Progress

I think it’s time for an update. Last week was mostly uneventful after her 2 Week Post-Op checkup Monday at Duke. Her surgeon got to see the incision for the first time since we were inpatient and he agreed with the ER’s assessment that it looked good enough not to need to go back in to clean it up. He wanted us to finish her 5 day course of antibiotics and just keep it clean and see what happened from there. 

 

Thankfully it is looking better now. There is still a scab where the previous leakage had occurred but it looks like its healing everywhere now. As it has dried up, she has seemed to be less bothered by it and isn’t paying quite as much attention to it. She is fast and strong so it’s tough to keep her from messing with it if she tries. 

 

Last week was difficult as we began to see the re-emergence of seizures. They are not nearly as bad as any of her seizure types before. But of course, we’d have loved for them to stop altogether. This was not a surgery that we expected to cure her of her epilepsy, so we always thought they’d come back at some point. The fact that they are as mild as they are is extremely encouraging. If they stay this way, her quality if life will have been vastly improved by the surgery by reducing her risk of injury during her seizures. Right now they aren’t causing her to fall down at all. We hope and pray it stays that way. 

 

We are slowly getting to see what post-surgery Maddie is like. She is smiley and sweet as always. But some days she’s doing a lot of pinching and hair-pulling. And having a sneaky little grin on when she does it. She does it to herself at times too and we have to work hard to protect her incision when she’s in that mode. It’s definitely a great way to get attention and she’s figured that out. Typically ignoring would work but that’s tough to do when her incision is her target. 

 

Some days (like today) she is extremely whiny and irritable. She will have her good smiley moments, but then be in tears within seconds. Certain transitions set her off…..like the change of a song or scene on Sesame Street. Or the final credits rolling on anything. Or if you change the app or her iPad before she is ready. She can usually quickly recover, but these emotional outbursts are really uncharacteristic for her. She is keeping me on my toes. 

 

She likes the iPad a lot these days and no longer loves her books the way she once did. She also is back to throwing everything (toys, books) but she can direct where she throws stuff pretty well and she’s following directions at times too. 

 

Her verbal skills are re-emerging as well, but we can already see that they are better when she isn’t seizure-y so we really hope that the seizures don’t increase or intensify much. We’d really love to have the opportunity to work on her communication. She has so much language in there, it’s just tough to get out when she’s seizing. She has already shown some interesting improvements in using her language functionally since surgery. A flash card animal app that she really enjoys often freezes up and goes blank when she presses it too quickly. I asked her to say “mama” instead of whining or getting frustrated when it happens. And she did it twice today without me prompting it! She also threw it more than two times when it happened. Luckily we have a virtually indestructible case. 

 

There is so much going on that its really hard to keep up with. The emotional stuff can make the days really challenging even with all the good stuff. As a seizure mom, when she suddenly cries a lot over insignificant stuff, I tend to worry that a big seizure is looming on the horizon. In the past, as her big tonic seizures initially presented, she would have episodes of crying with no clear cause for a period sometimes an hour or more before a “big one” happened. So hopefully it’s all just adjustment stuff for her, meaning that her brain is adjusting to this new way of life with a lot less frequent seizures. During the one brief stint of time without seizures a few years ago, she had some serious emotional and behavioral quirks as the seizures stopped. So I’m hoping that this uneasiness she feels is mostly that and not big scary seizures just around the corner. 

 

She is walking like a little pro now. She tears around our house trying to get to all the “new” things she has found that she likes to label. We’ve lived here just since mid-April, and before surgery, I’d say Maddie knew where her playrooms were and where her bedroom and bathroom were, but beyond that, the house wasn’t really interesting to her. She certainly hasn’t paid much attention to the pictures on the walls or what she could see from individual windows. She still wears her harness because the house is almost all slick new hardwoods and I just still don’t feel confident in her walking or that a drop seizure isn’t lurking. But I hold it loosely and she completely supports herself now as she practically runs from room to room, naming items or people in the photos, asking to be picked up to touch things or see herself in mirrors. 

