Exciting News!

Well, things got crazy and I stopped documenting every day at the hospital! YIKES. haha! Now it's December 9. My bad!

But, now it's time for some exciting news!

On Friday, Lexi had her 4 week post-op appointment with Dr. Gooch. What a great appointment this was! Dr. Gooch was absolutely blown away and pretty much speechless at Lexi's progress! Originally, Lexi's tone/spasticity was a 5 (that means the muscles tightness). I'm not sure how high up the scale goes, but 5 wasn't good. When they checked her again, Lexi was a 1!!!!!! A ONE!!!!!!!!!! That means normal! They checked her walking, her everything and they were so pleased with how she is doing. Even though we still have a long road ahead of us to full recovery, and she will always have a weaker side, we were told that come the year or so mark, Lexi will have a normal gait (that means the way she walks, your foot and ankle pattern) and will be walking like a normal kid her age!!!!!!!!!!!!!!!!!!!!!!  AMAZING! The surgery has been a complete success, even better than they hoped for!

I was bursting with joy and Lexi could tell all this excitement meant something awesome and she was so happy. I about burst into tears at hearing the news that the surgery was more than a success and that Lexi will have a normal gait when all is said and done.

This may sound simple to you but this news is more than happy and exciting and amazing to us, it's everything! I have cried many a time thinking about it. I had to explain to Lexi as we walked to the car that sometimes people cry because they are happy. She thought that was silly, but could tell that it was a wonderful thing.

Does this mean Lexi is fixed, cured?
No, but it does mean that life will be much easier and much better for this little rock star.

Stroke Strong

#strokestrong

#lexiupdate

Thank Goodness It's Friday! (Day 5)

TODAY! Okay, hopefully I can write about today. Haha!!!

This morning: Lexi woke up fairly early (7am) and I was hoping she'd sleep more! Bummer. The oxy dose is less, but we are doing more Tylenol and Motrin. She wasn't feeling good this morning and threw up all over her bed, poor girl. On the positive side, it made it so I had to hold her for the first time since SUNDAY! We got her cleaned up and gave her a bath using the hospital bath wipes and their no-rinse shampoo. We even brushed her teeth. ;-) After that, she just wanted to be held, so Terrell held her while I went to grab us breakfast. Unfortunately, Lexi hasn't been able to receive enough fluids, so they said if she didn't get enough today, they were going to have to IV her again, so we've been trying to get that up to par. She does NOT want an IV. Her nerve meds have been upped to help with the nerve pain and sensation. She had her first full OT AND PT sessions (30-40 minutes each!!! Almost up to the 45 min sessions!) At OT they worked on sitting and she played with a farm house. PT essentially did the same thing, and at the tail end, they tried to get her legs moving and had her "walk". She can't walk yet, obviously, but they are getting her moving. And guess what? Lexi sat up by herself for a few minutes! Way to go, minion!

This afternoon: SCARLETT CAME (Lexi's BFFFFFFFFFF) and Lexi LOVED it. They were cute! And Lexi got more balloons! Then she had more OT/PT and at OT, they played a ball game and had lots of fun. Bonus....a service dog was there at the Rehab gym! So Lexi got to see the sweetest lab retriever named Diva! They played "fetch" and Lexi LOVED LOVED LOVED it! After OT she didn't want to leave, but we had a 20 minute break before PT. PT was  HARD. They did more of the "walking" thing and it was honestly the hardest thing I've ever seen Lexi do. Very tough and interesting to watch. She literally cannot move her legs in a walking position way very much. We pushed a mini shopping cart and tried "walking" down the hallway. I had to get down on my hands and knees and try to get Lexi to "walk" and "push" the shopping cart at me, while I crawled backwards! While I was doing it I thought to myself...man...I shoulda been a PT!!!! Then I realized I already was. Just then it hit me that I am my daughter's strength when she has none! Parents make or break stuff like this and I will MAKE it, not break it. My heart aches for the children who do not have advocates. I feel blessed that I can be Lexi's mommy. She's my girl.

This evening: Another suppository for Lexi, unfortunately. But after it was over, she finally ATE! First time today, aside from a bite or 2 of hashbrown late morning. She chose a CHEESEBURGER. hehehehehe. Silly kid. We also have 1-2 more weeks here in hospital and I'm rooting for only one more!

And here I am typing like a maniac trying to get updated! Oh...and my hands are SO dang dry because I don't have lotion. HAHAHA. Tonight, we don't have any rooms to be in aside from our hospital room so it will be exciting. ;-)

Hey parents, be there for your child(ren), okay? They need you.

