A Laughing Matter

Journal entry by Barbara Bradley — Nov 25, 2010

Happy Thanksgiving! I know this update comes late. Katie had meds due at 11pm so instead of risking waking her and her not going back to sleep I kept her up.

I got an email today from either Barnes and Noble or Borders with the subject line: Tomorrow is Black Friday – Are you ready? The answer is “yes”.

I was asked permission for Katie to participate in two genetic studies for epilepsy. For one they will take blood and the other they will use a portion of her brain that is removed. And…. I signed consent forms yesterday giving permission for the surgeon to disconnect half of her 3 yr old’s brain. What kind of person does this? The kind of person that is tired of seeing her daughter seize and stop breathing 50 times a day, the kind of person that wants her daughter to learn and develop without being held back from 5 daily seizure medications, the kind of person that is exhausted from staying in fight mode nights on end. Simply, the kind of person that wants to give her daughter a new life.

How are we doing today? That is the million dollar question. It’s been a great day. A local church brought turkey and all the fixings for the pediatric floor. It wasn’t home cooking but I was certainly not complaining. After all, I assumed we would be getting our turkey fix in the hospital cafeteria. Katie had a good day. She was in the best mood since we have been here. We ventured out to her favorite fish tank elevator and then stopped in the main lobby where they had a piano player. She LOVED it. She just watched his fingers glide over the keys and would turn back and smile at us.

We got moved to a different room this morning to the step down unit which is a step down from ICU. She made the nurses nervous in the other hall with all her episodes of not breathing. One of the first things they did over here was replace her IV. The nurse called in another nurse to help. Now Katie has a new crush. Yeah, this kid’s got game! Adorable nurse Rob helps with her IV and talks to her to distract her. She is a savage flirt. He was asking her, “Where are your ears?, Where’s your tongue? “. As he was leaving she pulls the pillow down that is blocking her view watching to see where he went. What am I gonna do with her?

The count down has begun. The seizures I log in her journal tonight are hopefully the final ones. Surgery is on for 7:30 am and they will come get us between 6:00 and 6:30. The surgery is slated to last between 4-5 hours.

I hope everyone had a nice day with their family and was able to take a moment and reflect on what they are thankful for. If you are one of those crazies that shops at 4 am in the morning, please stop and say a little prayer for us.

Journal entry by Barbara Bradley — Nov 24, 2010

I was on-call last night with Katie and although she finally fell asleep at 11pm I had to wake her at midnight for one of her meds. After waking her, she doesn’t go back to sleep until 4am! That’s right. Since late Sunday she has had a rash and she was miserable last night. They gave her something around 3:30 and that allowed her to finally sleep. Unfortunately, around the 6-7 am time people start coming in and waking us up for this and that. So frustrating! It’s a good thing hospital doors don’t lock because I would never allow anyone in.

More fun began when the pediatrician came in and asks more about her rash. He had sent dermatology by a couple days ago and they are still not sure of the cause whether it be a reaction to bedding, drugs or a virus. Then it comes.

“I will need to follow-up with dermatology, neurology and anesthesia because if this is a virus the surgery can’t happen”.

You could have knocked me over with a feather at that comment. What?! I have been fighting to get this surgery moved up and this little peds doc is gonna open a can of worms. My daughter stops breathing 30+ times a day and you want to delay this for a few bumps that no one can even determine cause?? I literally envisioned throwing him out the window.

I waited all day wondering if this opportunity is about to be taken away and what am I going to say this time. I don’t have it in me to fight and plead anymore. Around 1pm the dermatologist and another pediatrician came by and he looked at Katie again. The rash is still there. Some places are better but some places are worse. He said as long as she doesn’t have fever this should not prevent surgery. I still keep checking her obsessively and I hold my breath every time they take her temperature.

She is still having between 20-40 each day and she stops breathing. This is where everyone weighs in the risks and benefits. I don’t see anyone thinking a little rash should hold up a surgery there is only one opportunity for between now and mid December. I can not handle one more thing. So, if that little peds guy comes back to interfere again I think I just may throw him out my window.

One more day. We just have to get through one more day. Pray the rash just goes away completely so that we don’t have to worry about this at all.

Journal entry by Barbara Bradley — Nov 22, 2010

I survived another day. The total number of seizures climbed to 40 yesterday, and I was so exhausted I know I didn’t catch them all. Since she slept about 16 hours straight from all the seizures and meds, she was up at 4 am this morning. I heard giggling and look up from my sleepy stupor to see her peeking at me from the crib slats.

“Go to sleep, Bug,” I say.
“he he he hee,” she laughs.

I ended up putting on a video for her and was tortured with Dora and Blues Clues for an hour and a half until I just give up on going back to sleep. Everything here beeps and dings, someone is always coming in the room, there is construction going on outside, and we are right by the nurses station which is like getting the hotel room by the ice-maker.

Mid- morning they finally came to get us for her MRI. By the way, she has these ridiculous plastic looking jeweled markers glued to her head which are needed for the MRI and will remain until surgery. They are supposed to work with a wand and computer screen to allow for a 3D picture of the brain as they operate. Science and medicine are cool. Around the nodules they drew with a sharpie in case they fall off between now and Friday. The jewels along with the rash on her face make for one pathetic looking little girl.

Today is a week we have been here and rooms are starting to empty with new children arriving. The staff has written “Happy Holidays” on all the windows of the rooms. I am learning all the nurses and doctors. Mary brings the food trays and tells you “It’s hot, sweetie!” everytime she puts the tray down. I know they don’t serve pancakes in the cafeteria on the weekend (this should be a crime). I know where the stash of popscicles and tiny cups of icecream hide. Every day right at 1pm they announce over the loud speaker that it’s quiet time which is ironic, isn’t it?

