Home Sweet Home

This is late, but I wanted to share the exciting news... Sophia was discharged today!!! I have been busy taking care of her, doing laundry and cooking. Making a home cooked meal was wonderful! (Not that I didn't appreciate and enjoy the food given to me today. Thanks, Bruce and Angela for the pizza. It was a delicious late lunch.) Anyway, Sophia is doing well. Her right eye is horribly swollen since she has been sleeping exclusively on her right side and all of the fluids pool there. But the pain is under control with just oral meds and she has been up (with support) and even watched an entire movie while sitting upright. She was such a trooper today. I have a couple of stories, but I'm too tired tonight to share.

Sophia loved all of the cards, pictures, and other gifts that were given to her. She really appreciated her room being decorated. She wanted me to take pictures so she could remember it. The pictures are terrible, but you can get the idea. Thanks again to everyone for helping to brighten her days in the hospital.

No News is Good News

Sophia had a difficult time coming out of the anesthesia yesterday. She was very emotional and wanted me to hold her had and give her lots of hugs. The nurse had her do deep breathing and she was a champ! It helped a lot. They were very proactive in treating the nausea this time and they also knew which med didn't help control it, so she experienced very little nausea and only vomited once today (and not at all yesterday.) Two of my good friends stopped by yesterday evening and I forgot to take pictures. Sophia was completely out of it, so it may have been strange posing with her. :) Thanks Teresa for intuitively knowing that chocolate was what I needed. Thanks Caralee for doing me a favor. I got that stuff taken care of today, thanks to your help.

Today, it has been more difficult to stay on top of the pain. However, for the past few hours, she has been sleeping and complaining very little. Her catheter is gone and she has a drain to hopefully help manage the swelling. Her eyes are both rather swollen today in spite of the drain, but it doesn't seem to bother her since she is just sleeping. Nothing much to report today, just troubles connecting to the Internet and mostly holding Sophia's hand. My mom stopped by a couple of times today. Sophia's aunt (Gary's sister), her husband and their little one visited. I know Sophia appreciated it in spite of being so out of it. Jackson was trying his best to get in bed with Sophia and play with her. It was adorable!

                                                      Sophia, Betsy, Casey and Jackson

They waited all day for a bed on the 14th floor to open up so they could move Sophia, but it's still full so she will be spending another night here. Good thing no one swiped the recliner, or Gary would have to sleep upright on a chair! (Did I mention earlier that there is only one recliner on the whole floor? And it's in Sophia's room. It is much sought after.) I haven't heard, but I will assume the plan is still to discharge Sophia tomorrow. I'm ready to be home so I can't imagine how Sophia feels!

Just got done talking to Dr. McDonald and everything went well. He said that she was fine throughout the procedure, vitals were good, didn't lose much blood, etc. He said that her brain looked good aside from the area that was removed. Possible side affects of the temporal lobe-ectomy (the name on the consent forms was much longer and I do not remember it) are double vision (this would go away) or... what did he call it... It's a spot in her vision that she would only notice if she is looking up and to the right. They sometimes refer to it as a "pie in the sky" because the gap in the field of vision is wedge-shaped. If she has this, it won't go away, but would not affect her quality of life much. (She would only notice it when playing something like softball and looking way up and to the right to catch the ball.) Lastly, because I know you are all wondering as much as I was, I verified with the doc that he did, in fact, play Lady Gaga and also did a dance. He said this made Sophia laugh. :) I really wish I could have been there for that!

She will likely be here for 1-2 days. Tonight will be in the ICU again and if she feels better but still can't go home they will probably move her to the 14th floor (neurology.) I like those rooms better (that's where we've stayed during her tests) but she has definitely received excellent care in the ICU. She really only needs to stay in the hospital until her pain is under control. (I can't administer Morphine to treat breakthrough pain.)

My cousin Warren (an orthopaedic surgeon in this hospital, the best, in case you are looking :)) just saw me in the waiting area and chatted for a bit. Again, it's always so nice to see people who care about you. I'm going to go up to the ICU and see if Sophia is there. Here's hoping for less nausea the second time around!