 

Her behavior is very much like the two months 2.5 years ago where the seizures stopped. It really is neat to see that because it means that when you strip all the seizures away, there is a curious energetic little girl under all these meds that wants to be able to interact with her environment. On the flip side, it also means we really haven’t made many gains in those 2.5 years. But how could she have with seizures all day long? So I am not worried about that. I just hope this period lasts and that we can get her feeling more comfortable emotionally so that she isn’t so frantic. So that we can really make some good progress. 

 

There is something kind of funny about all of this which could become a really great problem to have in the very near future. We just bought this house. It’s huge and beautiful and we mainly did it to try to make the best of a tough few years in Raleigh job-wise for Brandon and because Maddie and I had been so house-bound for so long. I wanted to splurge and really buy a place we could enjoy being “stuck in” all day. Because Brandon is active duty Marine Corps, every home is temporary, and so I just picked something that made sense for us for the next couple of years. It NEVER dawned on me that while we lived here Maddie might be able to walk around independently. We will have one heck of a time child-proofing this place if things progress to that point! Like I said though, that’s a great problem to have. Ha. I laugh at myself on that though. I considered that we’d need all this space to host family who’d come to help around surgery time if we chose that option. It just didn’t really occur to me that the surgery might be as successful as it has been so far. Long may it last. 

 

In the future, updates will likely be more infrequent. I finally let my mom leave a few days ago. It makes things a bit trickier since we still aren’t leaving Maddie alone ever yet. Which meant today I couldn’t shower until the babysitter got here midday. So I get to lounge around in pajamas more. It will hopefully be much easier soon, as I feel like her incision is just days away from being closed enough to leave her alone briefly. If it remains tough for awhile, I’ll ask mom to come back so that I can bathe and cook again. But for now we will keep hoping for improvement everyday as we get used to this new normal. 

 

Love to everyone,

Liz, Brandon, and Maddie

Today

This is how we feel about being back home and not in the hospital tonight!

 

This was a day that started out in a way we weren’t sure we were really emotionally prepared for again. Surgery is scary. We packed and headed to the hospital knowing we’d do what we had to do. But to be told “all is well, go home, follow up with your Dr tomorrow” was just amazing. Such a relief.

 

And the day just got better and better as it went on. Some of Maddie’s behaviors that we have been worried about were reduced today. And her speech improved. Not back to where it was, but by leaps and bounds over yesterday and the days before. And she has been a little giggle box. Lots of smiling, laughing, giving us kisses.

 

So today we are simply thankful.

Love to everyone,

Liz, Brandon, and Maddie

Another interesting morning

This little girl likes to keep us guessing. But I think it’s good news today at least…..we have been at the ER all morning and they are sending us back home. They think her incision looks pretty decent. And her blood counts show no sign of infection. And she’s acting like herself. So they think we should try a different protocol for dressing it, we’ll continue her antibiotics, and we’ll follow up with her surgeon. They just can’t justify re-opening the incision when it looks like it does today. So we are extremely relieved and we hope that the drainage stops on its own soon so that there’s no longer any question as to what is the best course of action. 

 

Thanks for all of your prayers and positive thoughts. Hopefully she’ll start needing them less soon!

 

Going back in

Well folks we’d love you to keep the prayers up. We’ll be heading into the ER in the morning knowing that the plan is for them to take her back in the OR and clean out inside. Not sure if its infected or not yet. Despite strong antibiotics for 48 hours, the incision continues to drain.  So we’ll be putting our princess into someone else’s hands again tomorrow in hopes that they can fix this. 

 

Ups and Downs

We have had a busy couple of days since I last updated.

