Day 3

What a long day. Boeboe is doing well. Slowly, but surely, she's getting better.

She's still in alot of pain. They're still giving morphine, which really helps. She's refusing to move much more than her arms and legs. So her back is all red now, and has some angry-looking little pressure sores on the one side. Her heels are doing better now that she's moving both legs, and her elbows are also better. It's just the back that's a worry.

She also developed a rash on her torso, which they're keeping an eye on. The nurse said it may be viral. I'm thinking more in the lines of an allergy. And wondering if it could even be bacterial...?! I don't think so, she was on antibiotics until this morning. So a total of about 48hrs.

Her drip and catheter came out, yay!! The neurosurgeon wanted to keep it in another day, since she's rather imobile, but I told him the catheter is really hurting and bothering her, that a nappy would do the job just as well. And since her painmeds were given orally now, she also didn't need the IV anymore. Unfortunately, both were extremely traumatic for her when it was taken out. She screamed and cried and yelled and cried some more. It was terrible to see. I cried with her. The plasters hurt her the most of the drip, and for some reason taking the catheter out was very very sore for her. I don't know why?! At least, both are out now.

Then she had to get new clean sheets, so she cried some more because they had to lift her. And again she cried when her pressure sores were rubbed with cream.

Shortly thereafter, her psychologist came to visit (isn't that the sweetest thing?). After seeing how much pain Boeboe still has, and how worried I was that the doctor wanted her to sit a bit today, which seemed like an impossible task with a child in that much pain, the psychologist told the nurse that as Boeboe's doctor, she wants to minimise emotional trauma, so we need an adult bed that can be lifted to let Boeboe sit upright, without Boeboe needing to do the work. The children's beds cannot do that. So off the nurse went and came back with an adult bed...:-) Boeboe screamed and cried when she was moved to the new bed. But once the head of the bed was lifted a bit, she did feel better in her almost sitting position and was then able to play a few games with her cousin that came to visit.

She had quite a few visitors over the past few days. Her face just lights up when her baby brother comes, and he just wants to be close to her. Sits next to her on the bed, looking adoringly up at her. It really meant the world to both of them to see each other. I never realised exactly how much they love each other until this past few days. Mother in law calls them "the twins"...:-)

Yesterday evening, I spent with Boeboe at hospital. It's not an easy stay. You get a lazy-boy to sleep in next to her bed, and gets woken up for so many things. When she needs meds, when her vitals gets check, when they come to rub her pressure sores, when she wasn't producing urine and needed to be forced to drink something, etc. So tonight, her daddy is staying over at the hospital, while I came home to spent some time with the boys. They really missed me, and Mr N was in tears today. So I played a bit with them, cooked them something, etc. Just a bit of normalicy in their lives. Hopefully tomorrow I can then spent most of my time at the hospital again, while daddy stays with the boys. We're very lucky though to have the in-laws with us. They look after the boys so well. Driving Mr N to and from school, giving them meals, playing with them, etc.

There was a bit of a worry with Boeboe's one leg. Her left leg was fine from the beginning. But her right leg is/was very painful. First, it was so bad that even if we touch her leg, she would scream the house down. It got better, but it's still painful. Her foot is the worse. The upper leg is now much better. The other problem was that she couldn't lift her toes up towards her knees (bend the ankle upwards). She could point her toes downwards, but not upwards. Until tonight. Her daddy got her to move the toes upwards. I'm so happy about that, I was really stressing that it may be damaged from the operation.

The neurosurgeon came to visit her again today, and when I asked him, he said it really is very unlikely that the cord was tethered at all. Since the filum was so thin. Usually, it's thickened when tethered. So there's not much hope for us to go on, that we may see any improvement in her symptoms. I can't believe that all we gained from this, was to learn that she definitely did NOT have an occult tethered cord. It's still too much for me to take in. Too much anguish. Too much guilt. Too much worries.

The nsg said he now wants to refer us to his collegue, the peadiatric neurologist. We saw him 15 months ago, but Boeboe's symptoms were less severe. So he laughed at me then (last January), told me Boeboe is lying and just naughty for not running to the bathroom in time. He also laughed at me and argued with me about how much function her anal sphyncter had. So I'm a bit reserved to let him "judge" me and Boeboe again. But he really is a very good neurologist, and we do need help. And I'll swollow my anger and pride to hear if he has ANY idea what now. The nsg said something else must be wrong, and we need to look for it. And starting with the neurologist is our best bet. Unfortunately he's away for the weekend, so we'll only be able to see him on Monday when he comes to do his rounds. Thankfully, the neurosurgeon will ask him to come and see Boeboe. I don't think I would've been able to get that much over my humiliation, to crawl back to him. But if a doctor asks another doctor for his opinion, I'm all for it.

The nsg also said that hopefully, after seeing the neurologist, we can go home on Monday. But, we had to get Boeboe to sit upright a bit today. We achieved that, so I'm happy. Tomorrow, I guess we'll have to get her walking, before she'll be allowed home on Monday. So wish us luck! It's going to be soooo difficult, with a child that resists us every step of the way. From taking medicine, to being turned on the side for the pressure sores treatment, to taking the plaster off her drip, to eating something, to drinking, etc. It's so difficult to keep a balance between being sympathetic because she's in pain and having a difficult time, and getting impatient because she's being needlessly (in my opinion!) difficult and stubborn.

So that's day 3. I now desperately needs to get some solid, uninterrupted (hopefully, if Monkeyman allows me) sleep to be able to cope with what tomorrow will bring.