for Christmas, which I love. So here are some shots of our house:

B outside

B Santa

B soldiers

B train B tree

B room

And my new pride and joy: a Lego Christmas village! Put together, of course, by Chris. I don’t have the patience. Chris’s initial plan was to assemble and disassemble on an annual basis since he enjoys Legos. Several hours of construction later, that plan was out the window. I’ll explore the fake snow option next year, but after hours of work, Chris was opposed to anything that required the manhandling and moving of the parts. Very, very opposed. So Merry Christmas. I didn’t break the village!

village 3

village 7

village 6

village 5

village 4

village 2

village 1

Shots of Connor’s first Christmas in the next blog entry!

I do it when I feel like it, lady!

Okay…yesterday’s post was a bit of a downer, so I thought I’d share some good stuff. First of all, thank you to everyone who reached out with stories to make me feel better about Connor. He decided to cheer us up the next day by being much more engaged with playing while sitting. I think a few things just came together in the last week that caused us to bum that night. One was that his physical therapist expressed concern that he’s not as engaged with his toys in a sitting position. Honestly, I’m not sure what to think about that. If he’s lying down or in his bouncy chair he’ll bang the suspended toys around for hours, so it’s not like he doesn’t play. Once a toy is in his hand while sitting he can develop a death grip that likely matches Charlton Heston’s around his gun collection. But he tends to need a little prodding to reach out and grab his toys when sitting up in a chair. That day we were upset, he was particularly disinterested in doing so. The next day he was far more cooperative.

Another piece to the puzzle was that Connor went in for a followup hearing test. His hearing is perfectly fine, but when they did the part that tests his cognitive response to sound, meaning checking to see if he would turn and seek the sources, he didn’t do so hot. He didn’t seem particularly interested in seeking out where the noises were originating from. The thing is, Connor never does as well with this stuff with people he doesn’t know well. I’m not saying he isn’t somewhat behind, but I think he does far better with us than in a testing situation with total strangers. I couldn’t help but notice that afternoon, when he tagged along with me to the salon, that his head was turning all the time. He was between two stations, and the blowdryer would come on to the right–TURN. My stylist starts to talk to his left–TURN.

Then this morning was very exciting. Connor has never showed a whole heck of a lot of interest in rolling over. This was of slightly less concern to me because I’ve had many people with chunky babies tell me their kids didn’t care to do so either. He has previously rolled over from front to back before, but him doing so required that his arms happen to be in an awkward position that lent to him doing it. He wasn’t repositioning his arms to make it happen. If they weren’t already where they need to be, he didn’t bother. This morning, when Chris went to get him out of the crib, he decided to put Connor on his stomach. Connor reached out with an arm bent at a 90 degree angle and pushed himself back over. Then he did it three more times! This is so exciting! He was truly making the effort to find a position to turn himself without waiting for us to position his arms for him.

So moods are elevated in the house again.

But this wouldn’t be my blog if I didn’t complain about something, so…that EEG paperwork? Still don’t have it. Today is day #4.

I’m very excited about a trip I’ll be making in February to Washington D.C. I’ll be tagging along with Wendi Scheck and some other ladies of the North Georgia TS Alliance for the annual March on Capitol Hill. We will be joining the headquarters of the TS Alliance, as well as people from all over the country to meet with senators and representatives and advocate for federal funding for TSC research. And mark your calendars, Atlanta peepz. The 2013 Step Forward for the Cure is taking place on Saturday May 18. We had a huge team last year, and everyone is welcome back again, as well as anyone new who would like to join us. There is no minimum to raise and I will post when the online sign up is ready. We raised over $6,000 last year!