Wednesday night, the area in Maddie’s scalp that had previously felt a bit squishy instead felt a little more taut. I had been told to watch for that but wasn’t sure how serious of an issue it was. Luckily, by the middle of the night her surgeon replied to my email that it didn’t mean a middle of the night ER visit. We did, however, end up in the ER the next day to have it checked out because the clinic at Duke couldn’t fit us in. At Duke, they felt it was curious, but after more consulting with her surgeon by phone and various other doctors, it was decided that we should just watch it and it would likely go down on its own. They did also warn me that her incision might open up a little and that it would escape as drainage. So while I was prepared for it, I wasn’t really excited to see it when her incision began draining right at the end of normal business hours yesterday when it gets harder to get seen or get a *quick* return phone call or email. Luckily her surgeon again got back to me with reassurance that it still looked ok (after seeing a photo) and with guidance as to how to clean and dress it to protect it. He also had us start her on an antibiotic today to prevent any type of infection.

 

Otherwise, things are pretty similar. She is sleeping better, which is a huge plus, and she is calmer than when she was clearly hyped up by the steroids. Seizures are still staying away while she is awake so we are thrilled with that. She has some interesting new behaviors which we are hoping pass soon. They have changed a bit each day but I’m not really sure if I’d say they were getting better or worse. She is smiling and giggling a ton. She hasn’t had to be on any meds for pain or nausea since Tuesday. Her walking has gotten better each day and I’d even venture to say that her balance may be better than before surgery. Although she has talked plenty since surgery, she has not said words in a few days. Words have all been replaced with one syllable that she uses as a response for questions and intermittently all day. It varies a bit, but we aren’t hearing any of her normal approximations.

 

So there have been some ups and some downs over the last few days, but we are just trying to manage the big stuff and give her time to heal before we push her hard on the small stuff. I am hoping there is nothing else to report about until after her follow up with the Neurosurgeon Monday. We’d really love your prayers that she stays free of infection as this new opening in her incision heals.

 

Thanks for checking in with us! I’d share a pic but the only ones I’ve taken the last few days are of her incision. Oops, I’ll try to do better!

 

Love to everyone!

8 days out from surgery

It’s been harder to update from home because Maddie is getting her energy back and naps are not as frequent. In fact, I’ve been napping when she does as she isn’t sleeping through the night right now. Tonight while making dinner, my mom encouraged me to update all of you kind people who are keeping up with her progress. We were discussing what I should say about how things are going and how I am a little uncomfortable about talking about some of it. Things are pretty tough right now. But I just feel so thankful and blessed for how things went last week and for so many other aspects of her surgery and recovery, that it feels funny to harp on the smaller stuff. I just don’t want it to sound like I’m complaining.

I guess the best way to frame this update is to say that even when brain surgery goes as well as it can possibly go, it’s still brain surgery. Which is a big deal. It is so very hard on young kids. Especially if they don’t understand what they’ve been through and why. And so it is also hard on the family. Because it’s tough to see your child suffer. And it’s hard not to get sleep while you’re staying up vigilant when your child won’t sleep because her incision itches and you cannot under any circumstances allow said child to scratch open that incision.

Our news is varied. On the one hand, Maddie is still affected by the steroids which she was on until Sunday. She’s uncomfortable and has some unusual behaviors because of them. These behaviors can be mistaken for seizure-like motions at times and that is hard on my heart. I know to expect seizures and changes to her seizures, but when I see something new and suspicious it feels devastating. Luckily these behaviors are changing very quickly. The phases don’t last long and hopefully by tomorrow the scariest one from today will be gone.

On a side note, I was comparing notes today with another seizure mama whose daughter, Kate,  had a Corpus Callosotomy 5 days before Maddie. Our girls are doing some of the same crazy things: Fake burping all day, lots of head turning, as if saying No, higher respiratory rate from the steroids which seemed to make Maddie pretend to hyperventilate purposefully on and off throughout the day. I’m sorry she’s dealing with the same craziness but its comforting to know we aren’t alone in this.

Back to the news, Maddie is improving daily in becoming the Maddie we know and cherish again. She’s smilier everyday. She’s more huggy and kissy too. She is making better eye contact and is calmer. She is also getting stronger everyday.