Sophia is off to surgery. She seems quite nervous, but of course everyone is being really kind and upbeat so that helps. I really like the surgeon. Sophia asked, "Am I going to die?" He said, "Of course not, why would you think that?" Sophia: "Sometimes people die in surgery." Dr: "Not this kind." He then gave an impressive statistic about how many surgeries are performed in the U.S. every day. Sophia is impressed by statistics, so that helped. He went on to say that this time he would play Lady Gaga in the operating room and might even dance for her. They must have discussed music sometime for him to know Gaga is her favorite. (After the last surgery, he alluded to doing a dance, so I think he's serious about that.) It's nice having a surgeon with a goofy side. Gary said, "Sophia's used to that." Referring to himself, obviously. :)

I was thinking last night how thankful I am to have an ex-husband (former spouse, for a more PC term) that is so easy to get along with. I can't imagine how difficult it would be to have to share in something so emotional an intimate with someone who is jerky or belligerent. I have really great people in my life. Thank you to everyone for all of your kindness. I'm amazed at how powerful a text, email or comment can be. Thanks to all visitors and those offering help. Bruce and Angela, I know how stressful and crazy your life has been lately, so I'm really humbled by your consideration.

The volunteer in the waiting room just called to update me. She said they started the actual surgery, Sophia calmed down a bit (with a chuckle, I wonder if she was laying eggs again) and everything was going well. Oh, I forgot to mention that today in the waiting area, the TV option was only a step down from the election coverage on the scale of unbearable television. Live: New Kids on the N'Sync, or whatever the latest boy band is. Can't remember their name... Anyway, they are AWFUL! Somehow we saw them the other day on T.V. we (Sophia, Chris and I) were making fun of them. We only watched for a minute, but I pretty much had the song memorized after that. Well, guess what's running through my head right now? "Oh-oh-oh-oh oh-oh-oh-oh." (Repeat 3 times.) "Something something something something (pause) "And live while you're young!" OK, so I don't have the lyrics down, but the tune is STUCK. Anyway, I'm here at The Night Shift again while I wait. I'm going to put on headphones and try my best to purge this tune, but I'll keep in close touch.

More visitors & surgery tomorrow

I can't remember exactly what I wrote yesterday, but after consulting with the both doctors (epilleptolotist and neurosurgeon), Sophia will have a resection surgery to remove the locus of the seizures in her temporal lobe. This appears safe and will likely have no negative effects. It's hard to say how much those seizures affect her because she has them when she is asleep and she rarely knows she's had one. Also, she doesn't yell or scream beforehand (she does with the tonic-clonic seizures) and she makes little noise during the seizure so we usually don't know she's had/having one. So if these seizures end, Sophia probably won't notice she's having fewer seizures. We are thinking she may gain some processing speed and increase cognitive functioning if/when she is no longer having the frequent "spiking" activity that seems to come from the left temporal lobe. (I don't really understand what that is, so I'm not sure how to explain it. On an EEG the lines spike, but not to the point of an actual seizure.)

One of the best things that could come from this, and I don't know how likely it is, is that we would be able to decrease her meds. It's unclear how much the medications slow her down compared to the spiking activity. But without meds she has uncontrollable seizures, so that has not been an option. There is no way to separate those. Something interesting to me about the observation in the hospital when she had the temporal lobe seizure. Her oxygen levels dropped too low briefly. When I watch these seizures at home, it's scary because it looks and sounds like she is not getting enough air. Apparently, she's not. After the surgery, I think she may be less sleepy and require fewer naps if she's getting enough oxygen every night. I think I've rambled a bit, but that's how my brain is working right now.

We had more visitors on Saturday after I sent a post. It was great because there was a steady stream all day and that really helped Sophia stay upbeat and entertained. Yesterday we didn't have visitors and that was okay. I think we both felt like being alone. Today, my mom, sister, dad and Gary's dad all visited. It was great. Sophia looks and feels really good today. You can see in the pictures that she looks like herself again.

