I love the way my blog shows me search engine terms that have led to my blog (except in the case of the person that was googling “baby torture”. I guess that will teach me to make jokes about physical therapy). A lot of people are finding my blog searching for Casey Revman Runner’s World TSC. Interestingly, my blog seems to be the first to show up in the results…but I’m guessing all of you are looking for the article, which seems hard to find, so here is the link to the article that ran in December’s Runner’s World.
December’s Runners World p. 52
I have also been nominated for Blog of the Year 2012 by a fellow blogger and, in turn, will be making my own nominations shortly 🙂 Thanks, Sylvia!
A favor to ask of everyone: please click on the Top Mommy Blogs link to the right. You don’t have to do anything once you get there, unless you want to browse other mommy blogs, but those clicks get me a higher ranking, which gets more readers to come to my blog and helps spread the word about TSC. Due to a glitch with HTML, it turns out none of my cllicks counted for the last month and I dropped off the ranking list, so please help me get back up!
Connor has now had two swimming lessons, about 30 minutes in length. He generally spends the first 26 minutes looking like, what is wrong with these freaks and why are we doing this? He spends the last four starting to warm up to the idea, and then we get out. But he doesn’t fuss or complain, not even when we dunk him. Just looks at me like I’m a world class idiot.
I’m a Junior Bubble Blower!
He’s also about to start music therapy. He responded incredibly at our initial meeting with the music therapist, so I signed him up for a weekly group class with other kids, and he will also do a weekly private session with the therapist. And the best part?! Besides the fact that he responded so well to her? She is charging less for a private session than our specialist co-pay would be if I wrangled a way to get it covered.
I”m very excited that I’ve booked my flight to DC to be part of the Walk on the Hill to get more government funding for TSC research. We’ll be making phone calls to set up the meetings with senators and reps shortly. Connor is excited to get rid of me for a couple of days so he and Daddy can get a keg. We’re also in the process of planning our next study visit to Boston at the end of March. While we’re there, we’re planning to have him seen in the Boston TSC clinic. It’s not that we’re not happy with the care he gets here in Atlanta, but we’re already being flown up by the study, so it only makes sense to have as many eyes on him as possible. Happily, we are covered by United Healthcare. I’m feeling good about UH today. Sure, we’ve had our minor aggravations, but piddly stuff. Thank you, United Healthcare, for not putting me through this, and thank you, social media, for allowing this. I’ve only ever managed to use social media to get refunds on crappy products or questionable charges, so this is quite impressive. It’s just a shame that this is starting to become the norm of how people can get anything done. You can’t be nice anymore, and that sucks. Aetna deserves the bad press. (If you don’t have time to click those links, long story short: Aetna was behaving HORRIBLY toward another TSC mom, and putting her daughter’s life at risk).
Speaking of companies that suck, Accredo Pharmacy is at the top of my s#&* list. I’ve complained about them before, here and here, in case you don’t recall. I didn’t throw their name out there then. But I’m done, and would love nothing more than for a Google search of their name to lead to my blog, especially since I discovered in an online TSC discussion group, several other people fighting with this inept facility. We encountered yet ANOTHER problem filling our prescription of vigabatrin, Connor’s most important medication, a seizure medication. Seizure medications are the kind of medications you don’t just miss a dose of. It can be serious, but this pharmacy, ACCREDO PHARMACY, shows time and time again that they have no understanding of this. Or they just don’t care because it’s a specialty drug and they know we can’t just run to CVS instead.
So this time THEY called ME to set up his refill shipment. It seemed to go smoothly. I thought things were finally flowing. Since we had over a couple weeks left, it was scheduled to come about 10 days later. They really love to ship at the last possible second, but I’m tired of arguing with them, and since everything seemed to have been cleared up with them, I thought, well this still gives a few days of safety net. Unbeknownst to me, this was not just a refill. It required a new authorization from the doctor. Now, that is THEIR responsibility to handle, but I wish I’d known because I would have seen it all coming and facilitated the refill as a precaution, as I’m well aware of the fact that this pharmacy is barely functioning. The day the meds are supposed to arrive I get a call saying they never shipped because they never got a response from the doctor. Funny how they have this problem, but when I need to get his other stuff at CVS, I never do.
On the phone AGAIN with Accredo.
