The Year of the Tumor

2017 was... hard.

The diagnosis of a 17 level spinal tumor was.. hard. The surgery was.. hard. The hospital stay was hard. Rehabbing my sweet 2 year old was terrifying. Balancing the needs/wants of my 4 favorite people (3 of them being 3 and under) while being separated by an hour most days was hard. Watching my sweet baby become a terrified mean child in the hospital was heart breaking. Seeing the exhaustion in my husband's eyes, dealing with things he should never have to deal with was tough. Asking my mom for more help than I would ever dream of asking for was painful. Being a nurse, but not having any idea how to help my child.. was terrible.

But, I expected all of that. While I sat at Dayton Children's back in April, receiving the news about my baby, I KNEW hard was coming. I heard "tumor" and I KNEW my life was about to get hard. I knew we would all hear, see and deal with things we never want to deal with. I knew it.

At the diagnoses, our people RALLIED around us. People I didn't even know were our people.... maybe they didn't even know they were our people... but they saw us in need and supported us. We were overwhelmed. If you know me personally, you know I don't ask for help. I'm what they call.. stubborn. ;-) Friends, family and strangers gave us emotional and physical support, shoulders to cry on and distractions.

But once it was all "over", life goes back to normal... right??

I didn't plan for the "after". Thank GOD, there IS an after. I guess there is always an "after", but this is a GOOD "after". I guess I wasn't prepared for how to move on after. The anxiety riddles me, especially close to follow up appointments. I am a totally different, sad, frustrated, teary, anxious person close to appointments/tests.  I haven't figured out how to move on, without letting the past 9 months control me. No one prepared us for how hard it would to overcome. Sometimes I feel like I'm living on borrowed time, like I can't exhale because the second I do.. something bad is going to knock the breath out of me again.

At midnight tonight, it's going to be magical. I am so ready to close this chapter and open a new one in 2018. I'm ready to take the new perspective I've learned on life and really utilize it. It is silly how amazing our outcome was and how down I get. Hello?! Does that even make sense?! No! Get it together, Mama!

I know I am lucky. I know my girl is a miracle. I know my family is going to ROCK 2018. I know my almost THREE year old had some stupid ass tumor that is never coming back.

Some awesome things came out of 2017. We bought an amazing house. Jake received a promotion. We both love our jobs! Our kids are the happiest kids ever. And our family/friends have proven themselves time and time again to be the world's greatest. And my kid, the one that had the surgery that could have left her paralyzed or worse.. yeah, she's RUNNING around, perfectly normal. We are BLESSED!!!

Onward and upward friends. Happy New Years! Thank you for being apart of the lowest of lows and the highest of highs this year.


“I am the LORD, the God of all mankind. Is anything too hard for me?"

3 Months Post Op

It has been 3 months since the best day of my life. Yup, I said it. May 11, 2017 was the best day of my life. It was the day I found out my baby wouldn't be fighting for her life against cancer. The 3 weeks leading up to that day were some of the worst days of my life. The days after that were hard.. some VERY hard (May 12th going into the 13th was the HARDEST hospital day by far).. but not the worst. Anything is better than cancer, right? Even our mystery beast is better than cancer.

May 11 was Vivi's big surgery. The day they sliced open her back from C2 down to L3, they cut through all her muscle, opened up her vertebrae, cut through her spinal cord and took out a massive tumor that we had seen on an MRI on April 18th, 2017 (the WORST day of my life). They put sensors all over my baby during the surgery to make sure they didn't lose any function in her body during surgery.

At the end of surgery, we knew it wasn't cancer and she didn't lose any mobility during surgery. See?? BEST DAY EVER. Recovery from this surgery hasn't been easy but I can't imagine watching my baby struggle to move again all while knowing we still had to battle for her life. I have said it probably 8434587693 times, I'm so glad the worst part of all of this was the recovery from surgery. Our outlook is not grim for our girl. She's a miracle. Vivian Leigh is my miracle child.

45 days in the hospital was hard. HARD. HARD. HARD. Some days were harder than others. My family was broken for a month and a half. Vivian was in a bad mood for a month and a half straight and we had to be within 10 feet of that moody child for a month and a half straight. And try to make her do things like eat/drink when nothing tastes good.. walk when it hurts.. use her right arm when it had no movement.. go under anesthesia for many, MANY tests.. wear a brace that rubbed her wound wide open.. multiple lab draws and IV sticks.. Lordy.. it was hard. It was exhausting. She handled things the best way a 2 year old who has no control over her body could.

Once they finally discharged my girl home, who could barely walk at the time without a ton of assistance and wasn't eating at all.. she progressed in strides. Within a week, she was walking well with a walker. Within a month, she was walking decent without the walk. And now? 6 weeks after discharge, she is pretty much running around eating like a two year old (which.. isn't super well, but we supplement with pediasure to make sure she is getting strong..)

Currently, we are working on the stairs with her. She does decent when she leads with her right. So, right now we are focused on that to make sure she can safely go up and down the stairs. However, if she leads with her left foot.. she is very unbalanced and unsafe by herself. It's strange because her right leg was the weaker one, but now it's her left. She'll get there. Her feet need a little work. It's awesome that she can walk, dance, shake it, etc. But, eventually, the way she walks, is going to start to wear down parts of her body. So while I'm extremely over the moon with our progress, I know this kid is going to require therapy for awhile and I'm going to have to really educate myself on the mechanics of her body. What we do now really will prevent future discomfort and surgeries.

