Different Treatment to Consider

Well, Neurology came to see me today. The EEG showed minor improvement from the last one. The prednisolone is only a short term treatment. We were told that we could either bump up the dose slightly for another week and then start weaning her off, or start weaning her off now. The first thing they suggested as the next line of treatment was the Ketogenic Diet. Ugh. Most of what I know about it is that it's an enormous amount of work with calculating, measuring, weighing and preparing the meals. It's a mathematically calculated, doctor supervised diet high in fat and low in carbohydrates and proteins, and strictly limits both calories and liquid intake. It helps to control seizures and allows many children to become both seizure-free and drug-free. We know a family whose daughter is on the Ketogenic Diet and it has reduced her seizures by 90% and she is in the process of weaning off several medications.

Apart from that suggestion, they said there are a couple of other drug options to consider as well. They wanted me to talk to Francis about it and they'd be back first thing in the morning to see what direction we are wanting to take. I feel like they left this massive load on my shoulders. I'm not a doctor, how am I supposed to know what's the best route to take, I don't know how that is my decision to make based on a 5 minute conversation with a neurologist that I've never even met before. I hunted her down a little while later and said that I'm uncomfortable making a decision like this so quickly and she said that's okay, it's not that time sensitive.

This is so overwhelming. I don't know what to do. We kind of thought that at some point the Ketogenic Diet would come into play, but we certainly weren't expecting it yet. So much to think about.

On a lighter note, the Olympic Torch came to Children's this morning! I got the okay to wheel Taylor down with her IV pole to see the torch. It's Day 82 of the Vancouver 2010 Olympic Torch Relay. We got escorted to a special patient section and had front row seating, we were literally right infront of the action, how cool is that?!!! I watched the news tonight and we almost made it...I could see Taylor's IV pole, and the top half of her stroller. If the camera had come down one more foot Taylor would have made the news :-)

Another EEG

Taylor's follow up EEG was booked for today to compare it to the last one prior to her starting the prednisolone. Since we are still in hospital they did it as an inpatient. Her seizures have only slightly decreased since she's been on the prednisolone, so it will be interesting to see what the results of the EEG indicate.

The number of seizures Taylor has in a day is between two and three hundred. Yes, hundred. They mostly present as split second jumps resembling a startle response. She's also having some new ones more recently that are eye flutters, some blank stares, and some head drops. They vary in intensity and frequency. One night I sat and watched her and made tick marks in my book, over a 4 hour span I saw 29 seizures. Another night I counted 40 seizures in just half an hour. I've never sat and counted the number over an entire day, I don't think I want to know what the actual number is, it's probably more than I think.

Whatever the number, it's way too high, and we desperately need to get control of them. I just wish there was a magic pill to make them all go away.

Renal Ultrasound

IV antibiotics continue, and this morning we were called down for a kidney ultrasound. That proved to be quite the experience!

When we got into the room I went to take a picture of Taylor with the ultrasound machine behind her. I've been documenting her story right from the start, so that one day she can look back and hopefully read all about her journey. So as I went to take the picture the technician stepped back, didn't want to be in the picture which is fine, doesn't matter to me. After she squirted the gel on Taylor and put the transducer on her I zoomed in on Taylor and just got the technician's hand in the photo and kept the rest her out of it. At the end before she left the room she tore a strip off me saying that she is a health care worker, she's here to perform a service, she's not interested in having her picture taken, not even her hand, and how dare I. She even said "maybe you think this is fun or want to put it on Facebook"...yeah this is a freakin riot lady. What a cow. She reiterated that she's a health care worker and that if she wanted her picture taken she'd work in a resort. Yeah, well let me know if you do because that's a resort that I will never visit. I'm still stunned by this woman and how unbelievely rude she was. Thankfully she's the only person in Taylor's entire journey that we have had such a bad experience with. Out of spite on my part, I hope you thoroughly enjoy the photo attached to this entry, technician's hand included. Cause you know I just take photos of Taylor's hospital experience because it's fun...honestly how absurd!