And nobody ever called to tell me there was a problem. Something I could have solved by contacting our doctor, which I now did in a panic because I know how slowly these idiots move, and I know a new prescription has a turnaround time of roughly six years, even though it’s 2013 and a tweet can circle the globe in 4 seconds. The neuro nurse contacts them, provides the prescription, and then proceeds to have them remove all the incorrect contact info from their database because this whole time THEY HAVE BEEN CALLING THE WRONG PRACTICE! And guess what?! I have already corrected the phone number with them. MONTHS AGO. At this point I’ve involved an employee at the pharmaceutical company that I was put in contact with regarding previous issues I’ve had with Accredo, telling her I’m freaking out because I don’t know if it’s coming and every time I call, I get a new rep who has no clue what’s going on. So she’s doing something, and then she tells me she has someone else looking into it as well, and I continue to call and tell my story over and over to every clueless rep that answers. It’s clear that none of them undertand that it MUST SHIP TODAY. It’s Friday. It MUST come Saturday because we fly to Boston Sunday and our last dose is Monday morning. Nobody cares. By the way, when I called the next day, they STILL had the wrong number for our doctor in the database. Somehow, miraculously, it ships Friday afternoon to be delivered the next day. I don’t know if it was my pharmaceutical contact or not, but I imagine it wasn’t MY powers of persuasion. But I can’t handle these monthly Accredo meltdown days anymore. So I took to the TSC discussion group to warn people away from this place. Options are limited, but if they can, run, run away! Two other people shared their nightmare stories with me about Accredo, how one actually has run out of meds, and the other can’t get her first shipment scheduled to save her life. So I privately passed the contact info I had of the pharmaceutical person, and can only hope if enough people complain, this place will get cut off.
Connor’s neurologist plans to attempt to wean him off the vigabatrin when he turns one. If the spasms are gone, it’s done. If they aren’t, we have to stay on it. Oh please let them be gone, first of all for Connor, but also, just a little bit for my sanity, too.
Having your own Accredo issues? Please read my followup on Accredo here.
We flew to Boston so Connor could take part in a TSC study through Boston Children’s Hospital and Harvard. It helps us by potentially identifying areas in which he might be showing delays so we can intervene, and in exchange we are helping the study identify early markers of how TSC might progress. Since there is such a wide variation in how TSC presents, from people leading competely normal lives to round the clock care and everything in between, the earlier doctors can identify who might go down certain paths, the better.
I was worried about flying with a baby. Ever since 9/11, I have had a decidedly contentious relationship with TSA. Apparently I resemble p. 33 of The Big Book of Terrorists. It’s gotten better since right after 9/11 when I was one of the randomly chosen few for the arbitrary secondary search at the gate (every. single. time), I guess because I so perfectly fulfilled the role of “white girl” in a politically correct collection of humans to pat down. So I’d be chilling with Asian Dad, Black Grandmother, Hispanic Mom, and various other people wearing t-shirts that said “Just Do It: Blow up the Plane.” TSA relaxed with me after a few years and mostly only chose to arbitrarily search my bag even though I had cleared security, finally prompting me to remove my bomb-shaped luggage tag and collection of Middle East flag patches meticulously sewn all over.
Who knew a baby would make it easier?! First, we got to bypass the security line in Atlanta. When we returned our Hertz rental car at Boston Logan, they drove us to the terminal instead of making us catch the bus. Then I got to bypass the full body scanner since I was holding him (I’ve successfully avoided these ever since implementation! Score! knock on wood). We got to board early. Rather than making us choose peanuts, pretzels, or cookies, the flight attendant gave us two of everything. And finally, getting to enjoy that intense look of fear in passengers’ eyes when they see you. Pure awesomeness.
It was Connor’s first flight, and generally, he’s not a fussy baby, so we weren’t too worried. Naturally, as soon as we sat down on the plane, he whined and shrieked, until we got him to sleep. From there it was smooth sailing. On the flight back, we had a standard rough Delta landing which he loved. As we bounced and jerked, he laughed and laughed.
We arrived Sunday night (oh no, I’m sorry. It was only 4:30, it just happened to look like night already) and went to pick up our rental car from Hertz. We were upgraded to a Hyundai Elantra. Don’t get me wrong, it’s a cute sporty little car, but the key word is still little. Were we getting a moped before? No complaints though. We had a great experience with them (see above about how they drive people with kids to the terminal). I’d detail our adventures of trying to navigate the big dig and poorly lit Boston roads with tiny street signs to the Holiday Inn, but I try to keep the four letter words to a minimum in the blog.