Day 4 (Thursday)

Okay this is going to be hodge-podged together because I'm not remembering anything hahaha.

Went back to Primary's and everyone was still asleep. I woke T up and sent him back to the hotel to let him shower and get ready. It was our last bit at the hotel and so we used it up!! :) Lexi was startled when she was woken up by nurses and sat straight up - totally didn't register her back pain and didn't know where she was....and then she froze cuz it hurt so bad! Luckily the pain seems to be on the mend?!?!

My dad had to go into work in SLC so my mom came and was just in the hospital room with us for a bit yesterday.

Nurses said Lexi needed a couple hours of oxygen during the night (not a huge deal, just documenting) to help her out from the narcotics and pain meds they'd been pumping her with.

My cousin Ryan and his girlfriend Micah came to visit. They're sweet and brought her a bear and another balloon. (Lexi and her balloons = hehehehehe)

We had to do a suppository on Lexi yesterday (helps her have a bowle movement) to help her feel better since she wasn't eating as well as she should be. That helped.

Lexi also had her first OT session (about 20 min). She played ball. Her second OT session was also about 20 minutes, and we did the shape sorter and then more ball!

We've visited the play room a few times and she LOVES the Barbie dollhouse. It's definitely more difficult to play Barbies in the dollhouse when you're in a wheelchair but that doesn't stop her.

Lexi doesn't have much volume control so she's LOUD. :-) I think that's an understatement.

She still complains of her righty foot and leg being up and getting bigger and bigger. All sensory issues and sensations from the surgery. It will get better.

My parents left to go back to Iowa yesterday as well. It was such a blessing to have them there with us! Wish they could've stayed longer!

Last night, Lexi was feeling GOOD! We got her in her wheelchair and surprised Daddy!!! :) Then we went to the playroom. It was fairly short lived but BOOYA! she had an absolute blast!

We were lucky and got a mini-Ronald McDonald room at the RMcD Family Room and Terrell was able to sleep in an actual bed last night!!!

Lexi also let me lay next to her and SNUGGLE for a bit! <3 <3  It was great! Terrell and I played PS3 (which we brought from home hehe) and she just snuggled and watched. It was great.

Hopefully I got something written there....kind of short sentences and slapped together but that's okay!

Day 3, Part 2

Crap that was a few days ago!

Lexi was finally moved to the Neuro Trauma Unit (NTU) #2022. This is the unit she was originally supposed to be on anyways, so that's cool.

Day 3 (Wednesday?!) proved to be an intense night. Lexi was HYSTERICAL and so upset. She was in so much pain and could not be consoled. It took hours for her to get calmed down and was finally able to once all the meds kicked in. Wow. It's true. I've never seen someone so angry before!!! Honestly that's all I can remember from that evening.

My sister in law Erika came to see Lexi. Erika was in town for work and is such a sweetheart! I hope I'm not mixing up my days.

Terrell let me stay at the hotel the last night we had it. What a rock star.

That evening was awful and I definitely shed my fair share of tears. It's interesting that I don't cry a whole lot. Just being Mom and not wrapped up in the emotions. Sometimes it makes me feel like I'm being "cold" but when I talked to my mom, I realize I'm not being a bad person and I'm not cold towards it, I'm just doing it and that's how my body is dealing with it. It makes me feel bad...sometimes I feel like I should just be bawling and angry about all this but really, I'm not and I haven't sobbed since my meltdown BEFORE surgery. Is it tough? OH yes. Is it awful? Sometimes! But it's those moments where I see my little girl like she is and I think, this is good. We got this.

Day 3, Part 1

So while I'm here I'll update on today!

I came this morning around 8am. Around 830 Lexi started being in a lot of pain. Turns out her epidural was leaking onto her bed and NOT into her body, hence the pain!! Man! They decided to pull the epidural out early. They picked on her lots, having to roll her and hold her on her side. She was NOT a happy camper. They finally got the epidural out around 945ish and they started her on just oral pain meds. Yay for oxycodone! Lexi took a GLORIOUS nap from 11 until almost 2. Which is awesome since she's hardly slept since we've been in the hospital!! Thank you oxy!

We met with a social worker in regards to her freaking insurance and she was AWESOME. She took us down to the office her at Primary's and now we have a decision from a different division (it's called ABD, basically for disability) coming in about 3-5 days. Karla (social worker) = life saver. She asked all the right questions, even some I never would have thought of. They'll also reimburse and we were coached through the system lately by Jeff (Medicaid liason person). Freak yeah! Hospital people rule.