She continues to have her back brace on. She will until at least September 15th. It doesn't bother her at all. Vivi actually asks to put it on and says "MOM! I love my brace!". It would be awful if she didn't. Lucky us!

Last week, we had a scare. I felt her neck and there was a bulge. She had no pain, no tingling.. but in that moment.. I almost lost it (okay, I did.. right, Mom??). The brace is supposed to keep her aligned and hopefully prevent her from having further surgery. And when I felt that bulge, I just instantly felt like our progress was for nothing. It felt defeating.

However, I made an appointment and was finally able to SEE the x-rays side to side. The one from in the hospital and the most recent one and.. she looks SUPER aligned. She looks AWESOME! I'm pumped. Dr. Mangano was out of town, so I saw one of the nurse practitioners and she thinks the bulge we are feeling is the bone fragments that he reinforced her spine with. The bulge is likely from that bone hardening and he had really reinforced that particular area because that was the area most likely to become unstable. Makes total sense. I really REALLY needed that. I really needed to see the xray to see tangible evidence that we are doing the right things.

There was a tiny area that concerned myself (and the nurse practitioner). There was a translucent area on her spine that was not talked about by the radiologist and the NP said she relies a lot on the radiologist. However, it was also on the previous xray.. which I know was seen by Dr. Mangano.. so if it was concerning, he would've said something. And it looks the exact same from xray to xray.. so while it made me pucker a little.. I feel okay about it.

Overall, we are doing awesome. Bryn and Vivian are the absolute best buddies. I'm so proud of how well Bryn treats her sister. Aubrey is officially at a stage where I call her a "monster" pretty frequently. Life is hard, but not much harder than it would be having 3 girls 3 and under.. I think our life is just supposed to be hard at this point. Haha! We just have a tad more on our plate than usual.


Just to be extra real for a second, I am TOTALLY over the summer. I've always loved Fall, but this year I'm extra looking forward to it. These nice days get me in a funk. Days like today.. beautiful, sunny days.. I should have my kids at the pool. Or splash pad. Or zoo. We should be doing all the fun things summer has to offer. We should've been in Charleston enjoying the summer week with our family.  But it's just too hard right now. And I can't stand the thought of Vivian getting an infection in her back. This summer bums me out. So, I'm over it. I think the Fall will be better because I won't worry about Vivi's back so much. The outdoor activities are less physical. And Vivian won't be so hot in her brace. It'll just be.. better. And if it's not better, feel free to bring me a pumpkin spice latte daily and a couple comfy sweatshirts.. and I might pout a little less. Haha!

But I do need to be thankful everything happened when it did. My kids have no idea what their missing out on and are totally happy staying at home. In a couple years, Vivian and Bryn would know the summer is all about parks and pools.

Shew! I feel lighter! Pout session done. Back to being thankful for all we've been through and how my girl came out on top. I'm so proud of that little stubborn thing.

 Sometimes I just have to remind myself.. we've come so far. In the above picture, it took everything to get that girl on the table, strap her in and tilt her up to standing position. She had cried herself to sleep. Scared? Pain? I'm not sure.. but I do it was Hell. Goodness, we've come so far


Look how awesome her back looks now!!!!

 A couple times this summer, I've taken just Vivian for about an hour each time in between appointments at Cincy. Love that girl!

XoXo
The Millers

Home Life

When people used to ask me about having kids, I would always say "It is HARD.. and AWESOME". That's about how it's been since Vivian has gotten home from the hospital. I think it's harder physically on us than when she was in the hospital, but it's just... better. I pinch myself every now and then seeing her in our home. It felt like we were never going to get to come home, and now it feels like the hospital was a past life...  a very terrible past life.

Leaving the hospital was a little messy. It took us awhile to get her supplies for her tube feeds. Follow up appointments were messy. And then, she started having spasms. And it took a few days to get her pain under control. Those few days were absolute hell. It was hard on everyone. Luckily, Jake and I were both off and were able to get things set up and take the time we needed to get her settled and figure out our new normal. She hasn't had spasms in a couple weeks and we weaned her off all of her medications. Hallelujah.

Initially, she was sleeping in her room in her own bed. She honestly did really well with it. The problem was that she wanted the brace off so early in the evening and couldn't just spend time relaxing. She has to lie flat if she isn't in the brace. No sitting, no pillows, nothing.. just flat on her back. It wasn't comfortable to sit in the brace, so she really couldn't watch tv. So we put the futon mattress in our front room and that's her new bedroom for now. It has a tv so she can comfortably relax watching tv at the end of the day. When it's "bedtime", we just turn off the tv and most of the time she is totally okay with closing her eyes and going to sleep. It's working out much better. I love that she has her own safe space to relax and doesn't have to sit uncomfortably on the couch in her brace to watch tv. It really has been a perfect spot for her.