We finally found it though, only to discover they didn’t have our reservation. Apparently, the hotel made the reservation for the day they received the request from the study, not the dates we would be there. So we were a couple months late for our reservation. Fortunately they had plenty of rooms, with windows into the interior lobby, not to the outside. Deep breath. I will not freak out that I’m going to suffocate and die in here. The study ladies were unthrilled to hear that this occurred (seemingly not the first time) and we are being reimbursed for this as well. So we enjoyed a “not bad” hotel dinner, followed by some extremely questionable eggs benedict in the morning, and to the study we went.
What are these tiny pillows on a king bed?!!
Unfortunately Connor had one of his eye rolling episodes during breakfast which meant he was gonna be a little bit on the tired side. They started with the EEG net on his head, a very expensive and newer version that delightfully didn’t require the glue of the standard EEG. The computer tracked his eyes while a screen flashed pictures of shapes, me and a random woman.
Then he sat on my lap at a table and they watched how he interacted with certain toys. He was given particular tasks to complete with objects, but at that point he had more eye rolls and it was sleep time. We had to cut the cognitive test short and do it based on parent report. The final part was an examination by the neurologist, who noted his slightly low tone, but otherwise thought he looked good. She was impressed that despite his surgery on the right frontal lobe, he showed no weakness on either side, which can occur.
All this took place in just under 2.5 hours and we had several hours to fill before catching our flight home. We decided to tour the campuses of our backup schools, Harvard and MIT. As we both got into our first choices, Chris into Marquette, and myself into the University of Georgia, fortunately neither of us were forced to go to these second rate institutions. Harvard does have a beautiful campus, although that does little to negate their horrendous academic reputation.
This is a Harvard snowman. I rest my case.
We received the assessment results within a couple days. Areas of concern: visual reception (have to look into this more, I think it means he wasn’t paying much attention to the screen with flashing pics-we’re hoping a factor in this was that he was quite tired and not really wanting to keep his head up to look at the screen), expressive language (already looking into speech therapy, since he can certainly be noisy, but isn’t yet making consonant sounds), and gross motor (already getting PT). Not really major surprises. Receptive language was a slighter delay, meaning while he seems to recognize some words, he doesn’t consistently respond to them. I definitely notice that when he’s in a good mood, he’s pretty responsive. If he’s tired or disinterested, he’s pretty good at ignoring me. Interestingly, his fine motor skills were right on target, something I already thought to be the case.
His 12 month follow up looks like it will be the last week of March. We’re extending this trip into a little family vacay. I look forward to building my positive relationship further with TSA. If they stop feeling me up permanently, maybe we can even be friends…
I have been having a lot of vivid dreams lately. I’ve had a couple in which Connor started crawling or walking, so vivid, that when I woke I felt sorely disappointed that it wasn’t real. I know he will…I’m just ready to see it. Then there was the one in which we took him to a very questionable looking children’s salon, one that looked like a candidate for Tabatha’s Salon Takeover. He was preparing to get his first haircut, but then, in true dream fashion, Chris and I were suddenly in the car driving away. In dreamworld, it was acceptable to leave him to get his haircut. But I realized I had meant to stay and now I would miss it and get no pictures, so I started to cry. Chris turns to me and says, “Well, why didn’t you tell me you wanted to stay?” “I forgot!” I replied. “You’ll get over it,” he says.
I shared this dream with Chris the next day, and when I told him that I started to cry in the dream, he laughed and said, “You’ll get over it.”
Editor’s note: When Chris read this he said, Hey! This doesn’t paint me in a good light! So I want to clarify that my subconscious merely is incorporating the fact that we both have an obnoxious sense of humor. And if you don’t immediately get up and get me a glass of water when I ask for it, I will use my blog to make you look bad.
But the weirdest dream was the one in which I ate one of his toys. It made complete sense in the dream that I would. But as soon as I was done I was racked with immense guilt. You’re probably envisioning a small toy, like a rattle or block. No. It was this:
The foot is for size comparison. I ate…a piano. It was like a cartoon with big old bite marks in it. I don’t even want to know what a therapist would say all this means.
I was looking through my bedside drawer the other night where I stash books I haven’t had a chance to read. I came across a book I had buried months ago when Connor was in the NICU. It was a collection of stories about living with TSC, and part of an information pack given to newly diagnosed families. I was too freaked out to read it then, but this time I actually flipped it open and read a few. No anxiety attack, no heart racing, no dizziness. What a difference a few months make. I can even interact in online discussion groups now. It was a long process of enter and retreat for me.
