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
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