She has been home for a month and she has progressed immensely. When we left the hospital, she was walking with the walker.. very.. very.. slow. I had actually ordered a stool for my house to roll around on behind her because walking with her was so hard on my back. Fast forward to today and she is running around my first floor with little supervision. She is able to bend to pick things up on her own and can walk up the stairs with our assistance. Vivi thinks she is big time and started crawling up the stairs without me yesterday. Talk about a heart attack! Can you imagine if she fell? Ahhh! It's cool that she can do it but.. not yet, baby girl. She has fallen a few times and it scares her, but her cries don't sound like pain.. just scares her. I mean, she's like a toddler again learning to walk. Falling is inevitable, but we try to prevent it as much as we can. She ha
s slight foot drop in her right foot. We put her in the "ASOs" at night, which look like boots (she loves them).. we stretch her whenever we change her diaper.. and we alternate foot brace vs. no foot brace to build some strength. It seems promising that she will be okay, but may need inserts in her shoes eventually.. pfff. I can handle that.

When you look at her, her arms look totally normal. No weakness noticed in one arm or the other. She has some bilateral generalized weakness just from surgery and not moving as much. We do lots and lots of crafts in out house right now to keep building strength. But her upper extremities don't concern me.

It took us awhile to get into Physical and Occupation therapy.. like.. 3 weeks.  If she hadn't been progressing so well at home, I would've been incredibly annoyed with the discharge process in regards to.. well, most everything.. but mostly her therapy. Vivi went from having therapy 3 hours a day to.. nothing.. for 3 weeks. NOTHING. It is really difficult to get into the Neuro-Rehab because there is such limited space which is why it took so long. Luckily, she's got Bryn who she wants to keep up with and has really helped with "at-home" therapy. She had therapy Wednesdays and Thursdays for 2 hours. She already is done with Occupational Therapy and has Physical Therapy just once a week. We may increase her therapy once she gets out of her brace, but as of now.. we are at a plateau of progression until that happens.

She has her sutures removed and did really well. Her back looks awesome. We took out her NG tube a couple weeks ago. She still isn't eating awesome, but she drinks really well. We have been giving her pediasure to supplement. Do you guys know how expensive that is?! $12 for a 6 pack. WHAT!!!! Insane. She drinks like 3 a day.. and Bryn drinks 1 a day because.. sister probs. I've tried to get Vivian to drink smoothies instead but haven't had luck.. yet. It's all coming together.

Her back brace will remain on until September 15th, at least. It's sounding like it'll be on longer.. ugh. She has a CT to see how her vertabrae are healing.. and if they are healing straight. We are trying to avoid putting hardware in her spine so I don't mind leaving it on as long as she needs it!!! She really doesn't mind that either. But, it just limits a lot, ya know? I just want my kid back to her baseline. Sorting through her summer clothes/swimsuits the other day was devastating to me because she is missing out on all the fun summer stuff. She won't get to even wear a swimsuit this year.. and that just is hard to wrap my mind around. But, I'm so thankful this is happening while she is so young.. she has no idea what she's missing. She thinks this is the life. Sweet girl.

After the suture removal, they decided to do an xray. I assume most people know what "MyChart" is.. but quick summary.. your health information is online. It send updates when new test results are available.. has your appointments.. BILLS.. etc. I hate it. I don't think it should release ANY test results until a doctor has discussed them with you.. but it does. And, like the glutton for punishment that I am, I can't help but to look. Her last x-ray showed a little "reverse kyphosis" and Dr. Mangano said it's totally something she could live it.. but if it progresses, it may need surgery. Well, according to the x-ray.. it progressed. Now, no doctor has called to discuss the results with me but.. ugh. So, we'll see. We decided to switch back to her previous brace. We liked the way it held her neck better.. and it was less HOT.. the problem previously was the it caused pressure areas. She wore it 24/7 though. We are going to attempt to have her wear it when she is up and off while she is lying down and hopefully straighten that spine back up. She sits more comfortably in it as well because it doesn't come down to her pelvis like the other one. We'll see. I'm willing to try anything to prevent my girl from going back to surgery.

I'm back to work. It feels.. strange, worse than coming back from any maternity leave. It's so needed for my mental health, but it's hard to be away from my people. Financially, it's necessary. I carry our benefits and we just moved into our new home when this all started... so those new big bills are catching up to us.

While Jake and I were in the trenches of Vivian's hospital stay, I said "I can see how people can get divorced when their kid has medical stuff going on". Listen, Jake and I are fine.. always have been.. always will be.. but that was a tough time. You learn to be super independent, we were both Mom AND Dad.. and our very little time speaking to each other was either on Facetime with the kids.. or brief text messages about what's going on with Vivi. It has been SO nice getting back to our normal.. ish. I really can't imagine going through all of this with anyone else. He's so strong on my sad days. And I'd like to say I'm strong on his sad days.. but.. he's pretty much a badass. He's better at all of this than I am.

Our only real outing (besides appointments) has been going to the 4th of July parade. We also attempted a cookout, but it was too hard. Aubrey and Vivian are a huge handful right now and require so much attention, it's really hard being out in public right now. But, I know it'll get better and easier.. and hopefully we can get back to running around like crazy people. (We all know how much Jake LOVES my non stop plans for us, right?!).

In summary.. we are happy, getting healthy.. and working towards getting our girl back to her baseline. She is killing it. I'm so proud of her. Bryn and Aubrey are amazing as well, being so patient with us. Home life is the best life!

She's coming HOME!!!

On Monday, Vivi had a spine xray after a week of lying flat. Lying flat may sound like a difficult task for a 2 year old, but in all honesty, she really couldn't sit up on her own if she wanted to. Her back has healed very nicely and her xray was great. Back to rehab we went!!!