I’m impressed I haven’t felt more blah with the end of the Christmas season. There was still a bit of the letdown of putting everything away and life going back to normal, but it still went fairly smoothly. It was a bit of glum feeling for a moment tonight though, when the last house on the block (the closest one we have to a Clark Griswold) threw in the towel on the outside lights.
But in a way, Christmas is now a permanent fixture in our house, as it spelled the end of our dining room. Connor officially now has too much stuff not to dedicate a space (besides his room) to him. We pushed the table against the wall, surrendering the space to him, as he looked on smirking, sipping his Similac and pretend smoking his teething ring . He gave us a smile that said, “you held on longer than I thought you would.” He thinks it’s “charming” when we pretend to be in charge.
Our new dining room. Dinner guests can fight over the jumperoo.In his new playhouse. His trump card in the battle of the dining room.
I had a blog once that was painfully blunt. It was my outlet for five years when I battled depression and anxiety. That battle actually went on for more like 10 years. Some friends stuck it out. Others found me too aggravating, and I was aggravating. But they can still go to hell. I’m good now and have been for several years. I was delightfully sarcastic and dark in that blog. Or at least I think I was, in my own little world. I didn’t tell family I had it. It’s long gone since the day a disgruntled employee at Journalspace intentionally sabotaged the server, destroying an entire online community. The one and only time I backed it up was two months prior to that fateful day. I wanted to print it once, but it was over 500 pages. Sometimes it’s hard for me to be completely open in this blog because I use it as a forum to raise awareness for Connor. This means family and family friends read it (although as I discovered tonight, my brother hasn’t been, so he can suck it. I pushed him on a cactus once as children and I’m not afraid to do it again bwa haha). As I get more comfortable, I might open up more on a personal level.
Which brings me to the fascinating world of Facebook. Feel free to unfriend me if my unending lobbying about TSC annoys you. Of course, it’s not like those people would be reading this. I have been blown away by the thoughtful, kind words from people that I haven’t seen in years, didn’t know well even then, and sometimes never even met. Especially when some of the people I spent significant amounts of time with at some point in my life have never cared to say a word to me about Connor.
2. The TSC community needs to go balls to the wall.
I’m not in the greatest mood because the last couple of days I’ve been lobbying like crazy to get votes on behalf of the Australian Tuberous Sclerosis Society. They started out well in the lead. Earlier today another group had a 30 vote lead. Now it’s over 100. I’m about sick of the lack of awareness and touting of various opportunities to get funding for TSC. Once again we are faced with a vote where we aren’t even at 2,000 flipping votes. More like 1,600. Just like the Chase Bank competition a few months ago. Yet I’m part of two online communities, one with over 2,000 TSC people and another with over 5,000. Something isn’t clicking here. I’m angry.
3. Life isn’t fair.
Yesterday, one of the children I know with TSC was rushed to the hospital in the midst of a status seizure. If you don’t know, that is a seizure that won’t stop without medical intervention. From what I hear, it can involve being pumped with so much medication to stop it that they have to be in a hospital because they would otherwise die from an overdose. Connor has never had one, but once again, on the list of increased possibilities with TSC, that is one of them. When I was teaching,I would, from time to time, have to be trained on a medication that is inserted into the rectum to stop a seizure. I never had a student have a seizure, but I now know that drug is Diastat and that is what it is for. I used to cringe at the idea, never knowing epilepsy would be a factor in my life. Wouldn’t phase me now, though we don’t have any and I’ve never had to use it. Funny thing is that I think that the last 9 months of my life would make me a most fantastic and understanding teacher. Too bad by the time I left, teaching was 10 percent of the job. Garbage paperwork and filibuster meetings were the other 90.
But I feel bitter because this child has been through enough. He’s never been seizure free for a moment. He’s not even four and already lost a kidney. He’s been through enough. Hey, God. Feel free to cut him a break. Feel free to cut a whole lot of babies a break.
Forget TSC. Do you know how many kids out there have a health problem? You don’t. Not unless yours does. Until then, you don’t know. Forget TSC. What about all the other stuff? Once your eyes are open to one, it’s everywhere. Can you believe there is a little girl out there that was not only born with TSC, but is now battling an unrelated childhood cancer? Really? One rare disease wasn’t enough? Did you know cardiac birth defects are as common as 1 in 100? Can you believe that the physical therapist assigned to Connor has a 3-year-old granddaughter battling cancer as we speak?
