What I Did This Summer

Sadie working on an art project
during school.

It's been a while since my last blog post - and a lot has happened in that short time. At the end of the last post, Sadie was being treated for pneumonia in the PICU at Lurie Children's Hospital. She was able to come home in mid-May after about a week in the hospital. She went back to school a few days later. Her regular school year ended in late May, and Sadie started her ESY program (or Extended School Year) in early June. ESY is essentially the same thing as school - same hours, days, etc., but it runs only through the end of June.


In early July, we took a short family vacation to a lovely beach house on the east side of Lake Michigan. The weather was great - "Sadie weather," as we call it - mid-70's with a nice breeze. Because Sadie has a hard time regulating her temperature, we try not to take her outside if it is too warm.  Sadie got to enjoy the beach for the first time and put her little toes in the sand. She also enjoyed laying on her towel in the shade - a regular bathing beauty!

The following week, we were preparing Sadie for surgery. For some time now, we had been speaking to her neurosurgeon and epilepsy doctor about placing a VNS (Vagus Nerve Stimulator). I mentioned the device and how it works in a previous blog post. Essentially, it helps to control erratic brain waves through a series of pulses to the vagus nerve. The device also comes with a magnet that can be "swiped" at the onset of a seizure - and has the potential to stop or decrease the severity of a seizure.



Staying cool at the beach.

However, in typical Sadie fashion, a curveball was thrown at the last minute - and the VNS surgery was changed to a shunt revision procedure. You see, in addition to speaking to the doctors about the VNS, they had also been monitoring her shunt function. Despite multiple shunt taps and MRIs, Sadie's team of doctors wasn't convinced that her shunt was working properly. The MRI continued to show enlarged ventricles - which is an indication of excess fluid in the brain. So, two days prior to her scheduled VNS surgery, the procedure was changed and Sadie underwent a shunt revision.

During a shunt revision, the doctor checks all the components of the shunt - the catheters into the brain and down into the belly, as well as the valve function. The doctor explained that he knew there was an issue as soon as they opened up the incision, as fluid was pooling around the shunt. This is an indication that the valve was not working the way it should. The shunt valve - which was a fixed valve - was replaced with a programmable valve. With this new valve, the rate of flow can be adjusted if necessary.

The procedure itself took about 2 hours, and Sadie did great in recovery and was out of the hospital the next day. An MRI is scheduled for this week to see if this new valve is set to the correct setting. But, we are hopeful that this procedure corrected the issue with her shunt once and for all!

We are anxious to proceed with the VNS surgery. Sadie's seizures are still quite difficult to control. She has now tried 15 different treatments - a variety of medications, ketogenic diet, surgery - and she is still having seizures daily - sometimes more than 20 per day. We are hopeful that the VNS will help control at least some of these seizures. Another Aicardi mom conducted an informal poll of parents, and of the 20 parents who responded to her survey - 50% saw a reduction in seizures by half or greater. Pretty good odds, in my opinion.

How a VNS works

While we wait to schedule her VNS surgery, Sadie will again be enrolled in RIC's (Rehabilitation Institute of Chicago) Day Rehab program where she will receive intensive therapy until school starts back up. Three days a week, two hours a day. I heard her give an exasperated sigh as the doctor and I discussed this therapy schedule. However, she progressed so well when she did this therapy post-brain surgery last Spring, I can only hope that it will help her just as much this time around.

Hope. It's something I've been thinking a lot about lately. As I mentioned, Sadie's seizures are still terrible. I'd be lying if I said there aren't many days when I feel hopeless - as if there is nothing else we can do for her. I do understand that there is the possibility that VNS therapy will not work for her. But, all we can do is HOPE.

It's this hope that keeps me from staring at the bottom of a bowl of brownie sundae daily. On the contrary, we've been doing our best to stay healthy - (trying to) eat right, getting to the gym, etc. - attempting to stay healthy for HER. But that's a topic for another blog post. For now, we are hanging by our fingernails to those strands of hope.

In With the New

Sadie on her birthday.
Before her first day of school.

It's been a whirlwind of a month for Sadie - turning three, starting school, a birthday party, new swingset, new bed. Lots of changes. I can adjust to change pretty well, but tend to get a little anxious when everything changes at the same time. That's exactly what has happened over the past month.


Sadie exhausted after her
first day of school.

As I've mentioned in previous posts, at the age of three, children with special needs stop receiving therapy through the Illinois Early Intervention program, and are eligible to start receiving therapy services in school. It doesn't really matter when the third birthday is, if it's the last week of school or the first week - they can start right away. Because we didn't want there to be a gap in Sadie's therapy, school started right on her third birthday, Monday, April 29th. 

Our school district gave us the choice between two out-of-district special needs schools for Sadie. After visiting both schools, we decided on a public school about 20 minutes from our home. We really liked the staff and the way they worked with each child's individual strengths.

Enjoying pool time at school!

Sadie has a nurse specifically assigned to care for her during the school day. The nurse takes care of monitoring seizures, oxygen, feeding, administering medicines and cathing for urine as needed. But she also plays with Sadie throughout the day - attending all of her therapies and even going in the pool with her during swimming time! Sadie is now two weeks in, and I can't say enough good things about Sadie's school, her classroom, and all the nurses, teachers, therapists and aides she works with.  Between circle time, music therapy, PT and OT, art projects, and weekly field trips - Sadie is one busy girl!

Sadie's birthday cake

We had a wonderful time celebrating Sadie's third birthday with her friends and family. She got to eat her special ketogenic cupcake, open lots of gifts, and play with all her friends and family. She has also been enjoying her new swingset. The picture below shows her on her new JennSwing, a special needs swing. Sadie's uncle Colin helped set it up in our backyard. Every day, when the weather is warm (which can be hit or miss in Chicago), we take Sadie out on her swing. She really enjoys it, and generally enjoys being outside as well.

Sadie enjoying her
new swing.

Thanks to two very generous organizations and some special people, we have ramps in and out of our house now too. One out to the backyard, and the other out to the garage - making it easier to get Sadie outside on these beautiful days! Once we are able to purchase Sadie's wheelchair-accessible van, we will no longer have to lift her in and out of the car. Saving her discomfort, and our backs!

This month, Sadie also transitioned out of her crib and into her big girl bed! Insurance approved a SleepSafe bed for Sadie. Which is, essentially, a hospital bed that doesn't look like a hospital bed. The head and foot of the bed articulate, it has full side rails, and the entire mattress raises and lowers. It will be great for Sadie long-term.


Sadie's new SleepSafe bed.

So it's taken some time to get adjusted to everything  new happening in our lives. And, in the midst of all this "new-ness," Sadie suddenly got very sick. She began breathing heavily, needing oxygen at home, and her heart rate skyrocketed. We took her to the ER on Saturday afternoon and as of today, she is still here. She is being treated for pneumonia in the PICU (Pediatric Intensive Care Unit) at Lurie Children's Hospital. I have been posting periodic updates on her Facebook page. But, things are looking up and we hope to have her out by Friday and back to school on Monday. Keep your fingers crossed and say some prayers that she continues on this positive path!

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.

P.S. Like my Facebook page for more frequent updates on my adventures: http://www.facebook.com/friendsofsadiemccann