I was really concerned with how far back the surgery and lying flat for a week was going to set us. I am just OVER being in the hospital. I want to stay as long as she needs, and not a second longer! 

Monday afternoon they did her evaluation, and she really hadn't lost much. It was painful for her to stand and walk.. but she did well. She really hadn't lost anything, but was just very tight and careful. 

Every Tuesday, the rehab staff and everyone involved in the patient's cases, have a meeting discussing how each patient is doing. At that meeting, they decided Vivian was not behind on her discharge date at all. She will be discharged THIS Friday, the 23rd. AHHHHH!!! The physical therapist told me at therapy and when we came back the nurse said "I have good news for you, but from your behavior, I can tell you already know." Haha no poker face at all. I couldn't contain my excitement!!!!

My excitement immediately turned to nervousness. Vivian still won't take any medications (which was her strong point throughout this.. even on her worst days, she used to be the bomb at taking medications.. not anymore!!). She won't drink. And she only snacks. Luckily, she loves almonds, terra chips, popcorn and carrots. Oh, and BACON! So.. she gets a little nutrition.. but not a ton. 

In my heart, I feel like she will respond so much better in her own environment. I think we have pushed and pushed and pushed her in this hospital "Eat this, now!".. "Drink.. drink now.. drink and then I'll do "xyz" for you.. drink and then YOU can do "xyz"".. "Take this medicine.. it's purple! It's pink!.. Take this medicine so you feel better!" ...I mean, we have come at this kid in so many directions.. she has heard all our tricks. She's over it. She refuses everything orally. I'm praying at home, she feels comfortable and just eats when we eat.. drinks when Bryn drinks.. takes her meds easily..

That's my hope. But realistically, taking the tube out of her nose and hoping for those things isn't logical. What if she doesn't.. if she eats and drinks like she does now, she'll end up right back in the hospital. We can't take the risk of taking out the tube in hopes she'll make a 180. So.. we will be discharged with her NG tube. She will be on bolus feedings 4-5x a day.. and hopefully we can wean them off over the next month or so. 

Definitely complicates things.. but I can handle it as long as I have my people under one roof. I can do hard.. Hell, I've been doing impossible for 2 months. Hard, I can handle. 

We will go home with her walker, wheelchair, back brace, leg braces, stitches, NG tube and.. MY GIRL!!!! 

The stitches will come out in a few weeks. She will come back to have them removed under anesthesia. Her incision looks amazing still!!!!

Lots of hard work ahead. Lots of doctors appointments. Lots of therapy. Jake and I have the next week and a half off. We were actually supposed to be leaving for Charleston this Friday so we had next week scheduled off for vacation. I'm not sure yet that our week off together will actually feel like a vacation. I'm ready to figure out our new normal and continue to get my girl on the right track. It'll be nice to have everyone home for a week so we can all be together and figure out what our house needs to be Vivi prepared. I've tried to think of everything.. but.. I know it'll change all the time. 

We are super excited to have our girl home and to see everyone. However, I do ask that everyone is very sensitive to the fact that our girl will need a lot of care once she is home and we will not be up for long visits.. or many visits at all. 

Or maybe we will be?! I'm not sure. We just don't know what the next few days.. weeks.. months will bring. Please be sensitive to my "No". 

I would love to do a cookout for my girl to see everyone.. but I need to see how comfortable she is at home. As of right now, she doesn't even want to go home. That's honestly a blessing, because it would be so hard to hear her say she wants to go home all the time when she can't.. but now that it's happening, I was hoping she would be a little more excited. She will be when the time comes.. she loves our house. We will see. At some point, I'm sure we will have people over to have a cookout.. we just have to feel it out. 

I can't WAIT to bust my girl out of here Friday. Whirlwind of emotions. It'll be awesome to see my girl with her dogs and sisters again. Thank you everyone for the support throughout the hospital stay. 45 days. Whew! It's too much! 

Optimistic

I know I keep referring to our journey as a roller coaster, but I can't think of any other words to describe it. I have LOW lows.. and HIGH highs.. and everywhere in between. One doctor can walk in and tell me awesome news... the next one can absolutely devastate me. (Also, PSA.. my mom sent me a pic of her back from Saturday.. 2 days pre surgery.. it's posted below)

That being said, after such a crazy Monday.. we've had a good week. A lot of progress after our backwards step.

They found some e.coli in her cultures. This was devastating to me because it would be caused by stool. I am the one cleaning her up, so I felt like it was my fault (I know, Moms have a funny way of making everything their fault). But honestly, she hasn't had MUCH diarrhea and her incision is much higher than her diaper line.. AND it was in her neck. I promise we are being clean. Dr. Mangano seemed suspicious that this was the actual culprit. Maybe he was just trying to make me feel better (but he's not really that kind of guy).. but he said he thinks it's just as likely that the sample was contaminated since it grew so few e.coli. Also, her white blood cell count was normal, indicating no infection. Puzzling, right? Her CRP (which is a lab indicating inflammation) was slightly elevated. He said this would be elevated because of her spinal surgery. The treatment for e.coli is a wash out of the wound (which he had done in surgery) and rocephin. This is an antibiotic she would be on IV for 10 days. She started this antibiotic. They redrew her labs this morning, specifically the CRP. If it is trending down, they will switch her to bactrim, which can be taken orally. And she won't need her IV for 10 days. They don't typically use IVs on the rehab floor because it interferes with therapy.. so this is good news!! Just waiting on the results!!!! (***update.. CRP went down.. WHOOOOO!!)