People are praying everywhere. But I’ve learned something. Prayer makes the person praying feel better. Don’t get me wrong. I love that people are praying for Connor. He’s had prayers all over the States, Colombia, India and more. Don’t stop. But it gives me this mixed feeling of bitterness and relief. Sure, I want to believe it will make a difference. But I don’t really believe it does. Some prayers get answered. Some don’t. I don’t know that I prefer to believe God is answering some and not others. I’d actually rather believe things are just happening down here. Otherwise, why do some deserve to get answers and others don’t? I’m sick of stupid prayers, too. Do I have the right to call other people’s prayers stupid? Probably not, but if children are sick and/or dying and God is helping you win a stupid ass football game or experience great weather for your fishing trip, I’m gonna be pissed. Is God the reason your wedding went beautifully? No, you got lucky. And if you think God is the reason your centerpieces didn’t wilt and drunk Uncle Jack didn’t embarrass you, you’re a moron. Good luck with the rest of your life thinking God is going to fix all your piddly marriage problems.
I don’t know how people give it all up to God and just believe it is all for a reason. I want there to be something after we die. That’s the only reason I don’t blow it off all together. But while we’re living…what is there? I don’t know.
Please click on the right of my blog to go to the Mixed Up Mommy facebook page where there is a link to help get funding for TSC research in Australia. All you have to do is click on the logo and “like” it. The group with the most votes will receive funds from Tupperware. Another group just pulled ahead but it’s close!
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:
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.
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:
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!
Shots of Connor’s first Christmas in the next blog entry!
What a lovely evening. I am lying. There is a possibility we will be discharged tomorrow instead of Friday. If there is a God, he will get me out of this place. Oh, Connor’s fine. But I’m going mental. I can actually handle staying here, no problem. It’s the not having control thing that is making me completely insane. Tonight the meds came an hour and 15 minutes past his med time. By then I’d had to give in and feed him although feeding him is essential to getting the meds into him, and we’d missed the window to put him to sleep. So my baby that goes down no problem 98 percent of the time, screamed for an hour, and now continues to stir every so often and wake up to cry enough so that I have to pat him back to sleep. Just when I thought we established a firm schedule of the meds being 40 minutes late. Look, if you won’t allow me to do it, then you gotta bring them on time. And if you’re understaffed and it can’t be done, well, then you’re gonna have to let me freakin’ do it. I’ll sign a damn waiver.
So, the big news! What do we know so far? Our neurologist stopped by to talk about what he’s seen so far on the EEG. Connor has had a few episodes now which could clearly be seen on the video and the neurologist has gone over the activity that coincides with those events…and the conclusion is: Drum roll please!!!! (you better be pounding your desk at home)
Nothing. We still don’t know. Nothing is there. No seizure activity is appearing on the EEG. Everything looks good in the abnormal way the EEGs of people with TSC can look good (meaning it is normal for people with TSC to have an abnormal EEG due to the tubers, even if they are having no seizures).
WTF, baby. WTF.
Since all the activity is with the eyes he added two more electrodes right next to them to see if that changes anything. So we shall see. I suspect we will check out knowing no more than when we came in. However, we may be increasing the keppra as his episodes got shorter last time we did. And possibly going down on the klonopin (clonazepam) as that never seemed to do much.
So, I’m glad the EEG looks good, but ummm, apparently we need to work on Connor’s attitude because he rolls his eyes at me at least 50 times a day. Just kidding. I don’t know what to think.
I just scanned over what I’ve written so far and it reminds me of why I hate baby discussion forums. Everyone talks in acronyms and I got sick of having to google everything they said.
The day was otherwise exciting as the kids got a visit from the seizure dog today. Connor loves dogs. I’m bummed I wasn’t able to snap a pic of the big smiles he had when the dog came in. It makes me really want to get him one, but Chris and I both agreed they were too much work. So we had a baby instead.
Connor also managed to massacre the electrodes on his head today. Two factors contributed to this. One, he inherited this crazy gene from his father that makes him sweat even when it’s 20 degrees out. Two, he likes to yank on things, especially wires and hair. Once he had created a sweat lodge inside his gauze turban, it was all over. It started to unravel around 4. Previously someone had come in right away if something came loose, but this time no. I casually mentioned it to a nurse, but I guess I didn’t properly express the imminent danger of these tiny little hands. Later, Aunt Donna came to watch while we went to dinner. It was straight raggedy by then. And when we returned, I guess one of the techs had shut it off from their remote monitoring station (perhaps located in the Lost hatch?).
Just then the nurse arrived, so I addressed the elephant in the room.
“So we’re here for an EEG, and jeepers this is awkward, but there is no EEG. Does this mean I can go home and hit the Jack Daniels?”