But she is still not really interested in her toys and keeping her occupied and from attempting to scratch her incision can be really trying. I even had to order elbow immobilizers today so that she can’t bend her arms to reach her incision. I hope not to have to use them, but when her urge to scratch is keeping us both up from 3 am on……sometimes you have to try something a bit weird. Most likely she’ll have moved on from wanting to scratch by the time the immobilizers arrive. Which would be just great.

The top of her head is soft from there being fluid and swelling between the scalp and the craniotomy site. It’s weird to kiss the top of your child’s head and it feel mushy. I know it will pass but that feels scary to me. There is never a moment where an adult (my mom, Brandon, or I) do not have complete control of her mobility. She isn’t walking well yet, though we are practicing. This means right now she sleeps with me all night so that I make sure not to miss her trying to scratch. I bathe with her so as to make sure she doesn’t tip over and bonk anywhere that’s important and tender. She’s riding on one of our hips most of the day and we always have a hand on her even in her amazing padded playroom.

So it is exhausting. I’m so thankful my mom can be here to help during this. Obviously Brandon has to go to work during the day so it’s really helpful to have someone else here who can help me with all of it. We’ve also had some wonderful people prepare us meals or send gift cards or yummy fruit and gifts and flowers and balloons. All of that makes it a lot easier on us and we appreciate all of the kind gestures.

I guess the most important part of our news is how the seizures have changed. That is of course what makes it all worth it…..at least right now it certainly feels worth it. Again, I hate saying anything about it because I know we are a long way from knowing the end result of this surgery seizure-wise. But right now things are very good. In the first two days post surgery, we saw some strong myoclonic seizures while she was awake. They occurred in singles, rather than clusters. But they were strong enough that she’d likely have been knocked down if she’d been standing. But two days post surgery was the last time we saw any of those. She was also having eye deviation seizures in the hospital, but those stopped on Thursday and I haven’t really seen them since. She has not had a single big tonic seizure since the surgery still. The only seizures I’m definitely seeing right now are very mild clusters of myoclonics while she is falling asleep. Of course I’d prefer to see none at all, but to see no seizures while she is awake for days in a row really feels like a miracle. I would have considered the surgery a success if it reduced her daily seizures by 50% and eliminated the most dangerous drops. To be where we are is really fantastic and amazing and unexpected. So I’d love it if you’d continue to pray for her healing and that the surgery continues to provide her with great seizure control. She has a long way to go in her healing and it will be a while before we see how truly successful the surgery has been for her.

For now, we are trying to get her through the tough healing part so that she can enjoy her days which will hopefully be much less seizure-filled.

Thanks again for checking in our amazing little girl!

The surgery in pics

We didn’t take a ton of photos, but here are the few we have:

 

Killing time during surgery delays

 

Back in Pre-Op

 

Mama got to wear weird OR scrubs to take me back into the OR

 

Dada and I asleep in the PICU the night after surgery

 

We got moved to a regular room, but this still isn’t much fun

 

Sleeping on my mama….here’s a view of my incision

 

 

Here’s another view….it’s kind of like a fancy headband

 

I didn’t really want to smile for the camera, but having a bath at home really improved my mood

 

 

 

 

 

 

 

 

Home

We made it home. And we hope this is the beginning of something amazing. Our release however was not because everything is going easily but reflects the fact that our team knows we know how to handle Maddie’s needs and that the hospital is a really tough place for little kids. 

 

At around 5 pm yesterday, Maddie woke from sleep and it was clear that she had turned a corner in some respects. She could hold up her head much more easily. She smiled. She was making normal Maddie faces and responding the way she should to us. 

 

She was also very clearly under the effects of steroids. They use them at Duke post-surgery to help reduce swelling of the brain.  Steroids make her pretty uncomfortable. Unless you’ve seen a young non-verbal child on steroids, it’s a little hard to explain, but it’s like she just doesn’t know what to do to make herself feel right. Nothing pleases her, she wants to do something else, try something else, but then when she does, it’s no good and she just needs to return to the safety of cuddling. One positive of being under the influence of steroids is that it increases appetite usually. And she finally decided she felt like eating more than gummy bears. And she did not vomit. 

