Working on getting better

I believe these really are the most difficult days in this process, and despite the difficulty there are a lot of positive signs too.  She slept quite a bit yesterday (Saturday) as well, and the first time she tried the prone cart, she did not like it AT ALL.  She was able to tolerate about 1/2 hour in it, then wanted to go back to bed and fell fast asleep.  I had thought she would enjoy getting out of the room, but I think the position was uncomfortable after being on her side or back for so long.  She also didn't like being strapped into it.  She was pretty cranky in the evening, and had a very restless night last night.

Then this morning we tried the prone cart again.  We went outside to the Healing Garden, a lovely accessible garden/playground just for the kids in this hospital, right off the skyway that links the main hospital to the therapy clinics.

The weather was perfectly sunny with a little breeze and it was so nice.  This is the only smile I could get out of her.  Mostly she just fussed about not wanting to be in the prone cart.

Back to the room for more sleeping.  She perked up for lunch, fed to her by one of her nurse friends named Rachel.  After lunch, Rachel took her to do an art activity in the prone cart.  I don't think she complained as much the second round.  During this time I was able to get outside for a lovely hour-long walk.

We got her back in the prone cart for another hour this evening, and by that time she was saying, "Actually, just to tell you, I like the prone cart now."  I took her to the skyway and we read Ramona the Brave. That made three hours today which I think will make the physical therapists happy.

Now that she is disconnected from all of the hookups, and weaning off some of the meds, they are trying to increase her independence little by little.  When she needs to go to the bathroom, she has to sit on a reclining chair that has a hole in the appropriate spot (it's called the bumblebee commode because it is yellow and black).  They also asked her to help roll on and off the prone cart from her hospital bed.  While at first she needed assistance even to turn over a little bit, now I think she is almost back to normal with her upper body strength.  The idea is to keep her straight and aligned so that her back can heal properly.

Her nurse Lisa discussed with me what the rehab goals for this week will be (I think the occupational and physical therapy goals are separate).  They want her to start eating independently, dressing at least her top part independently, and using the commode at least half the time.  These seem well within her grasp to me at least physically, although I know she enjoys having other people do the work for her.  Lisa also said that she will be using the prone cart to get around all this week.  Next week she will use her wheelchair.  The week after that, she will use a stander, which is like an upright wheelchair.

I had a chance to talk with a couple of the nurses who have watched rhizotomy surgeries performed.  It was so fascinating.  I had read the technical description, but their description helped me understand it a lot better.  They said that the surgeon cuts through the skin, and then slices with a saw into the top part of the backbone (called the lamina), basically bisecting it horizontally.  The top part of the bone is peeled up and taped down to the upper back.  Would you have thought the backbone was so flexible as to be able to do that?  Underneath that is the dura, which is like a coating, which is also cut away.  Underneath the dura is the actual spinal cord which looks like a bundle of white threads, just the same thickness as embroidery threads.  They lift each one with a tool like a little crochet hook, and stimulate it to see where it is connected to.  They can tell where the nerve is connected to because there are electrodes placed all over the body that somehow light up when a nerve is stimulated.  When they find nerves that are connected to the spastic muscles, they snip those nerves with a little pair of scissors.  Then after they are all done, they just put the backbone right back over the top of the dura and - get this - the bone simply grows back together.  They don't stitch or glue it down or anything.  So part of the point of lying flat for three days is to start to give the lamina time to grow back and to make sure the cerebral spinal fluid doesn't leak out.  And also, we have to be careful not to twist her torso in certain directions for three months, because that could mess it up.  She can twist a little herself, because her body will tell her when to stop, but another person cannot twist her.

Tonight she had a bath on a giant blue contraption suspended over a giant bathtub.  She cannot take a shower for two weeks because of the incision.  The nurse who gave it to her said that in three years of working here, Suchitra is the only child she has had who actually fell asleep while she was being bathed.  When she was wheeled back in here she looked exactly like someone who had just gotten a spa treatment.  I'm crossing my fingers that she sleeps well tonight - we both need a better night's sleep.

Tomorrow she has occupational therapy at 8:30 am, and then physical therapy at 11:30 am.  This is a short day because of the Labor Day holiday.  On Tuesday she starts school and a full day of therapy.  I don't really have a clear sense of what that schedule will be like but I am hoping that at some point, I will have enough time to get to a grocery store.

Thanks for your comments, I have been reading them to her and she loves knowing that her family and friends are thinking of her!