 James, Rebecca & Soph

Tori with Sophia on Saturday

Courtney, Darrel & Sophia on Saturday

Gary has a picture of her incision with accompanying staples. It's really interesting, but we decided it is probably too graphic for a lot of people, so I won't post it. She has all of her hair and it will cover the incision, so it won't be noticeable unless her hair recedes or falls out someday. :)

Grandma (my mom), Stephanie and Sophia today

Grandpa (my dad) and Sophia today

Grandpa (Gary's dad) and Soph today

Courtney and Darrel also stopped by again today. They live really close and brought her some DVDs today.

OK, so I probably shouldn't tell this story because it might embarrass Sophia, but it's SO funny to me that I can't resist. So, the camera is aimed at Sophia's bed and all it shows is her in her bed. It is being recorded and she is also live streaming in the nurses' station. The nurses have come to the room a couple of times to ask Sophia to cover herself. (She likes to have her legs up and she tends to flash the camera.) :) Anyway, Sophia has been more careful to keep herself decent but apparently it wasn't soon enough for the nurses' station. Today I noticed that there is a Post-It note strategically placed on the screen. I started cracking up and am chuckling right now thinking about it. I told Sophia and she got a kick out of it too.

Well, her surgery is scheduled for tomorrow at 8:30 so hoping all goes well. I'm confident that it will.

Disappointment

Sophia had another seizure last night. The Mapping that has been going on narrows the area to indicate a more precise location of the locus of the seizures. She has 2 types of seizures and she had the 2nd type last night (partial complex). It's good that they got the information from that seizure. What they have found is that her tonic-clonic seizures come from her frontal lobe. Dr. Constantino had determined this was the case through previous testing and was very hopeful that this could safely be removed. One thing that can happen during the mapping, is the information obtained can show that the patient is not actually a good candidate for the resection surgery. Unfortunately, it looks like the locus of her tonic-clonic seizures is incredibly close to the motor area of her brain. That makes it extremely risky to perform a resection or other type of surgery due to possible (maybe probable) motor function loss. The partial-complex seizures come from her temporal lobe. If you observe her, these seizures look like they are not as severe because she is not jerking like the others. However, it is this type of seizure that is causing the very frequent (several times per minute) spiking in her brain. Meaning, she doesn't appear to be seizing, but there is activity going on that is negatively affecting her brain. The surgeon said today that he thinks this area can safely be removed, and further, there is evidence that this area of her brain is damaged with scar tissue and shrinkage so the right hemisphere of her brain has taken over those functions some time ago.

I really appreciate both doctors coming in on a Sunday to talk to us about this. Unfortunately, it is not what we expected, nor what we hoped would be the result of this ordeal. The surgeon talked to me in Sophia's room so she heard what he was saying. She had some misconceptions (she thought she might go deaf), so I figured it was best to be straight with her and explain what we know so far in a way that she can understand. She was very  upset when she heard she will probably still have seizures after this surgery. She cried, "I just want to be like everyone else," which is pretty much what I have been mourning since I got the news.

Excited about a seizure!

Gary called this morning and Sophia had just had a seizure! This is only the 2nd time we've been excited about that. (The 1st time was during an EEG test.) It was 1 min. long, so Sophia was really miserable afterward. The longest seizure she's had in ages has been about 30 seconds. Dr. Constantino told Gary that she got really good data from the seizure, so we are very pleased about that. She said after Sophia has another seizure, then we will go ahead and schedule the surgery.

Yesterday evening was rough. Sophia's catheter kept leaking so they eventually had to put in a new one. It was challenging for the nurse because they don't have children's sizes readily available, so they had to order from the ER. They couldn't get one as small as the one she already had, so that was difficult. Also, the youngest patient they've had in this unit is 17, so they are not used to working with small anatomy. Sophia was such a trooper and so very brave! Her nurse was outstanding, she's our favorite night nurse. Early this morning, Sophia woke up to a soaking bed. The nurse today (the same day nurse as yesterday, who is also fabulous) has decided that it's a positional thing. Meaning, unless the tube is in just the right position, it won't drain the way it's supposed to. So she checks it often to make sure it's draining properly. I really hope that is taken care of. Poor Sophia!