Anyways, back to the ultrasound. Once the doctors reviewed it and came back to the room to see us they said that both kidneys are quite swollen and infected. With a kidney infection, they usually only see one kidney infected. So this is going to mean a longer course of treatment. Still just 14 days IV, but an additional week of oral antibiotics once we go home. Also, one tract going from the kidney to the bladder is slightly enlarged. This will be further investigated with a VCUG (Voiding Cysto-Urethrogram) to determine if she has urinary reflux, a condition that causes urine to move backwards from the bladder back up to the kidneys.

Rough Day

Well, by late this morning the diagnosis of urosepsis was made. Taylor had a kidney infection and blood infection. This is very serious but treatable. If untreated though, sepsis is life threatening. Thank god we came when we did. I can't even imagine where things could have gone if we hadn't been to the pediatrician's office yesterday and get sent to Emerg.

The bacteria growing in her urine and blood is e-coli and it is sensitive to both of the IV antibiotics that they started last night, so the treatment is appropriate. Duration of IV treatment is 10-14 days, and they want to go with 14 under Taylor's circumstances to be safe.

Taylor looked her worst today...sunken eyes, very lethargic and sleepy, unhappy. By this afternoon the doctors came back in to see us and asked us question after question about how Taylor has been in comparison to how she was presenting today. After we answered everything they said that they are actually quite worried about her and they think she has meningitis. I think our hearts dropped to the floor the second we heard it.

The next step was a lumbar puncture (spinal tap), needle in her spine to draw out cerebrospinal fluid. This was not pleasant. A nurse had to get up on Taylor's bed and hold her down so that she couldn't move. Half an hour later it was done, and then the wait. The longest two hours ever. But the wait was worth it because we were in the clear. Taylor does not have meningitis. Someone is definitely looking out for my little girl.

To say it was a rough day is an understatement!

Admitted to Children's

Last week I called our Neurologist's nurse because Taylor has been peeing like crazy and it has a very strong smell to it. I wasn't sure if it was something I needed to be concerned about, because it started shortly after she went on the prednisolone. She talked to Dr. Sarnat and had us go for labwork that night. They took bloodwork but we were unsuccessful getting a urine sample from Taylor. The bloodwork came back fine, Dr. Sarnat was concerned about blood sugar levels and they were normal. The nurse said we should follow up with our pediatrician.

We went to see him this morning to address a list of concerns, the peeing being one of them. He did a thorough examination of her and asked us to go straight to Emergency at Children's because he was suspecting a kidney infection. He was suggesting that Taylor should be admitted to hospital for at least a few days and at the same time have them investigate his concerns about her failure to thrive, she hasn't gained any weight in four months.

So we headed straight to Emerg from his office and didn't have to wait long before they took us back. Once we got in to Emerg we had to wait for quite a while in our room before the doctor got to us. Finally they took a urine sample via catheter and sent it for testing. Results came back very quickly confirming a Urinary Tract Infection (UTI). Apparently they are very common, and one of the top 10 things that little ones are admitted for. How she got it was likely three-fold. First, because she's a girl and the urethra is very short, secondly she's in the age group where they are most common due to being in diapers, and lastly because she's on prednisolone (which suppresses the immune system) so her body wasn't able to fight off the infection on its own.

The doctor admitted her as soon as the UTI was confirmed and said that it would require IV antibiotics and we'd likely be here for a few days. I came home once she was down for the night so that I could pack some clothes, and then headed back to the hospital to stay.

Little Swimmer

Today was a special day, Taylor's first pool experience! It was in the pool at Children's with her Physiotherapist. Unfortunately I was feeling flu'ish and didn't want to take any potential germs to the hospital, and Francis had an important work meeting. My mom saved the day and took Taylor for her first time in the pool and when they got home she was teary eyed and said it was the best time she's ever spent with Taylor. I must admit I was initially kind of jealous that I missed the experience myself, but I'm so very happy that Mom got to have that special time with Taylor. Taylor was a little unsure when they first got in, but the water was warm as a bath and she soon relaxed right into it and really enjoyed herself. Then, as they got out of the pool, they were wrapped in warm blankets. How nice is that?!