Of course, the most important update is we learned the surgery time is 7:30am Friday. Just a few more days and then new challenges will present themselves with recovery. One day at a time.

Journal entry by Barbara Bradley — Nov 19, 2010

Unfortunately we are in the same place despite efforts to keep her seizures at bay. Katie had 21 yesterday. When the neurology team came by mid day I was very frank with them….

I would like nothing more than to get her stable and go home but nothing is helping. How long do we continue to fight something we already know how to fix? I am not taking her home like this and I am not staying here until December 14th so this really is just a scheduling issue at this point, right?

Every day of highs and lows has been preparing me for the big day and today was certainly no exception. I didn’t sleep well thinking and wondering what the surgeon was going to tell us this morning.

Dr. Grant came to meet with us personally this morning and the second he sits down Katie pops up from the crib, smiles her gorgeous smile, batts her long lashes and says with the articulation of a speaking child “hi!” while waving at him. I almost burst into tears right then. As it turns out Thanksgiving is a holiday but Friday is not and he is here through Tuesday of next week. So, Friday is the day. In the 12 years I have known my husband I don’t think we have ever high-five’d but the second Grant closed the door we did just that! God is good. Nothing is impossible.

Unfortunately the rest of the day has gone downhill. Katie has been drugged up most of the day and has been sleeping….and having lots of seizures. I think the count is 27 so far and the night is young. They gave her some atavan which has only knocked her out so much that she is getting meds via IV now. This evening was very scarey. At 7 pm the nurse came in to give her meds and she went into a seizure and stopped breathing. I have seen her turn blue and her oxygen drop to 39 but never down this low for this long. The nurse starts grabbing the oxygen bulb and then Katie dropped all the way down to 7 and she throws the bulb down, hits the code blue button and yells down hallway for everyone. Oh my God! It’s bad enough when I was by myself and hit the button last time we were here but when a nurse gets nervous that is a time to panic. Thankfully the seizure ended and she recovered quickly after that. Now everyone is really on high alert.

She is getting meds via IV right now and getting fluids because she is too out of it to eat or take meds. She can’t have food after midnight anyway because her MRI is with sedation in the morning. As if she isn’t completely sedated as it is.

Four more days. If she can just hold out til Friday she will have a new life. We will all have a new life. Then I can worry about school and boys and driving and all sorts of things.

So much for my “Christmas miracle” instead we will have a very thankful Thanksgiving…..while we eat turkey in the cafeteria 😉

We can’t say thank you enough for all the prayers. Prayers…. and my big mouth saved the day!

Journal entry by Barbara Bradley — Nov 16, 2010

For those of you that don’t know, Katie was admitted to Duke Hospital last night. The weekend showed no sign of improvement with 20 seizures a day. The plan was to just have bloodwork drawn Monday afternoon to get another phenobarbital level to see if we could increase it. However, around 2 pm she started having seizures every 10 minutes or so while awake and then she didn’t want to wake up.

So, here we are again. They increased her phenobarbital quite a bit and she was sedated heavily last night and this morning. Dr. Mikati came to see us this morning and we are trying this first. If it doesn’t work, there are a couple other tricks up his sleeve. If they don’t work, emergency surgery is an option. Although I am at my breaking point, I don’t want this to be an emergency situation. Her best chance of success is to get her stable and let the depakote get out of her system completely.

My hope is to get her stable this week and get back home. We bought tickets to fly home to spend Thanksgiving with family. We knew it was a gamble but we figured if we wanted to go we better go before surgery.

So…we wait… Last night she had 8 which is better than 20 but she also had 8 this morning. I guess tonight and tomorrow will give us a better idea if this will work.

Thank you for the prayers and support.

Journal entry by Barbara Bradley — Nov 12, 2010

Prayers needed. The past couple days have not been good. Wednesday night Katie had 18 seizures. As with contractions, when seizures continue to happen every 5 minutes you better be on your way to the hospital. Billy took her to the ER just after 1am that morning and they drew blood to check her phenobarbital level and gave her an IV of phenobarbital to “load” her system. They got home around 4:30am and she slept much of the afternoon yesterday. Last night I was on-call and she had 11 more. I gave her the diastat twice. I wasn’t even sure that was okay to do but it was that or back to the ER.

I don’t know the answer but I do know we can’t keep going like this. Diastat can’t be the answer every day. As of now, insurance will only let us fill 10 does a month and if we pay out of pocket they would be $350. I guess those insurance morons would rather pay for an ER trip than an emergency medicine. I don’t know how to put a limit on the number of emergencies.

Pray we are able to get a handle on this soon. December seems FOREVER away right now. 

Journal entry by Barbara Bradley — Nov 10, 2010

Thankfully I have an update for you. The details have started to come together in the past few days. On Friday, November 5th (Katie’s 3rd birthday), her case was discussed by the Duke epilepsy board and it was agreed by everyone that surgery is her best option. I have been talking with Dr. Mikati and Dr. Grant the neurosurgeon over the past couple days finalize the details.

I got a call from Dr. Grant’s nurse this morning and we have surgery scheduled for December 14th. We can get this over with this year, Nathan will have time off school already, this will be better for us in terms of deductibles, and this could have us home for Christmas. Who doesn’t love a miracle with Christmas as a backdrop? We can literally start her new life as we ring in the new year. 

Now for a reality check. She is having a lot of seizures these days. We have had more nights than I care to think about that she has been given a total of 6 meds (including Diastat) and has still had 10 seizures over the course of the night….exhausting. Needless to say I called the on-call doctor yesterday with this concern because she has now been on the new medicine phenobarbital for a week. Come to find out, the pharmacy didn’t fill the prescription right (most likely due to the chief’s handwriting). Last night we started the correct dose and we already saw fewer seizures last night…. too many still but hope for better days to come.