Tag Archives: hospital

Well, I don’t like talking on the phone either, but IT’S YOUR JOB.

You might be wondering if we got Connor’s 3-day EEG scheduled. The answer would be no. Because, you see, anytime you schedule stuff hospital related, it doesn’t work like a doctor’s office where you get transferred to a person who schedules you on the spot. No. You leave voicemails for people who are supposed to call you back and don’t. They never do. And I’m getting really, really sick of it. The neurologist sent the order in yesterday morning, and the hospital is supposed to call me. By the end of business that day, I was quite antsy so I tracked down the department number on their website and got connected to the appropriate person. I got her voicemail (story of my life) which stated she was out of the office that day, but also explicitly stated that all messages left that day would be returned the next. Well, it’s 6 p.m. the “next” day and nothing. So I will be calling again first thing in the morning, at which time I expect to address a voicemail again, then spend the rest of the day seething. It’s no little thing trying to squeeze in three days in the hospital at the holidays! I’m stressing over two things. First, what if they don’t even have any openings for a ludicrous amount of time, like until next year? And then, what if the opening they do have screws up our plans this month? Not to mention it always takes forever to get the results, so the sooner the test is done, the sooner we can start the next phase of waiting. Waiting. Waiting. Waiting.

To top it off, I realized today that I have hung up on countless phone calls from the pharmacy that provides Connor’s Sabril. I’ve complained here before about my issues with them, so you might wonder why I would be hanging up on them repeatedly. Well, dear reader, this is why. When I call them I use an 800 number. When they call me it’s a 901 area code, Memphis number. But I only recently made this connection because every time I have answered the phone, nobody was there. It begins to ring on their end to connect me to someone, and then hold music begins to play. There is NO identifying information, even a recording, to inform you who is calling. Surprise! Like any normal person, I assumed this was some sort of telemarketing robo call. So I always hung up. Until I didn’t answer. Today I stayed on and was on hold for several minutes before someone came on identifying who it was. Great business model. Really.

I suppose I should bring something lighter in to close. I’ve figured out Connor’s favorite food finally. Of all things, it’s a combination of prunes and apples. PRUNES and apples. And you know what. It actually smells and tastes pretty good. Who knew? That might become his only solid if he keeps swinging his head back and forth to avoid the spoon like he does with some of the other pantry items.

With what these hospitals charge, there should be a swim up bar.

Arrrrgh! NONONONONONONO! So we requested an ambulatory (take home) 24-hour EEG from our neurologist so we could figure out what these eye rolling incidents are since they don’t seem to want to stop and they manage to dodge those office hours EEGs, but he feels given Connor’s age, that a 3-day video EEG would be better. So back to Scottish Rite we go. Ahhhhhh. Shoot me. Shoot me. Shoot me. An EEG at home by the light of the Christmas tree doesn’t seem so bad. Three days in a hospital? No. More. Hospital. I’m taking liquor and I dare the nurses to try and stop me. Please, please, don’t let them call and tell me they only have dates during the time we are supposed to be in Florida, or I’m going down there anyway and feeding myself to the 8-foot alligator that likes to sun itself outside my in-laws’ lanai.

In keeping with the theme of the day, my morning went like this. Pack up 800 pound 22 pound baby and head out for 8:30 doctor’s appointment. Mom and baby are right on time, ten minutes early actually, as we triumphantly stride up to the desk, only to be told I’m not on the schedule. Oh that’s right. The dermatologist is at 2:10. I should be checking in for my physical at my general practitioner right now. Somehow, depsite the fact that I’m starving due to “no food after midnight” I still managed to confuse the appointments. Fortunately, my doctors are only 5 minutes apart on the same road. Well, fortunate if you’re not me, frazzled and with directional dyslexia. Nonetheless, I made it but a few minutes late so I could have needles jabbed in my arm. Baby guilt once again made me get the flu shot, the second of my lifetime. I got one last year so I wouldn’t break the fetus. I got one this year so I wouldn’t break the baby. Hey, Hubby, she says you have to get one, too! Haha! I should start snotting and feeling like crap shortly. The best part is that I get to go back this afternoon to face the ladies that saw me make an ass of myself this morning.

My husband and I recently got hooked on Scrabble by my parents. We played at the previously blogged about cabin with no cable where family bonding and quality time was forced upon us. Chris purchased Scrabble at Target and we also downloaded a Scrabble app on the iPad that let’s you play an opponent or the computer. On Sunday, Chris traveled to Pittsburgh for business where he spent some time honing his skills against the computer because it’s not enough that I can’t do math. He must also destroy me in Scrabble when words are all I have. Would you believe the computer played the word “tuber”? No, really. Freakin’ “tuber”. What are the odds of that? Perhaps the same as having TSC?

Deep breath. Okay. Positive thinking. The hospital will call shortly. They will have lots of availability. They will get us in quickly. It will not interfere with our trip like the last EEG, when we had to reschedule our vacation. I believe in Santa. I should probably get to eating now…I just tried to bite the cat.

