Glad to be back home!!

Home Sweet Home!!
I've been out for a while and have forgotten to post anything on this blog and was reminded today about it. I left the hospital early on October 18th,  I was scheduled to leave the next Sunday or Monday but a religious festival was happening and I was upset about not being there with all of my family because it is a huge ordeal and I didn't want to miss it! By the time I would've originally gotten out, the festival would've already ended. I had lots of fun seeing all of my family and met some new friends. I then went home Tuesday and usually spent my day laying down resting in my bed, reading a book or slowly walking around my home. The coming Saturday I went to church in the wheelchair the hospital lent me and walked around a bit. I've gone to a couple restaurants slowly regaining my strength and distance able to walk. I often have to lay down if I have the chance because standing or sitting too long gives me hip pain.
     The following week my mood improved and so did my physical being. I've been able to walk a lot more and not having to rest as much and I've started back up on school work. Yesterday, and Thursday, I actually attended classes. On Thursday, I only attended my first class, Music, and just watched my class since I wasn't able to play my violin or sing because of my lung capacity has decreased but it will heal. Yesterday, I went to Biology and ended up staying for Algebra as well. But I got pretty tired in Algebra, but that also could've been because I didn't know what the teacher was talking about at all!!
     I'm on my way the road to full recovery but it's a long road but I've gotten so many cards and prayers from everyone, telling me to stay strong. I have over 300 cards now!! A box full of cards, and another for the envelopes. I get them from everywhere!! I've gotten cards from Australia, Canada, all over the USA!! It's incredible how many people know and care and I really appreciate it all!! I love that everyone cares for my well-being even if they don't know me very well, and all the kids drawings for me! So sweet!! Thank you all so much for caring and for all your prayers!! I'll post in about a week or so!!

End of Day Thursday, October 10, 2019

The day was quite eventful in which Emily was surrounded by staff this morning trying to figure out the best way to drain the fluid from her right lung.

They began by doing an ultrasound to verify the location and amount of fluid and then sedated her, taking her into surgery to install a drain line into the lining of her lung. Apparently the fluid was not actually in the lung, but in the lining of the lung and the outer wall. The fluid was actually collapsing her lung inhibiting her breathing.

At around 1:30 p.m. they were done and drained between 200-250 ccs equivalent to a cup of water, 8 oz. After that was done, I made a quick trip to home and get another change of clothes and came back.

It was noticeable that her situation had greatly improved and was able to talk.

Her biggest complaint was not being able to freely move her right leg, which is still tingling. The stomach area is still ultra sensitive, however, she's not whimpering or moaning like before, which shows drastic improvement and most of the discomfort was caused by the shallow breathing.

I suspect we should have a very restful night and tomorrow is a new day.

Beginning Day 2 of Recovery in ICU, Thursday, October 10, 2019

After another effective night of rest, it's a bit of a slow road to recovery.

We learned yesterday, from some X rays that there is some fluid in her lungs, but Dr. Sucato said that it is to be expected, but watched after. New X rays were taken this morning to see if it is still there or dissipating. Emily has very shallow breathing and it's largely due to the sensitivity of laying on her chest a full day of surgery just like last week. However, another sensitivity has been created after this second surgery with the removal of the ribs connected to T8 thoracic vertebrae. It has created such a painful sensitivity to her stomach and reaches out her entire body.

The nurses did raise her to a slight incline this morning and are hoping to slowly get her moving and upright, but it will be gradual. It may be that she will be here a while.

She whimpers and grunts with every breath as it appears to be a struggle, but as we're told, nothing threatening...thankfully.

Morning after... (Wednesday, Oct. 9, 2019)

Emily had a relatively good night although being visited every hour whether to check her pulmonary breathing or to give her movement tests just to assure she still had movement in her legs and arms.

I failed to mention that they did remove the halo at the end of this surgery and she notices it in being able to move her head more freely in bed.

She woke up initially fine, but then began experiencing some discomfort from nerve sensitivity on her stomach. It eventually subsided and she was able to eat egg and croissant, along with some milk and orange juice.

The doctor ordered her a pint of O+ blood just to give her a boost. All levels are normal, but he just felt she could use it for a quicker recovery.

She is to remain on her back through tomorrow and then they will plan to raise her up and go from there.

Out of Surgery and in Recovery

We're all with Emily now in recovery and it will just take some time.

What we're most interested in is that she did have what the surgeon calls, "2-3 events." What that means is there were 2-3 instances in which the spinal cord was compromised. That translates right now that she has some weakness and tingling on her right side from her arms to her toes. Still too soon to say what this will be long term, but the best part of it is that she can move all parts of her body and there's been no significant damage that we can determine at this time.