For my readers who aren’t local, but are interested in taking part in a walk, here are the other walks (and other events) that have been scheduled thus far:

Jan. 26- Singing for a Cure at Paddy Whacks Pub, Philadelphia, PA

April 7-Comedy for a Cure at Lure, Hollywood, CA

April 27- Mountain Brook, AL Walk

April 27-Scottsdale, AZ Walk

May 4-Houston, TX Walk

May 18-Chicago, IL Walk

May 18-Atlanta, Ga Walk

May 18-Long Beach, CA Walk

June 1-Noblesville, IN Walk

June 22-Washington DC Walk

Oct. 5-Des Moines, IA Walk

Orphan Drug Act

http://www.fda.gov/RegulatoryInformation/Legislation/FederalFoodDrugandCosmeticActFDCAct/SignificantAmendmentstotheFDCAct/OrphanDrugAct/default.htm

Changing leaves and sharp teeth

The second tooth is getting ready to make its appearance with a much bigger production than the first. So far I don’t care for this second tooth. It has an attitude problem so far as I can tell. The first one really just reduced his appetite (which wasn’t actually a bad thing), but this one is causing some very uncharacteristic fussing. All this, and I know they won’t even bother to stick around. These teeth come along, make us crazy, and just disappear in a few years as part of some sort of pyramid scheme with the Tooth Fairy.

We took advantage of the awesome fall weekend and my parental units as babysitters on Saturday and went to the Cabbagetown Chomp & Stomp. Some might question if it’s worth fighting the crowd to get tiny little cups of chili. The answer is yes. The joy I get from stuffing myself at chili cookoffs is somewhat sick. Perhaps because I think the small portions don’t count, even 987 small portions.

I’ve become really entranced with photographing graffiti. Graffiti near Cabbagetown.
That festival is around here somewhere. Just keep walking.
At the Chomp & Stomp.

Last night was the first night alone without Chris since Connor was born. He had to fly up to Albany to do a presentation-on his birthday, much to his delight. I let Connor sleep in the bed with me for a night that saw his best night of sleep possibly ever. He sleeps pretty well anyway, but I don’t think he made a sound or move until 7 am. Every time I woke up I had to make sure he was breathing it was so unnerving. He usually spends some portion of the night talking to himself or kicking his mattress like he’s Jason Statham.

Jason Statham

I guess he was worn out from our long day out Sunday walking the Atlanta Beltline and stopping to grab some food and drinks on the way with friends. But how to spend the evening without Daddy? Chinese delivered to the door and Walking Dead in the dark. Okay that was for me. He was sleeping. I suspect Walking Dead isn’t good for a baby’s development anyway.

Yup, more Atlanta graffiti. Near Old 4th Ward.
From a friend’s place on the beltline.
Arianna entertains Connor after the walk.
Connor seems to have outgrown his older woman, Isabella.

I mentioned a few entries ago that we had gone two days without seeing any eyerolling. We actually went three, almost four, but about an hour before bedtime on the fourth day we fell back into the 1-2 a day routine. So that was a bummer, but hopefully means we’ll see less frequency soon.

It looks like Connor will also have the opportunity to participate in a TSC study in Boston. We got connected through a friend who has a son enrolled and I e-mailed with the genetic counselor over the weekend. We are supposed to talk via phone tomorrow to iron out the details. On one hand I’m excited to have experts that will be keeping an eye on him at another major TSC clinic, and giving us an opportunity to get up to Boston for a change of scenery. Any issues that (hopefully don’t) arise, I will have more brains to pick and connections if other opportunities come about. On the other hand, the purpose of the study is to look at the issues that come about as a result of TSC, particularly autism. They are trying to figure out markers of which kids go on to develop it and which ones don’t. The fact that my child qualifies for this study because he has higher odds of developing autism than the general population terrifies me. Autism terrified me before I even got pregnant, even though I have worked with some kids I really loved that had it. One of my favorite students of all time was diagnosed with Asperger’s, but I still can’t imagine it in my life at home. The things that hang over you because of this disease just absolutely suck. I try to focus on the many amazing people who are living with TSC successfully and taking incredible steps to further research and awareness. Apparently the December issue of Runner’s World is going to feature a teenage runner with TSC. And whatever comes, we’ll deal with it.

Connor’s ready for Halloween!

My next post was supposed to be about what TSC is, but yesterday was my fourth 29th birthday and today we were out enjoying the pretty fall day. So, in other words, not a weekend conducive to serious writing. But Connor’s getting pretty pumped about Halloween, and insisted on wearing one of his Halloween themed shirts today. In keeping with the theme of his shirt, we went to the Sunday in the Park Festival at Atlanta’s Historic Oakland Cemetery. He had a great time. I can always tell when he’s having fun because he closes his eyes and goes to sleep to show it. I’ve also finally gotten on board with Instagram so I’m about to take annoying to a whole new level.