 

It was a longish night with not as much sleep (steroids make it hard to settle down) and lots of visits from residents. I had asked to have a consult to talk about reducing the steroids once it was clear she was about to come unglued. Hospitals are never fun but they are particularly difficult for kids on steroids and so I knew then we needed to step up efforts to get us home.

 

The residents agreed to reduce the steroids and that she was making amazing progress (holding up her head, looking more alert and like Maddie). And after seeing her awake and responsive at rounds this morning, her doctor said that if we were comfortable and could get her to drink, we could take her home. 

 

So the drinking part is going to be tough. She’s fighting liquids right now. But she did drink a little bit willingly once they stopped her maintenance IV fluids this morning, so I know it will come. But until she picks it up on her own, I’ll likely be forcing fluids by syringe. Better at home than at the hospital though. And so we are here. 

 

The drive was tough; we could tell she was a bit nauseous. When we got home, she seemed relieved to be out of the car, but had no desire to play and just went right back to sleep. But we’re ok with that. We’ve seen her pattern now and she seems to want to sleep away a lot of the day only to get alert and awake just before her old bedtime. As long as she keeps progressing from day to day, that’s ok with us. She can have as much rest as she needs. And if our sleep schedule gets a bit off for awhile we’ll deal with it. 

 

And in other important news, seizures are still dramatically reduced. We are so thrilled to see this. In the past, steroids have helped to reduce her seizures. And since she’s been on them at pretty decent doses since the surgery, we are a little afraid that they are playing a part in the great seizure control. We will have weaned her off of them by Sunday though. And so we’ll be watching carefully to see if things deteriorate as she comes off them. We certainly hope and pray that is not the case. 

 

We have not seen a single one of her biggest tonic seizures since the surgery. She was having 3-4 a day before it. That alone is amazing. We would be so blessed and thankful if this surgery got rid of those scary and dangerous seizures for good. Even a break of a few days from them feels like a huge win. 

 

Thanks again for all your prayers, positive thoughts, and support during this crazy week. I’ll continue to update as things change here. I also have some pics to post when I get more time. 

 

Love to everyone,

Liz, Brandon, and Maddie

Breaking out!

I’ll write more later when it’s less crazy, but we are getting discharged. Woohoo!

 

 

Day 4!

Today IS a better day! Yesterday we didn’t have much improvement in anything until about 5 pm so it was a little rough to watch her continue to be so lethargic. It was enough for us to feel like she might be turning a corner. But it was very short lived and then we had a pretty good night’s sleep again. 

 

This morning she has shown clear signs of improvement! She has been moving around a lot more, holding her head up better on her own and bearing weight on her legs multiple times. She is smiling a little and has been smiling at herself in the mirror (which is something she normally loves to do). She is still very weak, and seems to be a bit frustrated, but considering everything she’s been through, I feel like she is making good progress. 

 

Her incision looks better than expected. Yesterday they removed her head wrap and we were all pleased to see how even and neat the very large incision is. Dr Grant really is fantastic. 

 

As I was typing this, she just awoke again and when I offered food she said, “mmmmm”. That was a normal response for her pre-surgery, and it’s something we hadn’t heard until just now. Another great sign. 

 

The most exciting change is the lack of seizures. Again, we know that this change could be short-lived so we are trying not to get our hopes up yet. But as of right now she hasn’t had any of her big seizures since the surgery. And she has only had a handful of smaller ones. So we pray this continues to be the case. 

 

I’d like to thank all of y’all that have been praying so fervently for our little girl. I know they are being heard and we are seeing proof of it here. We are also so thankful to Dr Grant and his team. We are extremely hopeful that this is what we have been waiting for…….

 

Our thanks and love to everyone,

Liz, Brandon, and Maddie