RobBushway.com

One of my most favorite days are those that beg you to turn on some classic Margaret Becker, change in to your sweats, and get lost on the couch with your favorite blanket. The soft pelting of rain outside always being faithful to lull you away in a sleep that seems to go on forever.

After a while, you gently wake up to the smell of coffee and notice your spouse curled up in a chair, taking in the heat from her mug, looking longingly at the clouds and rain outside. You hear some soft celtic music playing in the background, and then doze off again. Quiet rest….

Those days don’t come often, but God seems to always bring them when they are most needed.

Several folks have asked about our flight info for Wednesday. We leave St. Louis on Wednesday at 9:49 am, and arrive at the Colorado Springs Airport at 4:25 pm on United flight 7192.

We spent some relaxing time at the Missouri Botanical Garden today. If you’d like to view our pictures, you can do so at this link.

Relaxing at the hotel room with some great "feel good" food and breath mints from the Paulton’s

Looking at some wonderful reminders from home, thanks to the Paulton’s.

The doctors are releasing Maggie from the hospital today!!!

We’ll be hanging out at the hotel, visiting the zoo, Botanical Gardens, and more while we wait for her VNS surgery on Tuesday. Funny thing: in all the hustle and bustle of leaving Colorado Springs, we forgot to pack Maggie a pair of shoes. So, we’ll be going to the mall today to do a little shoe shopping.

I’ll be buying plane tickets today for a flight home on Wednesday.

It should go without saying that the past month has been extremely trying – what I like to call "living in shades of gray".

The good news is that Maggie is much better than she was when this all started. She is doing so well that the doctors are considering releasing her on Friday. She’ll have the vagal nerve stimulator (VNS) implanted either Friday or next Tuesday through outpatient surgery. We’ll learn more about the scheduling later today. If it is done Friday, we’ll be home this weekend. If it is next Tuesday, we’ll be home on Wednesday / Thursday. UPDATE: The VNS surgery won’t be happening until Tuesday.

The bad news is that the most recent SPECT scan, done on Tuesday, was not as helpful as the doctors were wanting. It made some things clearer to them, but not enough to show them where to stop resecting – which isn’t good. It is likely that she was still having minor seizure activity during the test. So, the doctors would like Maggie to do another inter ictal SPECT test ( completely seizure free) sometime in the next couple of weeks after things settle down at home, the VNS begins to work, and the new seizure med ramps up. The doctors have to rule out that her seizures are not originating from the other side of her brain, as well as getting good data on where to stop resecting. The last thing they want to do is go in to resect part of her brain and it not be enough to be effective in stopping her seizures.

While we wait to see how effective the VNS and new seizure med will be, the doctors have begun preparing us for the real possibility of a hemispherotomy – disconnecting the right hemisphere of Maggie’s brain. We don’t know if that will be weeks, months, or years away, but it is becoming more and more clear that this is likely where things will end up, as we have exhausted all other options known to us and Maggie’s doctors. Much of this depends on how the new drug works, how helpful the VNS is, if we can keep Maggie out of the hospital, and if they can get more solid info from the inter ictal SPECT test for a possible resection. The doctors are not hopeful about a possible resection, though. There is a lot more risk of something going wrong during the resection, which would cause much more damage and no benefit, than a hemispherotomy would.

Once we get home and recover from this past month, we’ll begin the process of seeking second opinions. We’ll also be talking with parents of kids who have had hemispherotomy’s, praying for Jesus to return quickly, and ensuring that we have not left a single bridge untraveled. 

We can’t wait to return home to our kids, wonderful friends, and church family. We had a good visit from PJ Mendickie last night, bringing us a welcome hug from home and  a much needed financial gift from their Sunday School community, Jars of Clay. Thank you! We also enjoyed some awesome Vietnamese food together. Thank you to everyone for your faithful prayers for our family and Maggie. They were effective and God used them for His Purposes.

I’ll post another update when her VNS surgery is set and we have a firmer date on when we’ll return home.

Physical, Speech, Occupational, and Music Therapy are huge parts of Maggie’s day, helping her to get strong again. They’ve been working with Maggie since last week, and it will continue until she is released. Therapy has been, and will continue to be, a big part of Maggie’s treatment once we return home.

Getting stretched and listening to music

Playing basketball

Maggie listening to Matthew Smith / Indelible Grace

Listening to music with the music therapist

Maggie took a walk around the garden today, making significant improvement each day. The second spect scan was done today, but it will likely be a day or two before we get the official results. Meanwhile, we are moving forward with the vagus nerve stimulator implant later this week / first of next week. The vagus nerve stimulator is the next step that has to be tried, as well as offering the least risk. We’ll learn more about remaining options after we get the SPECT results in the next several days.

Maggie has only had two seizures today. We are anticipating coming home the first of next week.

Pictures are worth…..

The scan is done, and now we wait for the results. During the scan, Maggie was the stillest we have seen her in a month. She has not been seizure free for this amount of time ( outside of the coma ) over the past month, and it began to happen exactly at the point we needed it to – last night through this morning. It is amazing to see, and a real testament to the people praying for her. Thanks be to God.

Here is Maggie reading many of the cards that have been sent to her.

Maggie has not had a seizure since yesterday afternoon. More importantly, she has not had any this morning. Radiology came in about an hour ago and injected Maggie with the nuclear isotope, and will bring her down for the scan in about 30 minutes. The doctors hope to get some preliminary results later this afternoon.

We played several of the videos you all have created, including this one from the LaRoy’s, and they proved to be great medicine. You guys are the best. Thank you for bringing laughter into Maggie’s room.

Meanwhile, Lanie is applying tattoo’s to everyone, and threatening to apply some to the nurses.  They are running in fear for their life. Lanie is in dire need of church discipline.