However, because she IS still on IV antibiotics and needed labs.. she needed a new IV this morning because her IV was bad. Merrr.. nothing like being woken up at 5am for multiple IV sticks on your poor, scared baby. They ended up calling the VAT team (vascular access team) and starting the IV.

The awesome thing about Vivian (well, one of the MANY) is she recovers SO WELL! She can be so scared, and crying so hard.. but as soon as it's over, she proclaims "I'm better, Mom!!!" and laughs. And after she gets a lab draw, IV, tube placed (replaced, readjusted, etc.).. she always tells me after "my friend did that". I love that baby girl. She is so quick to forgive and turn things positive.

Vivi's NG tube wasn't properly functioning so it's taken a few adjustments and tests to get it to properly function. That was... fun! ;-) But so important. My girl needs a LOT of nutrition to keep up with that healing. I want to maximize all her healing right now so we can get back to rocking out therapy. The problem with her tube is.. it makes her want to eat and drink even less. And she won't take oral medications now. I think it just feels really funny (especially since she has to lie flat).. so we put everything through her tube. But her feedings are giving her enough calories and fluid that we don't have to be concerned as much about her not eating or drinking. She gets 3 boluses throughout the day and then a continuous feed throughout the night, I can tell she has more energy and her mood is improving. Yay, Viv!!!!

We still have no answers as to WHAT caused this. The rheumatologist are on her case now. Maybe everyone else is exceedingly more intelligent than I am.. but I was like.. um... what exactly is a rheumatologist? Do they think she has arthritis? (Does Grandview have a rheumatologist?? lol) I had no idea what kind of diseases they would be looking for. Inflammatory diseases. Specifically sarcoid, again.. even though the CT didn't show it. They were also looking at Wegener's disease.. which also doesn't make sense. The doctor actually called her "an enigma". Cool. Basically, we just don't know. And it's frustrating.

The plan is for her to stay on the Neurology unit throughout the weekend then back to rehab Monday. She will stay in her brace while she is up and out of it while she is lying flat. In August, she will have a CT done of her spine to see how she is healing. At that point, we (okay, they).. will decide if she can come out of the brace or wear it another 3 months.
I asked Dr. Mangano yesterday to basically shoot it to me straight.. "my girl is going to eventually have screws and rods placed, right? It's more of a matter of WHEN?!". In my mind this whole time, I assume she is going to need a spinal fusion at some point. He doesn't think that's the case. He did this same surgery on an 11 month old 7 years ago.. and that kid is walking around perfectly fine. Now, his wasn't as long as Vivian's.. but it did involve his cervial-thoracic area.. which is the main area of concern. (Hey Mom, there is the warm, fuzzy anecdote we were looking for back in April!!! Haha!).

He even said he thinks she may be running around by the time of her CT in August. WHAT!!!!!! I love this guy. (You guys.. he only says that from a neurological point of view.. he hasn't actually seen her up lol! But.. just from her movement in the bed..)

Her wound looks really good. It doesn't look like it'll heal as pretty as before.. but.. whatever!!! I've got my essential oils on board this time around. ;-)

Things just seem less grim. I really feel optimistic I'm going to get my girl back to baseline. I know we have major adjustments coming our way.. but I feel okay about it. I feel at peace with the hard work we are putting in and the hard work we will continue to put in because I just know I'm getting my girl back. My dancing, singing, funny, sweet, tumor free girl.

Minor Setback

Goodness. WHAT. A. WEEKEND.

I left Thursday evening for home. My girl's back looked, less than appealing.. but we were watching it closely. My mom was at the hospital Thursday night and Friday night. Jake drove down Saturday and just left a bit ago.

Over the weekend, it got worse.. and worse.. and worse (ps.. picture at the bottom.. don't look if.. ya know.. weak stomach). Her eating became less.. and less.. and less. Everyone was super stressed. 

Sunday the decision was made to go ahead with the NG tube. Girlfriend was just not getting enough protein to heal that back. Poor daddy had to be there for it. They said she handled it better than expected. Another reason for the NG tube was because her back looked.. awful. They wanted to start her on antibiotics. The amount she needed to take and the taste required an NG tube. Okay, fiiiiiiiiiiine. 

Her back was also developing a rash. The new brace doesn't allow much breathing room so the sweat and heat was causing a rash so they started her on nystatin cream for it. They also initially said she could leave the brace off when she was lying flat in bed.. but changed it to "keep it off" all weekend to allow the rash to simmer and the incision to heal. 

However, this morning when everyone was rounding, they thought about putting a wound vac on it. Now, I didn't see what it looked like yesterday or today.. but I have heard a description of everyone's reactions to it. If someone medical is struggling to look at a wound.. you know it's bad. 

When Dr. Mangano rounded, he decided to take her to the OR.. like.. ASAP to open it up, clean it up and reclose it. 

I had already planned on coming to Cincy today because it's the day Jake and I switch off.. so I was pretty close to ready.. but I had my girls. I was planning on bringing them down to visit Vivian. But, with surgery in our very near future.. I called my sister (and brother) to come watch Bryn and Aubrey. They were about 40 minutes away so my best friend (who lives 3 minutes away) came over until then. I jumped in the car and made it to the hospital about 15 minutes before they took her to the OR. 

