Emma's Grace

I just put my daughter in a turkey roasting bag.

That’s not all. First I tried a regular food storage bag…that wasn’t big enough. Next I tried a 2-gallon Ziploc bag, but I was afraid it wouldn’t give her enough room. So I settled on the turkey bag.

I did it all in the name of medicine.

Now, before anyone calls CPS on me, let me explain.

Dr. McCormick ordered a bunch of lab work done on Emma. Yesterday I took her to the lab at the hospital down the road, where Emma was born. They took 5 vials of blood out our little girl. They poked her in the main vain in one arm but decided it might not hold up for all those vials. They removed the first needle and inserted a 2nd one in the other arm. They did manage to get the blood they needed.

However, Dr. McCormick ordered a urine analysis. This hospital doesn’t have the nifty urine-collecting plastic bags that Children’s Hospital used on Emma during her first stay there. I was sent home with a cup. I’m supposed to collect a 6 month old baby’s urine. Can anyone tell me how in the world I’m supposed to do that?

So I made my own urine-collecting plastic bag. Out of a turkey roasting bag. I’ve got her naked up to her chest with her bottom half in the bag. She looks silly. I feel weird putting her in a plastic bag, but I’m not really sure what else to do.

She’s asleep now. I’m hoping she goes soon. Or else I’ll have to do it again this afternoon.

I’m also hoping that I can get her out of the bag without making a mess.

And I’m really thankful that she’s way too young to remember this.

** Updated **

Our first try didn’t work. I’ll be back at it again this afternoon.

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After a fairly uneventful hospital trip, we are home. We stayed for observation purposes since they put Emma on a new medication. We really didn’t have have our own room, just a spot enclosed with a curtain. But I had a reclining chair to sleep in and a little TV to keep me entertained a bit while we waited to see if Emma had any more seizures or adverse reactions to the Keppra.

While we were there, I asked for a hearing evaluation for Emma. We’ve wondered a little bit about her hearing. She does react to noises and voices, mostly her eyes get very wide and she kicks, flails, and smiles. But she never really turns her head. We wanted to make sure it wasn’t a problem with her hearing. She passed the test. They did say that I should come back in 6 months for a follow-up test.

The Keppra seems to have worked well. She was seizure free the entire time we were there. My biggest problem was coming home. I stopped by CVS to drop off the prescription. I decided to not wait the 30 minutes and just come back. After I picked Matthew up from Amy’s house (Thank you Amy!), we ran back to get the medicine. And then we arrived to find out that the insurance didn’t cover it…and that for a month it would cost $260.99. That was for 30ml of medicine. I went into panic mode. I had to figure out what to do since Emma needed her dose of that liquid gold by 6pm and it was 4pm. I called the neurologist’s office, but their message said their were closed. Thankfully, a nurse practitioner got my in touch with Dr. McCormick, who in turn hooked me up with a sample of the medication. The sample will get us through the next month.

Jon looked into the medication problem, and it turns out that the Keppra is covered. However, it falls under a higher level of copay and the insurance company needed to be contacted to verify that. Now that it is covered, it will only cost $25/refill (which should last for a month). That is on top of the $10/month for the phenobarb. Seriously, even before Emma was diagnosed with seizures, with just the prenatal care and birth, I couldn’t understand how people managed without insurance. Now, after tests, our initial $6,000 hospital stay, and medication, it’s even worse.

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Unfortunately, the increase in dosage of phenobarbital did not control the seizures. They appeared to be a little more mild, but it is really hard to judge. This morning, Andi called the neurologist to ask what to do. Initially, she suggested increasing the dosage another step (6 ml twice per day), and to get blood tests to check the level. However, when Emma had more seizures and Andi called back to ask how quickly the meds should kick in, Dr. McCormick said to take Emma to the ER at Children’s Hospital.