Physical therapy and brain surgery

Since Connor was diagnosed at birth as having a seizure disorder, he automatically qualified for the State of Georgia program Babies Can’t Wait. This program is great because it provides physical therapy in your home at a Medicare rate. There is a common misconception in the hospitals that it is free. It’s not, but it is typically covered by insurance. I’m guessing that misconception exists because most people’s insurance covers it. Since they charge the far more reasonable Medicare rates, I would think most insurance companies don’t make an issue of it. If we went for private therapy, we’d have to pay a co-pay, drive him there, and they would charge several hundred dollars an hour. We haven’t had to pay anything out of pocket. And if for some reason, insurance doesn’t cover it, they charge you a fraction of the Medicare rate based on your income.

ImagePhysical therapy session

Seizures can impede development because you can’t take in input during one, plus they make you sleepy, so this adds up to less alert time to learn. Connor also has somewhat low muscle tone due to his neurological condition so it takes him a little longer to master a new physical activity than the average baby. (His pediatrician says his tone has improved vastly since she first saw him and it’s not expected to have a major effect on him when he’s older). At his initial assessment, which was shortly after he turned two months, he was placed in the 0-1 month category due to head lag. This means that when pulled to a sitting position from lying down, his head fell back rather than staying even with the body. I already knew he wasn’t lifting his head on par with other babies his age, so I was very nervous. He also spent the first five weeks of life in a hospital bed which didn’t help. So the first goal we tackled in therapy were exercises that would help him strengthen neck and back muscles that would help him hold his head up. He owned a pilates ball already and I had never even tried pilates.

Besides the head, the biggest difference I noticed was how wobbly he was when holding him to my side. He didn’t hold himself as erectly as other babies, so we also worked on strengthening his core. I was pretty unnerved this whole time though. Even though nobody said this would be his case, I had come across situations in which people had such low muscle tone that they were in wheelchairs or had exceptional difficulty with physical activity.

Fortunately, we went forward with brain surgery on July 27. It was performed at Scottish Rite by Dr. Joshua Chern. Oh, we love Dr. Chern. I did not expect a neurosurgeon to have a bedside manner, but he had really blown us away when we met him in the NICU in April. Very approachable and interested in making sure we understood what would be done, as well as the risks. When he tried to show us the MRI, he was unable to retrieve it in the computer system, but instead of just giving us a quick run through so he could go on with his day, he said he’d be back in an hour because he wanted us to see exactly what needed to be done.

ImageBefore going off to surgery

ImageSurgeon marking side of head for operation

He was back in about 40 minutes, and not only had he retrieved the MRI, but during that time he had spoken with Connor’s neurologist, as well as called a colleague for consult in another part of the country. Considering I feel like I have to call various medical offices eight times any time I need something medically related done, this kind of proactive go-getting was awesome. The tuber in the right frontal lobe was plain as day and according to the EEG, responsible for 80-90 percent of the seizures. And perhaps removing it would help lessen the few that were coming from the rear left occiptal lobe. It wasn’t too deep and he was confident it wouldn’t have any long term effects on him. It’s location was in a not very vital area, it was on the surface, plus at this age the brain can compensate by using other parts of the brain instead.

A little after his four month birthday we checked in for surgery at 6 am on a Friday morning. He went back at 8 am for another MRI in the operating room and the surgery was underway by 10. My parents and Chris’s sister came to the hospital for support and as we sat at the lobby Starbucks it became apparent that Chris wasn’t talking. His nervousness was palpable. I can’t really explain why I was as calm as I was (other than that I had started back on my anxiety pills a few weeks prior :). I was the mess during the NICU and Chris kept it together. Now the roles were reversed. Although his version of being a mess is much more pleasant than mine. I was just looking forward to having some sort of resolution finally. Although I will say the backpack full of thank you notes to be written and magazines to be read didn’t get touched. I wasn’t THAT good, despite hourly calls from the OR to let us know everything was going fine.

ImageBeing wheeled out of surgery

ImageThe day after surgery

Dr. Chern came to speak with us shortly after one o’clock when they finished. Everything had gone smoothly and the plan was to keep him in ICU that night and on the seizure floor until Monday. And then Connor became a rock star.

If you couldn’t see it, you wouldn’t know he’d had brain surgery. I’m a bigger baby over a headache. Surgery? I’d probably be ringing a bell and demanding to be waited on for six months. The only time he fussed was the next day when the swelling started and you could see his face getting tight. Once we told the nurse to give him the meds regularly, he was fine (side note: we actually had to tell them to give pain meds to him. We assumed that would be automatic after drilling into his head, but apparently not). Even then, all he had was tylenol and motrin. Man, even I got percocet automatically for pushing him out.

ImageMy parents with Connor after surgery

So I spent the weekend sleeping in his room, further mastering my craft of reattaching leads to his chest that would come loose and wake me up every couple hours with their incessant beeping. I relearned what the various alarms meant and which ones I could silence myself as they received no response from anyone on duty. I also enjoyed pretending to be asleep during shift change when the two nurses would peek in and talk about how cute my baby is. And finally, on Monday he went home. We haven’t seen another complex partial since, and his motor skills picked up immediately. His head was up, his core was steadier, he began to laugh more and an already awesome personality became even more incredible. He’s currently six months, getting close to seven months, and he’s well on his way to sitting independently.