Gary spent the night at the hospital again and I slept at home and dreamed about Sophia. I slept solid for over 8 hours so I'm feeling great. Chris and I woke up to over a foot of snow. Our tree by the road lost a huge branch yesterday due to the heavy, wet snow. Somehow  it ended up in front of half of our driveway during the night. Chris will probably be tackling that with a chainsaw while I'm cozy hanging out with Sophia.

Sophia had visitors today and she was very happy about that. My dad was there. My sister and her husband (Valeries and Brandon) are in town from Logan and they came to visit. I know that really brightened up her day and made the time pass more quickly. We have had several people planning on visiting but can't make it due to illness. We appreciate the thoughtfulness and she will likely be here until Wed. or Thurs. of next week, so there may be still be time to recover and visit. She will be at home for a few weeks recovering and I'm sure that will get lonely and boring, so visits at home would be nice as well.

Burning Down the House

Gary put this on on facebook this morning. I had to copy and post it  for those of you who aren't fb frinds with him. Hilarious!:

When I arrived for the night shift last night I asked Sophia if she was ready to party. I then began singing "Burning down the House". Sophia said, "you're weird", and then rolled over and went to sleep. We both slept well last night.

Day 4 & no seizures yet

Gary says he and Sophia both slept well last night. I also slept better than I have in a long time. (Of course, I was home in a real bed, so that makes it easier.) Dr. Constantino (Sophia's epilleptologist) talked to Gary this morning and said that her brain is showing lots of "spikes" which means she is close to having a seizure. The Dr. removed Depakote from her morning med dose (1 of 3 of her meds), so I predict she will seize tonight, if not during the day when she dozes off.

Sophia is more herself today than she has been since the surgery. She is in less pain and much more awake. She has eaten more, played her new DS (thanks Gary!), and done a couple of word puzzles. We tried Animal Planet for a minute but it was showing animals having surgery. Sophia was not interested in watching that. :)

Thanks to my coworkers at RISE for the card. Sophia really likes the turtle in roller skates on the front. She wanted me to hang it under the TV where she can see it. Thanks Annie for delivering the card and snacks. It really means a lot to know that so many people are thinking about and caring for us. And thank you to my mom for stopping in during lunch and after work. (She works a an RN in the endoscopy unit on campus here.) I don't know why, but mom's seem to make everything better. Thanks Chris for the TLC. And thanks, as always, to Gary for taking the night shift. I don't know how he does that and is pleasant the next day. I would be GRUMPY.

Just waiting for a seizure, but since we have to wait until Tues. for the surgery, I'm sure it's just a matter of keeping Sophia happy and entertained until then.

Live: Sophia Larson

There is a camera recording the view of Sophia's bed and the monitor with data from all of the probes. The pictures aren't great but it kind of gives an idea of how much info. is being recorded. It's pretty cool to watch it in action.

 

 

The Monitor Screen

 

 

This is a closer look at the video data. It's a terrible photo, but the thing I like about it is that the lable is: "Live: Sophia Larson." Another cool thing is how when there are spikes, it automatically marks it so it will be easier to find.



Sophia Live

What a shiner!

Sophia woke up with what looks like a very swollen black eye. This is normal, but no one told Sophia or Gary that so they were both wondering what was going on this morning. Her nurse wants Sophia to give the surgeon a hard time when he stops in and ask him why he punched her in the eye during surgery. :) The swelling from the surgery site travels down and pools into the eye which can cause swelling or even look like a bruise. Gary spent the night at the hospital again (thank you Gary!) and there are no seizures to report. He said they both got some sleep, but she woke up about every 30 min. wanting water (good for Sophia, bad for Gary.)

Sophia has eaten a bit more today. She only wants soft foods b/c she says it's hard to chew. One of the nurses was explaining that the surgery can aggravate the TMJ and make it difficult or painful to chew. She wanted plain mashed potatoes so Gary asked someone for that. After some time, I went to the cafeteria to buy some. I braved the lunch crowds and stood in 2 lines for a 95 cent ice cream scoop full of potatoes. On my way back, in the ICU, I noticed there was a container of mashed potatoes with Sophia's name on it just sitting on the counter. :) The story ends well because her potatoes had gravy on them. Or in them. The gravy was stirred in so I'm wondering if they tried to hide it when they realized their mistake. They have no idea who they are dealing with. Sophia will notice a single speck of pepper in her mac and cheese.