At the ER, they did the blood tests, and found that Emma’s level of PB was at 34. That level should be effective, and is too close to the toxic level (40) to risk upping her dosage. Therefore, they are starting her on an additional anti-seizure drug, Keppra. Because she’s starting a new drug, and because they don’t know if it will be effective, the are keeping Emma over night for observations. Andi is staying with her, while I’ve been home with Matthew.

This isn’t entirely unexpected, but is disappointing. When we next see the neurologist (scheduled appointment in 2 weeks, may fit one in sooner) we’ll learn better if this is a cause for concern, or just a bump in the road along the way.

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We managed to get through physical therapy this morning, however, it was not seizure-free.  She had about 5-7 seizures during our session.  Despite the seizures and the grogginess that ensues, she did very well.  Ralph was very happy with her progress over the past week.

I talked to Dr. McCormick today.  She decided to up Emma’s dosage as well as give her an extra boost in the middle of today.  I was to give her an extra 2ml of meds when I got home after lunch.  And now her dosage will be 5ml in the morning and 6ml in the evening.

I gave her the extra 2ml just after 1pm.  Starting around 5pm she started really crying and I think she was seizing.  It was difficult to tell at times.  I think she’s having a digestive problem at the moment and it’s causing her some discomfort.  I’m hoping that giving her some apple juice will solve the problem.  Last time we tried prune juice, but it didn’t seem to help.  She had seizures for most of the evening and finally fell asleep just before 8pm.  I managed to get her medicine down while she slept.  She has been sleeping peacefully since then but she had a rough evening full of seizures so she will need the night to recover.  If she has more seizures in the morning, then I’ll be calling Dr. McCormick again.

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It’s been a hectic week. This week we noticed that out of nowhere, Emma would start to breathe heavy which lead into an anxious, scared cry. We thought she might be experiencing more emotions as she’s getting older. We also wondered if she was feeling sick and maybe a sinus pressure/headache problem.

Friday morning, around 9am, I gave her the phenobarb. We ended up having a long evening at a rehearsal dinner and she got her 2nd dose for the day just after 10pm. This is longer than she usually goes between doses. I give her a morning dose between 8:30am and 9am and her evening dose 12 hours later.

Saturday morning, we got up and she had her dose of medicine around 9am. Jon spent some time with her in our bed. He noticed that she was staring out the window, but it was dark in the room and the bright window would naturally draw her attention. She was also seeming slightly spacey, but he thought it was just sleepiness. She had been sleeping a lot during the mornings and early afternoons for a couple of days, which led to very late bedtimes. Again, we thought it was a symptom of the cold that the rest of the family had already dealt with. In looking back, he thinks she had about 5 absent seizures with crying while he sat with her. We attended a wedding at 2pm. Emma spent the whole day awake with only 1 or 2 very short cat naps in the afternoon. She was spacey/sleepy at times. She did the anxious cry only once or twice the whole day. She finally fell asleep around 6pm. She woke up around 8:45pm and was her usual happy self. I gave her her medicine at 9pm.

Sunday morning’s dose of medicine was a little off due to me forgetting about the time change. I gave it to her at 9am (after the change). Again, this was longer than she usually goes between doses. However this morning she was definitely having seizures with the same rigidness and posture that she had previously. She seized on and off for 2 hours before the medicine really seemed to stop them. They seemed to be fading as the time got longer. She had about 10 rigid seizures and about 10 more that seemed like absent seizures followed by the crying. Emma slept for the late morning and early afternoon. When she woke up, she was back to being a happy baby. Just before 8pm she started having seizures again. I gave her her medicine at 8pm. She continued to seize until 10:30pm. That 2.5 hour period had about 20 seizures, most with rigid body parts and crying. For the last hour of that she mostly slept, only waking up to have a seizure, cry, and then back to sleep.

We’ve read that the phenobarbital that she takes is weight based. We are hoping that she just needs a corrected dose of medication. First thing in the morning I will call Dr. McCormick to see what we should do. I will keep everyone posted.

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We’ve taken a moment to partake in the traditional night of Halloween. Here are our cute kids. More photos can be found at our photo gallery.

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