Friday, January 25, 2013

A Rocky Start

Sadie with her EEG leeds (and bow) on.
Well, 2013 started off quite rocky for Miss Sadie. We were hoping that we would start to see a decrease in seizure activity after her shunt was placed. Unfortunately, that's not what happened.

Let me back up a bit. Sadie went in for shunt surgery on December 27th. The surgery itself went quite smooth, lasting only about 45 minutes. Post-surgery, she wasn't herself and seemed to be a bit uncomfortable. Despite pain meds, she had a restless night and was quite twitchy. A CT scan showed no issues with the shunt, so the docs ordered an EEG to check for seizure activity. About 20 minutes into the EEG, she had a big seizure - probably the scariest one I've seen to date. Sadie stopped breathing twice, turned an awful shade of blue, and oxygen levels dipped to 40% both times. A slew of nurses rushed in to administer oxygen. She seemed to come out of it fine, but it was quite scary nonetheless.

The EEG showed two focal seizures had occurred during her cluster of infantile spasms. Emergency seizure meds were administered, which calmed her brain down. The next day she was back to herself and was discharged from the hospital.

As I mentioned, our hope was that the shunt placement and subsequent fluid decompression in her brain would result in fewer seizures. Unfortunately, the seizures just continued to escalate in severity and frequency, until finally I wasn't sure if she ever fully recovered from one seizure before another started. On January 8th, we decided that we weren't comfortable managing this at home any longer and took her to the ER.

In the hospital bed with her angel doll.
Ultimately, she was in the hospital for a total of twelve days. The shunt was fully examined and was functioning properly. So...the question remained, what was causing the seizure increase? A full evaluation was run - CBC blood counts to check for infection, nasal swabs to check for signs of respiratory viruses, urine samples, chest x-ray, etc. No evidence of infection or viruses were found. In fact, other than the relentless seizures, she seemed to be perfectly healthy.

The doctor concluded that perhaps movement of some of the brain tissue was causing seizure activity, either that or she simply needed a tweak to her seizure medicines - or some combination of both.

The Epileptologist on hospital service happened to be Sadie's own doctor, who knows her quite well. She was able to quickly evaluate Sadie and recommend a course of action. She started her on a four-week course of high-dose steroids, Prednisone, to calm seizure activity. She also put her back on Dilantin - a medication that has seemed to work successfully for Sadie in the past. Additionally, we increased the dosage of a few of her daily seizure medicines, including a new medicine that she recently started, Banzel.

Over the twelve day hospital stay, she went from seizing almost non-stop, to having a few seizures an hour, to a seizure every few hours. While this may still seem like an awful place to be (and trust me, it is...) she's in a much better place now than when she entered the ER.

Smiling at Daddy.
Never short on challenges, Sadie decided to embark on a pee and poo strike while she was in the hospital. (Caution, if bodily functions gross you out, stop reading now...) Now, as many of you know, pooing daily has never been Sadie's specialty. Recently, it's taken a liquid suppository every three days to get the girl cleaned out (or have a poo-nami, as we call it). However, while hospitalized, she decided to escalate this to a whole new level. Two suppositories on day 3, two enemas on day 4...and still no poo. It finally took a third suppository on day 7 to get her to have a bowel movement (now escalated to a poo-splosion). How she kept all that inside her for seven days is beyond me.

Onto the pee situation. Sadie occasionally holds her urine. Sometimes, she'll go as long as 6 hours, then flood through everything she happens to be sitting on - chairs, beds, daddy's lap, etc. However, during this hospital stay, peeing was not something she was interested in. At one point, she held her pee for 16 hours before the nurses cathed her. The urology team then got involved in Sadie's care. They started her on a medicine called Cardura which helps with urinary retention. We were also instructed that we should cath her at home every four hours if she isn't going on her own (oh, joy). Sadie will go in for a urodynamics study in a few weeks to try to get to the bottom of the issue.

We've been so consumed with Sadie's surgeries and health issues, that everything else has taken a back-seat. We've been working with our local school system to try to determine an appropriate school for Sadie. At the age of 3 (which she will be on April 29th - yikes!), her in-home therapy services through Illinois' Early Intervention program end and she will receive therapy through the school system. We visited a local school in mid-December, which we really liked, but just didn't feel like it was the best fit for Sadie. We will visit a few more schools in February.

So, we hope that 2013 will begin to trend in a positive direction. Heaven knows we could use a break. And, more importantly, so could Sadie.

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