Lexi is pretty angry and rude today! Sad day! BUT she has her epidural, catheder and IV out! Go Lexi! She also took her first ride in her wheelchair. First time sitting up (sooooooo painful for her. We took pictures to try and depict it!) and we went for a ride with Lisa (PT) and Taira (OT) down to the rehab room. Lexi didn't like sitting up much. She was in so much pain and it was coming out with really rude and angry words. After we talked with Primary's rehab, we took Lexi up to see the playroom which is full of toys and crafts that the kids where the kids can play. Obviously, Lexi isn't really able to yet but she enjoyed it anyways.

When we came back to our room, a vase of flowers and a balloon were waiting there from JD Collings! JD is her pseudo-uncle and one of our best friends. He sent it all the way from Virginia! She's in heaven with all these thoughtful and fun surprises! ;-) Thanks, guys!

That's a basic run-down of today.

Day Two (as best as I can remember)

I really need to start figuring out how to type this on a computer at night because come the next day, my brain is shot!

Yesterday, Lexi was still flat on her back. She absolutely hates being turned over when they need to check her back. She did great though!

She received a visit from the Allison Goodworth and her son Matt, who are extended family of Kaylie (Terrell's sister). Matt is a patient of Dr. Walker, too, and has been for years. It's great to get reassurance from people you trust that the doctor you have is AMAZING! They brought her a princess balloon and 2 stuffed animals (Cooper and Cray-Cray, she says!) She also got a surprise from my good friend Chelsea from ALL the way in Iowa! A balloon and monkey animal! Lexi was in heaven! She was kind of silly yesterday. I think my favorite phrase was her singing "I am a child of God, and He has sent balloons!!!"

She's very obsessed with Daddy. Mommy - not so much. Sad for me. She gets anxious when Daddy isn't around. I have a hard time sitting still in that hospital room, and Terrell isn't phased by it! I'm pretty sure it should be the other way around...Terrell usually goes crazy when confined in a certain place! Lately it's been me! So ansy. I went to the Ronald McDonald Family Room about 50 times I think ;)

Last night we had LOTS of family come visit Lexi. Jodi came up from BYU and the Nelson's (Lisa, Derek and Mackenzie) came down from Layton. Lexi and Derek had fun playing and Mackenzie is just the CUTEST! It was fun to see Lisa too - haven't seen her in so long and she looks great pregnant with baby #2! Lexi was anxious to see Jodi! Jodi asked which of her things was her favorite (the animals, etc) and Lexi replied "YOU ARE JODI!"

With the amazing visitors, Lexi got kind of overwhelmed since she's so used to just me and her or just Terrell and I and her. But she loved it and ended the night in giggles before they left.

She ate like a champ - her WHOLE dinner, hot dog and pears!

Before I left last night, she got feeling sick and wanted to throw up. Poor kid kept saying "my throw up is coming up soon Mom!" She never did throw up thank goodness but we pumped in nausea meds in her quick so I'm hoping that helped.

I slept at the hotel last night and Terrell stayed with Lexi. Think the hotel will let me transport one of their beds to the hospital room?! ;-)

Seriously, I need to write at the end of the day, or throughout the day, or else I forget everything (like I did about yesterday!)

Day One (Surgery Day)

Since we didn't get to the room until 3pm, I don't expect this post to be very long, but I'll do my best! :) Hopefully I can remember. That's why I'm typing this all out so I can at least remember some of it!

We got to our room about 3pm which is exactly when Dr. Walker said we would. What a smart man! :)

Since we were in the IMSU instead of NTU, the room was a little different than the room we were expecting. No big! We met the nurse(s), tech(s), etc. and had lots of other doctors and specialists come in throughout the day to check on Lexi and make sure things were going okay. I started writing down the names of all the nurses, doctors, etc. so I could list them all out. So far, it's a long list!

That child would not sleep!!! She was basically in a drugged awakeness from 3pm - 10pm! Stinker. She was so drugged, she definitely doesn't remember that day, but that's okay!

She kept complaining of her Righty leg being in the air, although it wasn't and would cry until I put it down. We weren't sure how to handle that I just ended up putting light pressure on her leg and holding on to it saying "Okay I'm doing it! I'm putting it down!" Reminds you of the amputees who have phantom leg syndrome. where there is sensation or pain in the leg that is gone. Basically the brain is sending different signals than she's used to and doesn't recognize that it's different now.

