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!
