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!!!
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.
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!!!
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