The surgery lasted just under 2 hours. They put new stitches in her. Actually, I'm not sure what they put in her. I meant to re-ask once I got my mind right.. but I didn't. Instead of "running stitches" they put in individual stitches (that might not even be the right word.. I'm not sure..). These stitches can stay in for months if need be. However, they apparently suck coming out.. so once she is healed enough.. they'll take her BACK to the OR to take them out. The good thing about these is.. if some heal quicker than others.. they can take individual ones out as deemed necessary. The other ones had to come out all at the same time. 

Dr. Mangano said everything  looked good. Her upper back was very inflamed and causing the healing tissue to stretch, it was just a matter of time before it opened up completely. They did cultures to make sure there is no infection. They have her on IV antibiotics just in case. In 3 days, if the cultures don't grow anything, she will come off of them, 

The are going to start her on nutrition through her NG tube. I guess they started some last night.. but there are new orders to Nutrition to revise what she gets. 

Vivian will have to lie flat for a week.. well, at least 5 days. Obviously, she can't participate in therapy if she has to lie flat, so we were transferred to the neurology unit for the next week. We've been here before. It's fine. Hopefully we can get back to rehab by the weekend, but definitely by Monday. 

This will change our discharge date. Womp.. womp.. womp. You guys know how pumped I was to get my girl home, 

But I need her well when she comes home. So this was all a very necessary evil. 

 

Keep my girl in your prayers. She's been through a lot. She's tough though. 

The wound pictures below were taken Thursday. Since then, all those open spots started draining (and throbbing with her heartbeat). The big blister opened up. You can see how the skin is thin and stretched.. surgery was to avoid all of that completely opening up. 

Quick update

Alright, quick update because I feel like a lot happened the past couple days. I'm on my phone though so it won't be lengthy.

Good news! My girl sits all by herself. Usually she asks for a "chair break".. but yesterday she sat for over 45 minutes by herself, zero assistance, reaching acrosd the table and not asking for a break. You guys.. on Monday, my arm was exhausted holding her up. This is huge!

She can stand on her own, but I don't trust that as well as her sitting quite yet. Her legs still look like they are going to buckle sometimes.

Vivian now has the cutest mini walker to walk with. She initiates steps and uses minimum to moderate assist. She calls her walker a "Blankie holder". She never had obsessions with blankies until.she came to the hospital.. now she begs for it all the time. So she loves that she can hang her Blankie on it and walk. She even has a slight grin on her face while she's walking! Yes!!! Her braces for her feet are doing their job! Her left foot one has a joint that can freely move because that foot is more stable, but her right one is secure since that is the weak foot. My mom found shoes to go over the braces (they are bulky so it was difficult) so we are set up for success now. My mom is literally the bomb. She even brought stuff to the hospital to give Vivi a little foot spa day. So fun!

Now, the not so fun stuff.

Her brace continues to rub really bad. She's got a blister almost the size of a golf ball on her upper back/lower neck. You know those "pimple popper" videos.. very similar. It's ugly to look at and obviously painful. Her lower back actually looks better! Her head has an additional bald spot where it's rubbing.. ugh! So, obviously.. the brace just isn't right for my girl. So.... we are switching to a bulkier brace. It's called a "CTLS" brace.. cervical, thoracic, lumbar, sacrum... brace. All of it. Whatever. I'll take bulky over it hurting her. She doesn't mind it.. and it's not forever. Bring it on.

She took the CT scan yesterday really well. I honestly felt really great about it. So many people doubted that I could get the oral contrast in her.. I began doubting myself. But boo yah!! My kid is the bomb! She had her IV put in without sedation and took it like a champ.. a champ whose mom and 2 other nurses were holding her down. I mean, she recovered quick haha! She received a bolus of fluid in CT and again when we got back. We've got our girl back on track!

So here's the thing... they found a nodule on her lung. It's small.. 4mm. It's calcified.. and even if it wasnt.. it's too small to biopsy. So.. it's just puzzling. At some point, her body had an infection that it walled off.. but it really doesn't give us any explanation of anything. It just kinda leaves us scratching our heads. It's not bad news, I don't think. The docs are just "hitting the literature"... again.

I don't know how to feel. You get news and you expect to have a reaction about it.. I don't know what my reaction should be?? I'm just.. confused.

But I AM in a much better place than I was a couple days ago. We have two weeks until I get my girl home and I AM PUMPED!

Thank you for continuing to follow our journey. I knew this would be a success story, I just knew it!!

Pity Party

These 4 walls have me going crazy this time around. I am just SO FRUSTRATED with everything. It is really depressing that I'm forcing myself to see positives. Typically, I'm just a positive person.. but boy oh boy.. if you've talked to me the past few days.. I am TOTALLY a Negative Nancy.

Don't get me wrong. I am very aware Vivian is progressing leaps and bounds. LEAPS AND BOUNDS. Girlfriend can stand on her own with minimum support. Sit on her own with minimal to no assist. Walk with a walker with minimum to moderate assist. She doesn't CHOOSE to use her right arm over her left, but she does really well when she does use it. She doesn't fight people trying to do her vitals.. she smiles during her breathing treatments (and makes me clap for her after).. and she doesn't cry every time someone walks in the room. She really IS progressing.

