Almost 3 Months Since Emmalin’s Brian Surgery

Well, it’s been almost 3 months since Emmalin has had her brain surgery. A LOT has happened since my last post (sorry about that). On May 31st, we had to rush Emmalin back to the St. Louis Children’s Hospital (SLCH) because her incision got infected. We were lucky that the infection was just on the surface. From the time that Emmalin was admitted, she was put on 3 different antibiotics (through an IV) rotating every 6 hours. After 24 hours, it was dropped to 2 antibiotics. We stayed 6 nights in the hospital. When Emmalin was released, she was sent home with a PICC line so that we could continue the 2 antibiotics every 8 hours. After almost 2 weeks of having a PICC line, it was finally pulled and Emmalin was put on oral antibiotics for another 2 weeks (actually a little over 2 weeks). FINALLY on July 4th, Emmalin was able to have her first day without being given an antibiotic in over a month!

The entire month of June was a rollercoaster physically, mentally, and emotionally. Also during that time we made SEVERAL trips to St. Louis (pretty much weekly for a while), which can also be pretty exhausting on the pocket book! On Friday, July 13th, Emmalin was FINALLY released to be able to get her incision wet in the bathtub and to pull her hair back over her incision. These 2 things may not seem like a very big deal, but they were/are HUGE!! As of today, we are actually not expected back to St. Louis for an ENTIRE MONTH!!! We are SO excited!! The longest we have been away from SLCH since May 31st has been 2 weeks. I don’t think we are going to know what to do being away for that long (lol). And actually, we won’t have to go to an appointment regarding her brain surgery until October, but of course Emmalin has 6 other specialists at the SLCH and so we stay pretty busy with them also.

As far as Emmalin’s progress goes since her brain surgery:

-She DEFINITELY has continued to find ways to make it known on what she doesn’t like. (And we are loving every minute of it!)

-She still continues to move around CONSTANTLY!!

-Another really exciting thing is that now Emmalin acknowledges when someone is paying attention to her. No she doesn’t look them in the eye (she’s blind) but she shows them in some way that she knows she’s being talked to. It’s AMAZING!!

-Unfortunately since Emmalin hasn’t been able to do therapy since the beginning of April, Emmalin has lost significant “ground” with her head and trunk control. Honestly, she doesn’t have much head or trunk control at this moment, but we are hoping she will start gaining it back very soon!

             Seizure wise:

-She is still having A LOT of seizures each day. It still varies each day, but if I had to give an average I would say she is having around 8-10 a day (sometimes more and sometimes less). This is the one area that the doctors were hoping would not be this high (after the surgery), but it seems Emmalin’s seizures are still finding a way to make it to the surface.

-The time of each seizure is still averaging around a minute and a half. This is HUGE for us (before surgery they were around 4-5+ minutes). I thank God every night that her seizures are still so short!! Yes, one and a half minutes is short for us!!

-Before Emmalin’s surgery, after Emmalin had a seizure 98% of the time she would go to sleep afterwards. Now after Emmalin has a seizure about 90%-95% of the time Emmalin is still awake and able to function. This is another area we are SO grateful for!!!

We have an EEG scheduled in October. This will be our first opportunity to see what Emmalin’s seizure activity looks like in her brain after her surgery.

Although the doctors don’t consider this to be a success as far as the seizures go, we (me and Jarrad) feel that this surgery has been a HUGE success in A LOT of ways!!

                                                                   GOD IS GOOD!

2 Week Check-Up

Emmalin and I just got back from her 2 week check up at the St. Louis Children's Hospital.  Dr. Lembrick said her incision looks great!  She can start therapy back again (slowly) and she can now have a regular bath (I am SO excited about that)!  He said her stitches should start coming out slowly (they are the dissolvable ones) and that he would like to see us back in a couple of months.  We will now follow up with Emmalin's neurologist in 4-6 weeks and start talking about medication adjustments.

As far as Emmalin's progress 2 weeks after surgery, she's still doing AMAZING!!
Seizures:  She's still having some, but the intensity and length have decreased dramatically!!  Every once in a while she still has a "rough seizure day", but it is still NOTHING compared to what it was like before the surgery!  At this point, some days she will have none, and then others she will have some that are seconds.  Her longest seizure, here lately, is about 1.5 minutes.  Before the surgery she was always pushing 3-5 minutes when she would have a seizure.

Emmalin still seems to be aware of a little more around her, and she definitely still has more of an opinion about what she DOESN'T like. She is also still talking a little more and moving all the time!!! 
At this point, Jarrad and I are still very grateful that we chose for Emmalin to have the surgery!!  I'm glad it's over and that Emmalin is recovering so quickly!!

                                                               God is SO good!!

Since We've Been Home

Literally within 9 hours of my last post, Emmalin's neurosurgeon came in and said that Emmalin was showing all the signs he needed to see to be able to release her.  Her swelling in her right eye was down 75%, so by 1:30 that afternoon, we were on our way back home (and before we left Em's eye swelling was almost completely gone)!  No one, including me and Jarrad expected to go home so quickly.  I tell you what, Emmalin just continues to blow us away on how resilient she truly is throughout all of this stuff!  She is by far toughest person I have ever known!!

Since we have been home, Emmalin is still doing great!  Her right eye still swells sometimes, but we have been told that her eye swelling could happen on and off throughout the next 2 weeks.  As long as her incision isn't swelling or draining, we are good to go!