I asked the nurse why they don't just skip a dose of meds (which always results in a seizure w/in 24 hours with Sophia) as opposed to just halving it. One reason (which I figured was why) is that they don't want some one's seizures to get out of control b/c then they have to wait until they are stabilized before they will do surgery. The other reason is because, in order to get accurate, clear readings, the seizures need to be spaced apart several hours (preferably 12 hours.) They want to be able to see the brain during a seizure but also what goes on after to the point of being stabilized again.

I was really preoccupied at work and stressed out to the point of getting sick. I decided that working while your kid is in this physical state, just isn't a good idea. I don't feel good about doing therapy when my mind cannot be fully present. Thanks to my great boss for being so supportive about me leaving this morning. Thank you everyone for all the good wishes.

Gary told me Dr. McDonald only does surgeries on Tuesdays and Fridays, so we are likely looking at a long weekend in the hospital. Please send seizure-inducing thoughts our way. :)

Eating was the most exciting thing today

Exciting news for the day: Sophia finally ate something after 48 hours of no eating! She ate about 2/3 serving of mashed potatoes. Just now, she requested and ate several bites of ice cream (hospital fortified.) :) When she wakes up, she is more herself. When I was asking her about food she would like to eat, I said something like, "You can have as much of whatever you want." Her response: "So I can have alcohol?" She is definitely feeling more like herself.

My work is close to the hospital so I'm here (at the hospital) while Gary takes a break. He said that the last time she vomited was 9:30 last night and she's mostly been sleeping ever since. She wakes occasionally because of pain or because she wants to change positions. When I got here about an hour ago, she was asleep but I said hello and held onto her hand. When I moved she wouldn't let go of my hand, so she's probably in a drugged state, but still knows what's going on at least some of the time. Gary said they both slept a lot last night. Thanks to Gary for sleeping all night in a small recliner. I wouldn't have slept much at all.

Thanks Raina, for bringing me food yesterday, that was really thoughtful and delicious. Also, thanks for the trashy magazines. It's a relief to know that Tom wants Katie back and that Rob's friends won't let Kristen "get away with this."

I asked the EEG specialist (I don't know her actual title) how many leads they used and she told me. And then I forgot. But I'm pretty sure it's 64. Isn't that cool? The surgeon showed us some CAT scans of her brain post-surgery and it was incredible. I'm going to see if I can get a copy and post it. There are electrodes all over the place on the left hemisphere. I don't know how he got them in so many places with a relatively small opening. I didn't realize they did that. I was thinking it was just in the opening that they put the leads.

Well, there's not much else going on at this point. I'm sure that if/when Sophia is more cognizant, she will get bored and would enjoy some visitors. Even though she's in the ICU, the nurse told me that they don't have a strict rules about age as they used to. They just want people to know that there are risks of children being exposed to things in the hospital. I will keep everyone posted.

Gary's taking the night shift

Poor Sophia kept puking on and off all afternoon and evening. The nurse called the Dr. and he changed up the meds to add another anti-nausea drug. This way, they can alternate anti-nausea meds so she will have more in her system without overdoing it. I'm at home about to go get something to eat with Chris. Gary is taking over at the hospital, so I hope they can both get some sleep tonight.

They are taking good care of Sophia, but I have a complaint (and this is for all hospitals that I've experienced.) What is up with not knowing the meds and doses that Sophia takes? Every time we visit the Dr. we update it to make sure it's current. Yesterday, I pre-registered on the phone. I was at work, so when the kind woman asked me about her meds, I don't have the mg. of each med memorized so I asked her, "Don't you have it in the system?" She looked it up (why didn't she have it up in the 1st place?!) and it was correct. Today, the nurse verified her doses. The pharmacist verified the doses. Then Gary texted me asking for meds/doses b/c the pharmacologist was asking for it. Can you believe that? It seems so inefficient! Anyway, Gary sent me a text saying that he wrote it on the board in her room. :) Nice Gary! I like the way you operate. 

Good luck tonight, Gary!