They had to move her a lot (roll her on to the side) to check her back (epidural and incision) and that produces some intense pain for her even with her epidural, but

We watched probably 4 Barbies shows yesterday! Plus some. HAHA! She was a trooper and just wanted to eat Chicken Nuggets! And she did! She was a rock star downing her juice, and food. That'a girl! :)

She really loved talking to all the nurses and told them anything and everything! One of the cutest... "Mom, those nurses...they are so sweet, huh?" <3

Lexi was incredibly itchy on her tummy! Side effect from the procedure and such, so they gave her Benadryl which didn't work, and eventually just skipped the Benadryl and gave her a more intense prescription which seemed to work. She was so itchy she was trying to use her fork from dinner to itch her tummy! What a goof.

The epidural was bleeding a lot, but they just cleaned it up and left it in and it's just leaking minimally now. They had to change all her sheets, etc. She didn't like having that movement!

We decorated her room with princess pictures my mom and done for her and my dad made "L-E-X-I" out of paper and hung it up. It's quite the princess room now!

At night, Lexi developed a fever, which is pretty common, so they were in and out monitoring that. I don't think neither me nor Lexi got much sleep last night but I'm sure grateful we were able to get a little!

For dinner, my parents stayed with Lexi so Terrell and I could have a "date" down at the Rainbow Café. We were pretty impressed with the food and the prices. After dinner, we took a tour of the awesome new Ronal McDonald Family Room on the 3rd floor, which is absolutely incredible! If you want a good cause to donate to - this is it!!!! That's where I'm currently typing. :-)

Since we have a hotel until Thursday morning, we decided to utilize it. Terrell slept at the hotel last night, and came this morning, then I went to shower. We'll alternate for the next couple nights.

We're grateful for all the incredible support from yesterday! All the posts, texts, messages, calls, and pictures! OH MY GOODNESS! Those pictures were awesome. We showed Lexi every single one.  You guys all rock.

Oh, and that was long not short. My bad! Hope I didn't miss anything. I probably did. ;-p

oh here is something that I forgot! Her face and legs are pretty swollen and she looks so cuteshe is a rock star.

Recovery Room

Lexi was in the recovery room for about 45-60 minutes before they called me in. Only one parent was allowed to go back for the remainder of the time in the recovery room, so of course I jumped on that! :)

When I went back she was kind of waking up. She hated it and was in so much pain, which was to be expected. She was so pale and her face was swollen. She looked so tiny in that adult sized bed!!!

She kept complaining of her hurting - first her feet, the her knees and then her "bum"! She was most likely saying her bum because everything was worked at the very end of her spinal cord, near her bum! She was too cute...she asked me for Desitin because her bum hurt! :)

The nurse had to keep pumping in more meds because they couldn't get her pain under control enough for Lexi to relax. The max dose of the crazy pain meds was 4 doses and they had to give her 3 before she would relax enough to be moved. They also had to push the pain button to release a different med in her.

She wanted to go home, then back to the hotel. She kept asking for the hotel in between her delirium! So sad. But she really liked our hotel I guess!!!! (It's true - it was nice!)

They didn't have a chair for me, so I just stood by her bed for a little over an hour waiting for her to be recovered enough to head up to her room. It was hard, but surprisingly I didn't shed a tear. I have never seen a little person in so much pain as I did yesterday. On that 3rd dose they were expecting her to go into respiratory distress due to so much meds, but she never did! Stats never dropped. Her heart rate took forever to get to normal because she was so distraught, but once we finally got her calmed down enough, she just layed there, first kind of asleep, then blank staring because she was so drugged! Poor little minion! (Yes I just said minion!)

All in all she was in recovery for about 2 hours, which was expected, but she was looking good, so they sent us up to her room. Originally we were supposed to be in the Neuro Trauma Unit (NTU) on the 2nd floor, but due to staffing, they sent us to the Infant Medical Surgical Unit (IMSU) on the 3rd floor.

When we were ready to head up to our room, Terrell and my parents met us in the hall and she wanted to hold Daddy's hand on the way up.

At this time there was her IV still hooked up, a catheter, and her IV, so we had to be with a nurse at all times. These are all still in place. Man, I should have written this all down LAST night! I can't remember a whole ton else from the recovery room, other than watching Lexi in pain and then drugged! Poor kiddo!

Operation

Lexi was taken back to the OR around 9:30-9:40ish.