The surgeon described to us the monitoring disruptions during the surgery and that due to the spinal cord disruption, they could not extend her as far as they had hoped to without causing more damage.

Emily says her back is hurting and very sensitive to touch, but she's talking.

I (dad) will be staying with her tonight in the ICU and we will see what tomorrow brings.

We're thankful that this is appearing to be over, for the most part, and now we looking to a full recovery.

Thank you to everyone for the prayers, texts, visits, cards, emails. Please continue to intercede on her behalf that she heals completely and has the best outlook for the future.

So far so good...

I've been receiving updates from the operating room every 1-2 hours and the latest update was the one we were waiting for.

Completion of the removal of the thoracic T8 of the spine with no complications and no monitored disruption of the spinal cord. He is now implanting the two support rods.

This is the news we were hoping for. No invasive wrangling of the spinal cord. Now the final word will be when she wakes up and if she has any tingling or noticeable affects from the surgery itself.

Here is a pic of a normal spine for comparison.

Final Surgery(ies)

Good morning everyone,
This is Emily's dad getting out a quick update. I see she last posted a week before last week's surgery, of which we were hoping to be the last.

It turned out, after 7 hours, that they were not able to get to the most critical aspects of the surgery and that is to remove the T8 vertebrae and associated ribs and install two permanent titanium posts with screws. Since that was not finished, a second surgery date (today) was planned and potentially anticipated.

So, here we are today and she is now in surgery. We're expecting a long day. I want to share with you the model of Emily's spine. One of the pics are of Emily's friend going through her own ordeal with spina bifida, Chelsea. It has been incredibly helpful with these two having each other.

You will see how malformed the spine is and T8 indicated.

Sunday of the Last Week

Sunday Night
     Hello! I am going to try and post every night this week because it is going to be my last full week here at the hospital! I can't believe this time has passed so quickly, I'm super excited to go back and see my family and friends!! Over the past few weeks, cards have still been coming in, some are even from Australia and Canada... I have counted them all and I have a total of 152 cards! WOAH!!! I have 82 cards on the front of my door, 69 cards on the back, and you can't forget the one that flew out of the window!! I've put all of my envelopes in a box that HAD contained some very delicious cookies from my cousins!!

     When I'm not doing homework I'm busy painting! I've found a real passion in painting and have found that sketching is not the only art form I'm good at.

     My surgery is next week on October 1st, I'm just a little more nervous than usual because it is a deeper and longer process surgery but I know God will guide the surgeons hands perfectly and let me be a happy girl! I miss everybody so much and I can't wait to come home! I'll post tomorrow night and I might include a memory of being here! Talk to you later!!

Appreciation!!!!

Wow!! So much appreciation!!!

Hello!!! I just wanted to say THANK  YOU SO MUCH! I have been getting so many cards from all over the USA! I had already started putting some up when I first got a few cards, But now I have so much that I had to do it on the front and the back of the door. I put all of the side opening cards on the front of the door, there’s 46 of them!  I put the rest of the cards and papers on the back of the door, and there’s 31 of those including the one that flew out the window!!

I appreciate everyone who’s sent me a card  with thoughtful notes inside. The amount of cards that I’ve gotten at the hospital is probably more than all of the cards that I’ve gotten in my whole entire life combined! That’s a lot of cards!! My mom tells me “there’s a whole new stack of cards waiting for you.....” I might need a new door!!  I love everybody so much and I thank you for everything that you’ve given me, try to find your card in the 77 cards I have!!

UPDATES!!

Hello!!! 

   Hello!! I actually forgot about this blog until last night so I am now here to continue updating you on what's happening here in the hospital. I have been getting so many cards and gifts and I really appreciate them from those who give them to me. Here is my door of cards and papers!! I've gotten at least 35 cards, and several gifts.


   I've been behind in my schoolwork because since I'm not in the classroom it is harder to understand what to do. So I've mostly spent all my time doing schoolwork, but when I'm not I'm in activities or Child Life! I can't believe next week on Tuesday, it would be 4 weeks already!! They have scheduled my surgery to be October 1, so 3 more weeks left!! Last week on Wednesday, they took X-rays and what a difference you can see!

In the right picture, the bottom curve is a 34 degree curve. On the left side, the bottom curve is 26 degree's!! This is a 8 degree difference, pretty good! The top curve did increase by 1 degree though...but I still have more time in the hospital to correct it!!
I am doing great and I hope everyone else is doing great too! I will try to remember to blog!! See you next time!!

New Traction Devices!