I will say, someone was there shortly after to redo it. Shift change had just occurred. When I replied 4 o’clock to her inquiry about when this started coming off, her expression was, well, I will call it “interesting.”
Connor would rather go get a frappucino.Yup, data is looking a little questionable.I look away for 2 minutes and he’s draped himself in wires and other medical material.EEG part deux
…because people are driving me insane. In order to maintain my positive thinking, I must vent somewhere, so even though I’m about to do some more complaining, I’m just emptying the irritation can so I don’t kill anyone who looks at me funny tomorrow.
So first, the good thing. Since I’m reporting to you live at Connor’s hospital bedside, I can tell you he’s had two episodes while hooked up to the EEG. Finally. They weren’t able to thwart us this time. He’s having more clusters a day, though the clusters tend to be shorter than before. Today I saw five for the first time since this eye rolling started, although the last one, may have only been a couple quick rolls.
All hooked up with nowhere to go.
Now here’s the part where I unload. What can I say? I’m tired. This EEG business has been going on since 6 am (and I don’t count the ordeal of getting this appointment-see previous posts). I had to wake up to call the transfer center to see if there was a room for him. There wasn’t. But that was okay because I knew it was a possibility we would be on standby at first waiting for one. At least they let us wait at home. So I have to call back at 8. Then I have to call back at 10. Then they say call back at 12. Okay. Deep breath. Sick kids get precedent and apparently there’s a massive influx of RSV cases. I’m not a monster. I do understand that. Another deep breath. Then YAY! They call ME back at 10:30 and say to be here by 12 because they will get him hooked up in the lab and hopefully a room will be ready by then. So we come to the hospital. Where we wait. And wait. And wait until two hours later he gets his electrodes. But there’s still no room, so the test isn’t going yet. So we wait. And nap. And wait. And we finally get a room at almost 5 pm. They almost broke me waiting for the electrodes. Oh yes, it was close. But I maintained.
Killing time, waiting for the room.Shut up, Mommy!That hurts for realsies.
That was nothing. Here was what really got my heart thumping. We went over all his meds earlier in the day and they had been submitted to the pharmacy. It was made very clear that all meds during his stay would come from the hospital pharmacy and must be administered by the nurse even though we do it at home every day. I will cut them a break on that given the litigious nature of this society. But, one of Connor’s meds is not easy to obtain. I was highly doubtful they’d even have it in stock considering I heard they recently ran out of a major antibiotic. But hey, they have all their information hours before his med time, right?
His med time in the evenings is at 8. At 8:25 I was about to call and see what was up because he was getting sleepy and cranky, when the nurse comes in. We administer Klonipin. Then Keppra. Then…taking vitals? “Are you giving him his vigabatrin?” I ask. “Oh the pharmacy wanted me to ask you about that. They wondered if you had it here because they don’t have any.”
For a moment I flashed back to the night a few years ago that I was at my favorite bar, Fado (before it moved and stopped being awesome), having too much to drink and breaking up with a guy via text (don’t judge me for the text. I don’t usually condone that. There’s more to the story). I was, shall I say, not in a good mood, and fueled by alcohol. Fado had recently hired a new valet, and he, how do I say this politely, sucked a fat one. Drunk girl was ready to leave, he had my keys, and was nowhere in sight. (Disclaimer: I am not the one who drove my car home). Thirty minutes later, after inquiring to his whereabouts with several bartenders, he wanders out of the kitchen where he was hanging out. I said, “There you are! I need my keys!” And he said…are you ready for this? He said, “Relax.”
I. Lost. My. Sh#%. Lost it big time. It is the only time in my life I have ever gone off on someone in the service industry. And as I did it, I could see my friends Lili and Angel desperately looking for an exit so they could disassociate from me. I went batsh#% crazy. But I don’t feel bad because I would be vindicated another evening when he blocked a bunch of cars in and failed to take the keys from the owners blocking them.
But Connor cannot duck away from me. My actions can affect him and his future treatment, whereas I knew our favorite bartender Kevin would never fail Angel and Lili, so I calmly replied, “Yes. I did wonder if you would have that drug.” What I did not scream was, “ARE YOU EFFING KIDDING ME? THE PHARMACY JUST FIGURED THIS OUT? WHAT IF I DIDN’T HAVE IT? IT’S ONLY HIS MOST IMPORTANT MEDICATION!”
I’m growing.
And when I was asked to turn it over to have the pharmacy verify it, I stashed a bunch out of sight. Navigating the medical world.
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
Mixed Up Mommy 