As far as how her seizures have been, so far they are still there, but the intensity has decreased and she isn't having them as often.  The doctors have told us that her brain may still have some swelling at this point and things inside her head are still trying to "adjust".  Because of all of this, we will not know for a month on what the surgery will officially do for Emmalin. 

When it comes to everything else, Emmalin seems to definitely be talking more.  Yes, she is still non-verbal so it isn't "mama" or "dada", but it's still sounds.  Those sounds are, by far, the most AMAZING sounds I have heard in a REALLY long time!!

Also the past couple of days, Emmalin is moving ALL THE TIME!!!  I am excited to get her clearance from the doctor so I can start working with her in the floor on rolling (and other things) again!!! 

The last thing I have noticed so far is that Emmalin has more of an opinion on what she doesn't want/like.  It is SO cute!!  She has had a little bit of an opinion before, but it's just a little stronger now and more often.  I LOVE IT!!!

As I said before, the doctors say it is too soon to be able to say exactly what the surgery will "officially" do for her, but all of the things that we are seeing are very good "signs" that the surgery was very successful!

More Pictures Of Emmalin While She Was In The Hospital

This is Emmalin in the hospital 2 weeks before her surgery during her 24 hour EEG

Emmalin in the PICU with her Uncle Corey and Aunt Jessica

Emmalin Friday, 48 hours after surgery.

Emmalin sleeping Saturday (the day we got to come home)

Closer view of Emmalin sleeping the day we got to come home :)

Emmalin waiting to get clearance to go home :)

On our way home!!!

24 and 36 Hours After Surgery

Yesterday we started off the day in the PICU.  Emmalin had a pretty good night and had very minimal swelling in her face by the time she woke up.  She had to do another sedated MRI at 8:30am and then we returned to the PICU.  When she got back, Emmalin's right eye had began to swell.  We had been told that this could have been one of the side effects from the surgery.  It was nothing that was "serious" but that if it happened, her eye would probably swell completely shut for most of a day before it started to get better.  So just as we had been told, as the day progressed, Emmalin's swelling in her eye continued to get worse.
Later that day we got the results from the MRI confirming that they were able to cut through the entire thing (for her corpus callosotomy surgery) and that she showed NO signs of stroke :)
We were moved from the PICU to the 12th floor around 7:00pm, got settled in and went to bed.
Seizure wise, Emmalin did have a couple of seizures.  We do feel that they were VERY minimal compared to before her surgery.  Emmalin's neurosurgeon had said that her seizures may continue to decrease over the next month, but nothing is guaranteed.


Emmalin had an amazing night last night, but by this morning, Emmalin's eye was indeed swollen shut.   Today was the day that we got to add back in all her eating and start moving her out of her bed a little.  She has had several seizures today (still smaller than before).  As of this moment, she seems to not be feeling the best and she has started running a little bit of a temperature again :(  On a positive note, her swelling in her eye does seem to be starting to go down a little bit :)

So looking at the "over all picture" of Emmalin's recovery, Emmalin is still doing incredibly well!  She continues to blow us away by how tough and resilient she is!! 

                                                                 God Is Good

Some pictures before and after Emmalin's brain surgery (corpus callosotomy)

I wanted to post some pictures about how Emmalin is doing and what the progression has been like so far on this crazy "journey".  We feel very blessed that Emmalin is doing SO well and we hope and pray to continue to move in this direction so she can go home soon!!

Emmalin before surgery still snoozing :)

One view of the incision

Our beautiful girl hours after sugery while in the PICU

A better view of the incision

Emmalin in the PICU after surgery

Our family after surgery in the PICU

Daddy (AKA Jarrad) and Emmalin in the PICU

Day #2 after her surgery.  Her eye is swollen shut :(

Surgery Day

This has been one of the scariest days of my life!!  Today Jarrad and I took Emmalin to the St. Louis Children's Hospital to have a Corpus Callosotomy done (that's a brain surgery). This is something that NO parent should have to do with their children and I hope that we NEVER have to repeat it!!!  Sitting in a room knowing that there is a doctor, just down the hall, who is cutting on our child's BRAIN!!!  Let me just say, I'm SO glad the surgery is over!!! 

Emmalin was in a little pain today, but slept most of it because of all the medications they have given her through her iv.  Her incision looks AMAZING!!  Also we have A LOT of family that has come up to support our little family and we are incredibly grateful for all of their support!!

It is now midnight and Emmalin is resting very peacefully!  So far she has had a wonderful night!  She has a little bit of swelling in her face and we think that part will get a little worse tomorrow. I have been told that tomorrow and tomorrow night could be pretty hard for her, but I guess we will just have to wait and see.  I do know that tomorrow Emmalin will have a follow-up MRI at 8:30am.  We have been told that they do this follow-up MRI to make sure that they "got the whole thing completely cut" and to confirm if she has or has not a stroke.  We will then see our neurosurgeon at some point in the afternoon.  He will of course see how Emmalin is doing and then give us the results of the MRI. Jarrad and I have ABSOLUTELY NO REASON to believe that Emmalin has had a stroke, but they have to do the MRI because it is protocol. 

I need to get some sleep tonight, so this is all for now.  God is AMAZING!!  It is because of HIM and only because of HIM that we were able to make it through today!!