My New Everything!

     Hello!! I am sorry I haven't been blogging, I've just been so busy with figuring out my schedule for school! I am in 8th grade and so the work gets harder. It's been even harder not having an adult making sure I'm working on my homework and not getting distracted! I am working hard though to make my education in the hospital count! I have also been starting Physical Therapy! In PT, we do bunches of neck exercises, because when you are in traction your neck hurts from being pulled up and it becomes stiff and sore. In PT, we bend our neck to keep it from getting to stiff. We also do shoulder and arm exercises with exercising bands. We do balance games like hopping on one foot, throwing and catching on one foot, etc...We also just go on the treadmill, stretch or lift weights. 

     I just got my new walker and bed traction!! The walker does do more than the wheelchair, I can tell from neck pain!! Haha! In the wheelchair, my neck wasn't hurting or stiff, but in the walker (just as the PT coach said) my neck has been a bit sore and stiff. I will put up some pictures of me in my walker soon. I also just started bed traction last night! It's not the greatest, I can move around but I can't lift my head or turn easily. Sometimes it's loud at night and it wakes me up, I think this is the traction I dislike most, but I will get used to it...(I hope)

     I have painted something new! This is one the back of a wood instrument (just for little kids,) it is a galaxy with tree silhouettes, it is called Falling Stars.

     I also got my name in sticker form put on my halo!!

     I am in Room 319, if you want to come visit me. The best times on weekdays would be after 

4 o'clock, and on weekends you can visit me whenever. You can contact me at emsnyder100@gmail.com if you have a question. I will try to have a time where I blog. Thank you guys for reading and supporting me!!

Trying out Traction!

Trying out Real Traction!

     Hey, it’s me Emily again here to update you guys! I couldn’t blog after the surgery on Tuesday because I was feeling so bad, I was throwing up after I ate and drank, and my head just hurt so much! I rested all day! My cousins came and visited me and gave me some yummy brownies and a cute potted succulent!! I didn’t sleep at all Tuesday night either because I couldn’t find a comfortable position. Wednesday, I felt a little better and I ate with no problem! My dad brought me a delicious, warm croissant! I went to Child Life, (kids playroom/activity room) and I decorated a mini notebook.
     Thursday, I went to Child Life again and I played the Wii and I painted a beautiful ocean picture!
 
It's supposed to look like those streaky fade into pictures.
     I later went to the upstairs atrium to do some fun activities and I painted another thing.

I saw this idea on Pinterest and I thought it looked cool so I decided to paint it.
     Yesterday on Friday, I stayed in my room, my cousins came to visit me and gave me lots of things to do! I got a new sketchbook, a calligraphy set, a knitting set, and a fluffy pillow! I was also painting another painting. Remember that little cute succulent my other cousins got me?
I painted it!

I was super proud of this painting because I don't usually paint and my skill is more in sketching.
I went to Child Life at 3 o'clock to play once a month BINGO! I didn't win but in the end everyone still got a prize, and I chose out a remote control helicopter that didn't really work. I slept great last night and only woke up once! It's Saturday now and I am going to draw something in my new sketchbook! I am getting used to the halo being on my head (I thought I would never get used to it!) and I am able to sleep at night with no pain or discomfort. I am eating great, and love all the food my parents brought me yesterday! I am getting tons of emails from people, telling me to stay strong!
     I am changing when I update this blog, instead of every Saturday, I'm going to try to post more often. I will try to post every night so that you guys know how I'm doing! I really appreciate all the support and gifts from everyone and I'll talk to you later!

Halo Day

   Halo Day 😇 

      It’s me, Emily Snyder and I’m going to be blogging about my time here in the hospital. I’ll try and post every week on Saturday about what’s new and what’s currently happening. 

      Today I’m going to have a surgery in about a couple minutes to get the halo put in. This surgery will take about 30 minutes, a very quick surgery. I will post more about how it went after the surgery.

       I’m going to put a link of a video explaining how halo traction works. 

#'s 13 and 14 Surgeries - 2018

I can't believe that I failed to post the last 2 surgeries. I'm being prompted to update the news of those 2 from last year seeing as Emily will be facing her biggest obstacle thus far of her treatment.

I will go on to describe what happened with 13 and 14 in 2018, but today, we checked her in for 8 weeks of traction.

That's right, Emily will be living at the hospital for the next 2 months getting holes drilled in her head tomorrow in order to install a hallow to allow her body to be suspended and lengthening her spine. This will be followed by a surgery in October to finish the treatment.

I'm giving authorship to Emily so she can update her day to day while at the hospital in the coming 2 months.