We recieved our first call from OR at 11:10am. The nurse said things are looking great, that her vitals were too, and she went to sleep great. He also said that they were now entering the spinal cord and that we would either receive another phone call update in an hour or would hear from Dr. walkers when they closed her insicion site.

A little more than an hour after that call, probably around 12:20pm Dr. walker came into the waiting room and Terrell and I went into the consult room to hear about the surgery.

He said all went great and she really is a perfect candidate for this surgery. I love hearing that because it always reassures me that it was the right and best decision. He said that they stimulated all nerves from L1 to S5 which is basically the entire very lower portion of her back. They cut around 40-45%. He also told us that when stimulating the nerves for her foot and ankle, the ankle normally relaxes right away but hers stayed very tight and tense do it required more stimulation. The surgical team was closing up all the skin and such as we spoke and Lexi was out of surgery at 12:45pm. 

Pre-surgery

We have been sitting in the waiting room now for just over 3 hours and have been at the hospital for about 5. So far the day has been fine. Lexi was kind of angry this morning which is definitely understandable. We waited in presurgery for about 45-50 minutes and then Lexi was taken back for all the presurgery stuff. Vitals, etc. then the surgery prep. We had to wash her with special cloths following the surgery protocol using one (CHG I thinkit was?) cloth on specific areas and then she got into her hospital gown stuff. She was a champ. Then they brought in the Versed which is the happy juice they give to help with the anxiety, etc. The presurgery nurse had a cool bird puppet named Freida thatLexi thought was so silly. When it was time to take the Versed she said I WILL DO IT! And grabbed the medicine syringe, put it in her mouth and pushed in the meds. Rockstar. Since Versed works quickly we went right to the wagons and into the presurgery room to meet with th doctors and such.

 We talked with Dr. Gooch who introduced us to a visiting medical doctor who is here from Florida who would be observing Lexi's procedure. Then Dr. Walker came in and talked about the surgery a bit. He told us again what he was going to be doing and then told us about the epidural and such he was going to be placing. Lexi will have e epidural from surgery time to at least through tomorrow, possibly through Wednesday. Then we met with her anesthesiologist Dr Bowlden/Bowen (I can't remember which it was) who talked about the anesthesia an other meds Lexi would be receiving as well as the breathing tube.

All the while Lexi is out of it and chilling in the wagon watching Monsters Inc. haha. She won't remember that. ;-)

From there Terrell pulled miss Lexi to the see ya later doors and I walked alongside. She was so out of it. At the doors we gave her kisses and hugs and she said "where am I going?" She doesnt remember anything nor will she remember those doors! I held up okay but as they pulled Lexi through and we turned around I definitely teared up and Terrell did as well. "that's our baby girl" I said. "yes but think...in 6ish months she will be running around like the other kids," he replied. True. Very true.

We met my parents in the waiting room and here we are. And have been! Our bums and backs hurt, but heck that's nothing compared to what Lexi is feeling,

More posts later on the updates we received while we've been waiting.

Night Before Surgery

Tomorrow morning Lexi will be having her surgery! I almost can't believe it. We've been talking about it for over a year and it's been planned for about 6 months!
I decided that I've been so wrapped up in the organization and planning and scheduling of things that I haven't really thought about surgery and now...it's here! That's insane.
I'm grateful to have my parents here as well as Terrell. I had an absolute meltdown last night so I'm glad people are physically near me to support me! Even those thousands who aren't around us physically...I can feel that support!
Sometimes I want to tell myself to CUT IT OUT because it's not me that's having surgery.  It's Lexi!  I've thought about that and I decided that yes it's true, its Lexi. But Lexi has a little piece of me, her mommy. It's not something you understand unless you are a mom. Especially a mom of a child with special needs!
Tonight Lexi was able to receive a blessing. What a gift it is to have rhe Priesthood in our family. Terrell and my dad were able to administer the blessing.  Such peace ane comfort from our Heavenly Father. I was also able to receive one.
I haven't cried as much tonight as I thought i would. Maybe the meltdown last night covered it. Haha! I did, however, decide that I'm not wearing makeup tomorrow because i know that water works are coming!  To be safe in case I don't want to feel like a complete schmuck tomorrow,  I bought water proof mascara. So we shall see how that holds up! :-)
I will write more later but seriously I think my hand is cramping from typing this thing on my tiny touch screen keyboard via smartphone. Man. I need a laptop! :-)
T minus 10 hours until check in.
Be brave my Lexi. Sweet dreams!