ImageBack home three days after surgery

By the way, I was nursing a  headache as I wrote this, but pushed on because my kid has made it clear I’m a big wimp.

The NICU

Right after birth.

It turns out that if you spend 9 months growing a baby with Oreos (along with the requisite veggies, fruits and grains of course!), even if you significantly reduce your Oreo intake for the following 6 months, you will not be able to then jump on an elliptical and resume your previous 45 minute routine. In fact, after 4 minutes, you will probably have a near death experience. Just a random observation for today.

Soooo picking up from yesterday, the seizures began around 5 or 6. We hadn’t seen him for several hours because of both the regular newborn checkup and the cardiac one. It was actually reaching a point of, “Where is my baby?” frustration. And let me say, care at Northside Hospital is excellent. Communication between floors and departments…not so much. When we started trying to locate him, nobody could find him. We were told to call this nursery, then that and he’d always already been moved. I was told to ask my nurse.  She didn’t know either. This went on for a bit, and then I heard it. Chris was downstairs trying unsuccessfully to locate him as the alarm went off alerting the floor that a baby had been taken past the boundaries. Chris couldn’t get the elevator because they were on lockdown, and then he heard a security guard mumbling into a walkie talkie, saying something that certainly alluded to a baby being missing. This was the last straw that lead to Chris’s very loud and public demand to know where Connor was. And this is when they located him and informed us of the seizures. (The alarm was a staff member accidentally passing the boundary and would happen a couple more times while we were there. No missing babies!)

I wish I had written about this at the time because the emotions are hard to recapture 6 months later. But I could barely talk out loud about it for a couple months. But as scary as it was, we were still in the mindset of, okay, they’ll get these meds going and he’ll be home in a few more days. Well, a few more days stretched into 5 long weeks as the seizures were incredibly resistant to the medication, a hallmark of TSC. He started on phenabarbitol, then Keppra was added, and by the time he left he was on Dilantin as well. But he was still having an extraordinary number of seizures a day. At least 80 a day, maybe more. Many of them were subclinical which means only an EEG can detect it. They don’t cause the outward jerking. At this point it looked like we were gonna have to go on the surgery, so he was transferred across the street to Scottish Rite. I could have carried him over, yet it involved a $1500 ambulance transfer. Thank God for insurance.

I can’t believe there was a time when it was taxing to feed him 2 ounces (due to medication induced sleepiness) considering he’s now 6 months old and wearing 12-18 month clothing.

We met with his potential surgeon Dr. Chern at Scottish Rite. At this point we were finally miraculously seeing some improvement with the meds. He was still having a number of seizures, mostly subclinical, but it was decided that the benefits of waiting to do the surgery when he was bigger outweighed the cons. It would be safer in a few months. So after 5 weeks of driving to the hospital every day, he was finally released on April 23, 2012. And I have to say my husband got me through this. He was a rock. He had his moments, but I would have lost my mind without him. Just the simple fact of having a sick child is scary enough, but on top of that it shattered that “it can’t happen to me” belief that gets many of us through life. I’m a worrier by nature. Takeoff makes me nervous and the word cancer makes my stomach turn. And yet I still fly and could improve some health habits. Now for the first time, I truly realized that anything can happen to anyone at anytime. My plane could crash. I could actually get cancer. Fortunately we had so many other family and friends there to support us through all this. So thank you to all of you.

He never exactly had issues eating, but he would be so sleepy from meds and seizures that a feeding tube was used from time to time.

Connor’s official diagnosis wouldn’t come for several weeks. That’s the genetic test confirming his TSC, but from the rhabdomyoma in the heart, and the seizures, tuberous sclerosis was the immediate thought. He subsequently had an MRI for his brain, a kidney ultrasound, and an eye exam as those are areas most commonly affected. Thank God his kidneys and eyes were clear. But clearly the brain wouldn’t be. The tubers, including the one that would be surgically removed were evident. For my next entry I will get into the specifics of what TSC is.

Breastfeeding never worked out with all that was going on, so I pumped for the next 3 months until I couldn’t take being attached to the machine anymore. But it may have been for the best considering I had to carefully time my glasses of wine around pumping. Otherwise I probably would have knocked out a bottle on a nightly basis. When I tried going online for advice, I was shocked by how harsh and nasty a lot of the hardcore breastfeeding community is. It left me with a lot of guilt when I finally quit, but I had to for my mental state. It also left me disappointed that there was yet one more way in which women can be extremely unsupportive of other women. It’s easy to judge when everything goes hunky dory according to plan, isn’t it? I still have hostility about it. But women need to know that it’s extremely common to have problems with latching, pain, lactation failure, and many other things. So NYC’s Mayor Bloomberg can stick it where the sun don’t shine.

I can’t remember if this particular EEG was 24 or 48 hours.