Warning: Post contains puke

Poor Sophia! She can't stop puking! (Those of you who know her well, know this isn't uncommon.) Anyway, they keep trying anti-nausea meds which knock her out, but aren't eliminating the vomiting. When she's heaving it increases the pressure in her head so there is bleeding. Nothing serious, but so sad.

Sophia's cool turban

Close up of leads
 

These leads are connected to her brain and connect to the black box you can see at the head of her bed. I'm curious how many there are because when they had the box opened, it looked like the black leads you can see have more than one wire in the sheath. This is how they do the "mapping" or monitoring of her brain activity. Since there are non-stop hours of data, if someone is in the room when she has any type of seizure activity, there is a button to push that marks the place so they can easily find it. How boring would that be to sift through?

Sophia is supposedly sleeping but when I was asking the nurse too many detailed questions about the procedure, she somehow made it clear that we needed to stop talking.

ICU

I finally got back into the ICU. It seems like she's been here for a while, so I'm not sure why they didn't let me know sooner. There are problems with a couple of the cables, so they are replacing those. They were probably waiting until that was all sorted out. (Although it's not a big deal.)

I decided that it would be great to have a treadmill in the ICU waiting area. I was ANTSY!

Sophia is mostly asleep. When she is somewhat roused, she's incoherently asking for water which she is not allowed to have yet. Apparently, neurological procedures cause nausea, so they won't give her anything for a while. She seems pretty miserable so it's hard to see.

Tried all 3. Didn't work.

And the Wait Continues

Chances are that if I leave, visit the bathroom or write a post stating that I'm still waiting, the nurse will come and fetch me, right?

The surgeon says that all went well. She is in ICU now but they are taking her to get a CAT scan soon so I have to wait until that's done before I can see her. He told me that she would be "angry" for a while. That should be interesting... Will that be more angry than the typical 12-year-old-girl-toward-parent anger?

Just talked to the nurse. They have all the leads in place and are just making sure everything is secure. Everything went well and Sophia is doing fine. The Dr. will come find me in the waiting area in 30-40 min, so it looks like I'll have to suffer through election coverage and taunting Lorna Doones for a while. :)

Off to surgery

Sophia was in a very upbeat mood last night and pleased at the cards, gifts, and so on that she has received from loved ones. In spite of such a life changing event, she wanted to go to bed and fell asleep easily. (That's Sophia.)

This morning at 4:40 a.m., she got up, scrubbed down with anti-bacterial soap and I washed her scalp like crazy. We made it at 5:35 (only 5 min. past our check in time, which I blame on the fact that there is no valet parking until 9 a.m.) Then the usual waiting, prep, more prep, filling out forms, and more prep. Sophia had Versed (sp?) and Tylenol before she left for surgery. By the time the anesthesiologist came to talk to us, she was so loopy that one of her responses to his question was, "I lay eggs."

Sophia's hospital garb
 It was a serious work out to get those thigh-high compression hose on her legs

She was off to surgery at about 7:40. She didn't want me to leave so that was really hard. Knowing how great they have been with her during past procedures definitely helps. Oh, when we were waiting in pre-surgery, my cousin (Dr. Butterfield) just happened to see me when he was walking by and came in to give hugs and wish us well. That definitely brightened my morning.

 

So apparently, what they are doing now is called... oh boy, I forgot what they called it, but it's not the mapping. Whatever the term is, they are removing a skull flap and placing electrodes on the brain. (Left temporal lobe.) The mapping is what they do during the next few days (hopefully fewer as opposed to more). They need to observe what happens when Sophia has a seizure and they need to see at least 3. With all of this information they can "map" as precisely as possible where the locus of the seizures occurs.

I'm here in The Night Shift coffe shop on the IMC campus enjoying some good tunes (I hear Florence & the Machine currently) and a hot beverage. The waiting room had non-stop election coverage. Will that really help people stay calm while waiting for loved ones in surgery?!? Terrible environment for peace. Plus all of their complementary snacks have gluten. So I would have been stuck listening to annoying commenary and staring Lorna Doone's feeling bad that I can't ever eat that delicious cookie again.

Well, it's been an hour, so I'm going to check in and see how things are going.