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Wednesday, February 20, 2013

The Medical "Stuff"

I realized I never posted about Ramya's medical "stuff" so I thought I'd share tonight.  Ramya has spina bifida, as Madi does.  Both have the most severe, but also most common, form, myelomeningocele.  Generally speaking, the level of paralysis a person has depends on where their level of lesion was.  If you look at the photo below, you will get an idea of what I mean...

Madi functions at about an L2 level, meaning she has movement in her hips but not much below.  Ramya has a lower level, I would guess about an L4-L5.  She has movement through her knees, but not in her feet/ankles.  She can stand and bear weight, but her ankles and knees do not support her for long without her leg braces.
Ramya has hydrocephalus, as Madi does.  Madi has a VP shunt (meaning the shunt goes in to her head and drains in her abdomen) on the left hand side.  Ramya has one as well, though hers is on the right hand side.  Because her hair is so short, it is very prominent, whereas you wouldn't know Madi had one unless you knew to feel for it.
Ramya had two clubbed feet and had surgery to correct them.  Madi had a clubbed foot as well, but she was treated using a slightly newer method, the ponsetti method, where they did serial casting to gently move them in place over time. 
Ramya had renal reflux, like Madi has, and was getting infections, so they did a bladder surgery to correct it.  We knew about this surgery, though we didn't want to do it until we got her home.  Apparently they also did another surgery, one where you cath through the belly button.  This is a fairly common surgery for those with spina bifida, because it makes it easier for people to cath themselves.  The problem, though, is that 1- I don't have the supplies to cath her this way and 2- things don't look right to me, so I'm wondering if it is either closing up or was not done correctly.  They did cath her through there at the orphanage, but it took many attempts and tugs in and out, and she looked very uncomfortable during it.  We go in to the urologist pretty soon and we will do an ultrasound to see what all was done and be able to tell if everything is working like it should be.  I do still cath her, but I do it the "traditional" way, like I do for Madi.  They would leave the cath in overnight for 10 hours, and not cath during the day, but I cath her 4 x a day and not at night, since that is more what is recommended here in the States.
Another surgery Ramya has had done is one where they put a little port in at the top of your bowels so that you can (literally) flush your system out to keep clean.  Again, I haven't done this before and don't have the supplies for it, but also, the doctor in India said he thinks it is closed.  Sigh.  It's a huge not fun surgery, so I really hope it wasn't all for nothing.  It makes me sad to think that no one was there to sit with her while she was recovering and in pain, and that it may have all been for nothing, because she may just need surgery again.  Grrrrrr......
I noticed an odd scar on her upper abdominal area and it turns out she had been sick and not eating well, so apparently they just did surgery to give her a g-tube.  After she got better, she started eating again, so they took it out.  Why the heck they would put her through all that is beyond me, but again, since I wasn't there to ask questions and advocate for her, so it just got done.
Another thing I noticed is a bunch of little round scars/marks all over her arms and legs.  It looks like she must have had the chickenpox or something similar at one point.  It's odd, though, because they have been vaccinating her for that still.  I'm interested to see what the pediatrician thinks it is from when we go in for our first visit.  

Emotionally, Ramya is at maybe a 2 year-old level.  She may be slightly higher, between 2 and 3.  This is pretty much what I expected, so it's no surprise to me at all.  I try to take things at her level and understand that is where she is, for now.  Sometimes it takes lots of reminding myself that even though her body is big, her emotional development doesn't match.  I just try to keep that in the forefront of my mind so that I am more patient and understanding when problems arise and so that I can set realistic expectations.

Ramya is fairly tall.  She is significantly shorter than Conner, but she is also taller than Madi.  She is so very thin, though, like a little bean pole.  She gets cold very easily because she 1- she isn't used to cold weather and 2- she doesn't have any body fat to keep her warm.  I'm working on fattening her up a little though ;).

We have appointments coming up quickly to try and evaluate where she is at and what she needs.  I have the pediatrician, orthopedic surgeon, and urologist booked and will call the neurosurgeon's office tomorrow to book that as well.

For now, life chugs along.  I'm very exhausted after Madi was up all night not feeling well ( for dinner she didn't like what was served so she ate some eggs we had just bought from the store and her face got all red around her mouth pretty much instantly after eating them, and then she was up about every hour that night....crazy!!  I'm not sure what that is about because that's never happened with the eggs we get locally).  Ramya is doing well.  I still hold her a lot but she sits and plays with me in the same room now as well.  She still wants to sit on my lap to eat and still likes to be fed.  She is eating pretty well and I am thankful for that!

That's about it!  I will update when I know more for the specialists :)


mc said...

Thank you for sharing about medical things. It's very helpful to understand spina bifida better! Ramya has sure been through an awful lot of medical procedures.

Frances said...

I am so happy for your family! I've been following along though the SB connection site, which is how I found your blog. I am so glad Ramya is home with you all and it sounds like you have got a great plan to get everything where it needs to be in regards to her health :)

Unknown said...

This is an interesting article. I just started working in a hospital and I am still getting used to everything. I really need to research about medical laboratory supplies because when I walked into the supply room I did not know what anything was.