Now for my rant.

I AM OVER THE HOSPITAL. I'm over it. OVER IT! Her back brace is a necessary evil. I know.. I know.. and it doesn't even bother her that much. But GOOD LORD, it's killing my baby's back. The incision looks bad. There are 4 areas that are now open and draining. They rip that dressing off multiple times a day to check it (which is a huge stinking process to take her back brace off and put it on every time and obviously she hates it). I am super happy with how close they are watching it, but hellloooo.. it looks like shit. It used to look awesome. HELP ME OUT, PEOPLE! Her spine is way more important than her skin.. I know it.. but.. I hate it so much to see these open wounds. It's been a stinking MONTH!

The Spine xray showed she is leaning forward a bit too much. Thoracic and lumbar areas look good and straight, but her cervical spine has changed a bit. Dr. Mangano isn't overly concerned, but he also doesn't want to take the brace off. Her spine is OK the way it is, but we don't want it to progressively keep going that way.

So the brace stays on.. 24/7.. pressure points hit and all.

I still didn't think her brace was fitting right, so I mentioned it to Neurosurgery again (for the 15008th time). These braces are just super hard to get a good "fit" on adults.. now it's on a 2 year old who is carried around most of the time.. with different people putting on the brace.. trying to figure out how to move again.. it's just not consistent. Yesterday, when she was sitting, I noticed the back part was a good 2 inches off of her head. AH! Her head is supposed to be totally straight and unable to turn! The company came again today (I'm pretty sure they hate me) and adjusted it while she was actually standing. We marked it with white out how far each strap should be in each loop. Brilliant. This way everyone (Jake, my mom and I) all put it on the exact same way.

Vivian is now dehydrated and I personally think it hurts her when she pees. She likely has a UTI. But of course, as soon as I say something she stops peeing.. for like 20 hours. And once she did pee, the "Bag" that they place "down there" to catch the urine, wasn't securely attached and didn't work. We have gauze in her diaper to collect her urine to test it now. They again asked for a NG tube. I politely..ish declined and forced my kid to take fluids until she started having adequate output. She hates me, but I can't stand the thought of her having an NG. If you saw this kid get her temperature taken, you would understand. My girl is scared. She is having a procedure done tomorrow where they have to place an IV. If they think she needs fluids.. helllooo.. place it now and give my girl fluids?! They want the NG tube because she has to have oral contrast tomorrow for her procedure and she has to drink 270ml in an hour. So they want the NG tube for fluids and for the oral contrast. But again, I think we are OK. I WILL make it work. I can do this!!! Sometimes the easiest way (like throwing a tube down my kids nose to her belly) is not the best way. I would rather my kid be mad at me than traumatized anymore.

There is a smaller child across the hall from us. I assume he is 18 months- 2years old. He cries a lot. Instead of Vivi saying "Oh, he's hurt" or "he's hungry" like she would say about Bryn or Aubrey... she says "Ohhhh.. dat baby scared!". Scared. That's the emotion she goes to. Not hurt. Not sad. My kid is scared and recognizes it in other kids. It breaks my heart so much.

They still have no idea what caused this in my child. They are doing a CT of her abdomen and chest to rule out Sarcoid (which Dr. Mangano said is typical in 50 year old African American Males.. we are reaching..). I'm glad they want to do this scan tomorrow. It likely won't be very telling.. because they have already done an MRI to visualize everything.. and saw nothing.. but.. why not check again. We don't know if this tumor is something that will come back because we don't know what caused it. And at this point.. we likely won't know. Everything that takes a month to come back, has come back.. negative. This big ugly shithead tumor that reaked havoc on my baby is a medical mystery.  Am I going to be a worry wart about my Vivi the rest of my life? Right when I feel like we get past this, are we going to repeat this? Or are my efforts to keep her spine straight pointless and my kid is going to have to have a spinal fusion regardless?? AH! (Jake, I know you are shaking your head at how negative I'm being.. I know!!!!!)

Didn't I tell you guys at the beginning?! SUPER Negative Nancy! I can't get myself over this funk!!! These 4 walls are doing it. I want my girl home and healthy. I am not at all pleased this is happening to my sweet baby.

I am very aware there are people out there who have it worse than we do. We are reminded of how lucky we are daily. Man, did we hit the jackpot or what?! But today is just not my day to be gracious. Yesterday wasn't either. I've just been down the past couple of days. But "I will get back up againnnnn"

Thanks for the continued thoughts and prayers. I know it's hard to tell from this pity party post, but my bad days really are far and few between. We have the best support system every. We appreciate everyone reaching out to us and saving us!


XoXo

Road to Recovery

Lordy, the road to recover isn't an easy one. It is such an intense roller coaster, but we are learning how to survive it. We have been VERY BUSY getting this girl better. So this is an update from the past few weeks!

I had a meeting a couple Fridays ago with everyone involved in Vivian's case. It was an emotional one. While I went into it knowing Vivi would likely still be in the hospital a couple more weeks, I wasn't prepared to hear "another month". Good Lord, a MONTH!?!?! That just hurt my heart. Her "estimated discharge date" is June 23.

So initially, I thought it was too far away. Then, I went through a week where I thought it still wouldn't be long enough. She just had SO FAR to go.

