RobBushway.com

Yesterday was a good day – only two seizures. So far today – only one. Maggie’s doctor is comfortable enough in her stability to let her go home – yeah!!!

The doctors are not much further along in determining why all of this is going on, except that they are definitely originating from some deep areas in her brain, and the doctors will do some more testing, analyzing current tests, and research to find the reason. Right now, they are just happy ( as are we and Maggie ) that she is stable with new medications.

We’ll see what God will bring tomorrow and the next day, but for now we are grateful for the gift He has given today.

Thank you for your wonderful support during this time. I suspect this will be a long year….

Rob and family

Maggie had about 11 seizure episodes today, so she won’t be going home until later this week. Maggie’s doctor is experimenting some more with her medicines over the next couple of days before he’s comfortable in sending her home.

Maggie is disappointed, but it has been good for her to have visitors and friends to see.

Maggie had her best day since being admitted to the hospital on Friday. If she has a good night tonight and morning, she’ll likely go home Tuesday afternoon!

We are learning more about the test results from St. Louis and the test results being done here.  The doctors are not seeing any temporal lobe seizures, which is great news. However, they are seeing some definite abnormal activity from the insula  region, which is beside the original tumor bed. This is information they were only able to glean from the MEG test we went to St. Louis for. They just don’t know what the abnormal activity is, what is causing it, and what to do about it. The result of that abnormal activity  is what Maggie ends up feeling and outwardly displaying. We don’t have an estimate on when some conclusions will be released on those tests. They are diligently working on it, though. We just have to remain patient…

The good news is that Maggie is feeling much better on her new medicine and recovering from the events that put her in the hospital on Friday. Our prayer is that the new medicine will hold until we are able to get some firm test results.

Thank you for your wonderful emails and encouragement. I can’t wait for our family to be together again on Tuesday night and to be waking up together in the same house on Wednesday morning. There is nothing like sitting together in the morning, drinking coffee, and watching Dax and Maggie help the little ones pour milk into their cereal.

Yes, Maggie is still at the hospital. It has been a long, weary stay.

It has been a constant battle of getting Maggie stabilized, and then battling side-effects from medicines that often times present themselves as seizure activity and pseudo-parkinsons. Earlier today, it looked like Maggie might be able to go home, but then started having seizures again. Maggie is very weary and tired – as is the rest of us. I was talking with Dax on the way home tonight, and he said what we are all feeling – " I hate brain cancer, I hate seizures, I hate that Maggie is hurting like this, and I hate what this does to our family."

Please pray that the test results from St. Louis will come quickly ( like Monday….) and that the doctors here and there can match things up to find out what is wrong with Maggie and what they can do to help her immediately.

At this point, I’d be surprised if Maggie is home before Wednesday.

Maggie woke up this morning having more seizures that lasted about an hour and 10 minutes, then stabilized. I don’t think she’ll be going home today.

At home with the kids, crashing, catching up on sleep. Kathi is at the hospital.We’ll swap up tonight.

This morning, around 9:30, Maggie was rushed to the emergency room due to seizures that couldn’t be stopped with rescue meds. It was a frantic scene at the house with an ambulance, fire truck, and the other kids crying in disbelief about what was going on.

After admitting to the emergency room, the seizures finally stabilized around 3:00 this afternoon after several doses of adavan and other drugs. The doctors admitted Maggie to Children’s Hospital ( Colorado Springs ) for monitoring and more stabilization. Maggie will probably be here until Sunday.

We still have not gotten results from the testing done in St. Louis. The doctors are still analyzing and studying those tests.

We made it home!

We got stuck in a big ice and snow storm in Kansas last night with cars going spinning off the road all around us. So – we decided to pull off in Salina and stay the night there.

It is good to be home. Maggie is a totally different girl right now than she was on Friday. What a difference sleep and medications make.

We are now anxiously awaiting results of all the tests from last week. I’ll update the site when we get word.

Thanks for praying for us.

Update 3: Maggie gets released from Children’s on Friday morning, gets her MEG test done at 11:00 am, and then we head back to the hotel. We head home on Saturday to give for Maggie to get settled on her meds and wait for the ice storm that has hit Missouri to clear out.

Update 2:  Things are quite fluid here. The doctors are concerned with Maggie traveling and getting ramped up on her medicines so quickly – wouldn’t be good to get stuck in Kansas with Maggie having seizures. I’m not sure when they will release her at this point, but it will be sometime this weekend. Her updated MEG test is still on Friday.

Update: Change of direction – The new MEG test is tomorrow at 11:00 am, and we’ll be checking out of the hospital then to go do it, then headed home after the test over. We’ll be home some time on Saturday – read more below.

Maggie’s doctors want to keep her through Monday to do some more monitoring, as well as do some more tests on the MEG. They picked up some good signals from the MEG test on Monday, but want to try and pick up more data from the insula region of the brain, especially with her being un-medicated. The insula region is their primary focus of concentration right now. That area is where the tumor was originally resected from, is quite deep, and where they are seeing most of the activity from the EEG come from.

Maggie’s seizures  began taking off around 4:00 yesterday afternoon. Although they have not been terribly rough seizures, the doctors have been able to pick up some great information from them. It looks like the seizures are coming from some deeper parts that they can’t see well. They are hoping that the MEG test Maggie took on Monday is going to reveal some more information to confirm that.

As of right now, they are looking at modifying some of Maggie’s medications to better target the type and location of her seizures. They feel it is safer right now to experiment some more with medications rather than do invasive monitoring. The depth of location in the brain and location of blood vessels surrounding the seizure location is making surgical intervention an unlikely possibility.

Although it could change later today, we’ll likely we’ll be leaving to come home some time on Friday, arriving on Saturday.

They doctors are going to reintroduce Maggie’s meds later today. She’s doing fantastic.