Then about a week and a half ago.. something clicked. She started moving that right arm like she never struggled with it. She clapped.. held it up.. high fived.. any "big" motions, she was nailing. Fine motor skills still need work. She is working to grasp things better. When she's working to do something with her fingers, she usually shakes.. like she has Parkinsons. However, she doesn't give up. Even if she struggles, she continues to try. Getting the arm in Mr. Potato head tiny hole isn't easy, but she doesn't stop until she does it. Yeahhh girl!!!

Even when her arm started to get movement, she still was semi-angry all the time. But a few days after, her legs were able to move a little better. She could take steps.. with a ton of help.. but she was learning to trust her legs again, especially that right leg. It seems as her body starts cooperating, she becomes herself again. The nurses, therapists and respiratory therapists started to meet the REAL Vivian... my SWEET girl. And now.. she's stealing hearts.

Her right leg was still really week. Her left leg was able to bend, lift up and move forward. However, her right leg could bend.. lift up.. but not enough to clear the floor so it required assistance from the Physical Therapists. A couple days later, she could clear the floor with it.. but when she would land her foot on the ground.. she would almost roll it and would hyperextend her knee. Not okay. Not a safe leg to be walking.

The ordered soft "moon boots" (different than what I use on my adult patients though). We put them on to prevent foot drop and to get those muscles working. 2 hours on, 2 hours off and then on at bedtime.

They helped, but not enough. She was then fit for the "hard" braces. These are braces that do the same thing, except fit her foot better (they were casted to her foot), and are something she wears while she's up. The negative part of these is they are more permanent, and don't allow the muscles to "learn" themselves, However, they are necessary for her safety. We don't want an injury to that right leg. And honestly, even if she has to wear it forever.. but can walk.. meh, I'll take it. They are really stinking cute on her.

Another barrier has been her incision. It doesn't look.. awesome. There are a few areas that drain. It doesn't LOOK infected. She's had a fever a couple times and they've worked her up.. no infection in her body. But, the incision just isn't healing like it should. It's been 4 weeks on Thursday.. things should be closed up. They have changed the dressing type a few times and keep a close eye on it. They've been really on it with it. I can't ask for better care. The back brace is likely the cause of the incision struggling to heal. It's on 24/7.. so.. it creates a sweaty barrier.

Speaking of the back brace.. another barrier of ours. It is on 24/7. We take it off only to do her incision care.. clean her up.. and change her clothes. Typically we do all of that at the same time. It is padded, but.. it still hits a lot of her pressure points. She has a bald spot on her head from it that we are all concerned will open up. It hits her lower neck funny and has cause some irritation and inflammation. Also, below her chin. We added extra padding to all of those places. Typically, these braces aren'the worn 24/7. However, our neurosurgeon seems very thorough. And honestly, as long as it's working.. I don't mind it staying on her all the time. If it prevents a spinal fusion in the future.. count me in!! We've had to get it fit a few times. She wears the smallest one they have, but it is too big at times. Today, I finally feel like we got it "right". I just hope we didn't do any damage to her spine the past month.. ya know, besides the whole massive surgery thing. We did an x-ray today, but the doctor won't be through until tomorrow to tell me the results.

We are also struggling to get my girl to eat or drink. I have to manipulate her for every sip.. every bite. We have tried EVERYTHING. But listen, she's 2. What toddler eats "enough"? Anyone? Anyone? There are days I wonder how Bryn is even alive. Well, now that Viv is off steroids, she is struggling. And they are watching her every move. Guys, she TWO!!! But, I get it.. healthy eating promotes healing.. I know.. I KNOW! An NG tube has been mentioned to me multiple times.. if she doesn't start eating better, they want to put one in her. No. I already said no. NO. If I thought it was going to be life saving, I probably would. But.. I just don't find it necessary in her case. Are my nurse friends shaking their heads at me?? You guys know their awful!

Honestly, though, Vivian is doing great! She really has come a long way. And I know she'll continue to rock it. She's not quite able to sit on her own yet. That's a huge barrier for me to get her to come home. When a baby can't sit, you just put them in an exersaucer.. high chair.. lay them on the ground.. etc. But this is a toddler.. she doesn't fit in those things.. and can't just lay on the floor.. ya know? I need her sitting. I want her standing. And I would like for her to be able to take steps before she comes home.

My mom has been a HUGE help with taking some of the hospital shifts. It's allowed Jake and I to have 1-2 nights a week together. It is so stinking nice. It also makes it so I still feel like I am able to "run my house".. chores wise. We haven't done much decorating or anything to make our new house feel like ours yet.. but honestly.. that'll just wait til next Spring and summer. Once I get my girl home, I just want family time all the time. I am going to decorate her room though before she comes home. Princess chic!? Idk.. something cute and easy.

My mom also made our little family into figurines so that Vivi can bring her family to therapy. She loves it!!! Can't wait for these little guys to come to our dollhouse at our home!!!

We survive by doing a lot of facetime. Vivian is only allowed 10 visitors at the hospital, and that includes Jake and I. Add grandparents and that only leaves 4 more visitors (siblings don't count!). Facetime has been our lifesaver!

I'm ready for my girl to be home. But I know it gets tough there, so I'm trying to be patient. We will get there. We have had so much love and support. We are so appreciative to everyone. This could've been absolutely awful. Our people have really taken some of the stress off of us. It's so appreciated!!!