Five week post surgery update

A month. I cannot believe it's been more than a month. 5 days and we see the neurosurgeon for Boeboe's 6-week check-up. That's the point where/when I'll believe that this is Boeboe's new normal. Until then, we're just being caustically optimistic that Boeboe's improvements are here to stay. On that day, I'll believe it and be truly happy. Almost there. Almost.

What a few weeks it's been. Boeboe only had one bad day. JUST ONE BAD DAY. WOW. Pity about that bad day though. It caught me off guard and threw me for a loop. It disheartened and saddened me, sigh. I so wish we could just go on as if she never, ever had this problem in the first place. Instead, we need to celebrate the wonderfully good days, and live through the few remaining bad days.

She still does not ever wet the bed anymore. 5 Weeks of completely dry nights. The psychologist said there is absolutely no way that it's all in the mind. The cord had to have been tethered for it to have this amazing physical effect. And the day time accidents had a wonderful respite of 9 days! Then the one bad day where there was 1 accident. And then, again so far, another 7 good, accident-free days. The bad day also saw some of the constipation with encopresis. Meaning, soft pooh passes the hardened impaction (constipation) and spills out into the underwear. Nothing as bad as it was before, she still feels it coming and run. The underwear is just smeared. So still an improvement. And after a suppository, the tummy worked beautifully and we're back to having good days! Unfortunately, we're back to 3 t-spoons of laxette daily for the constipation...:( Pity. She hates the taste of it so much. But as long as it means pooh-accident-free days...who minds?

So all in all, we're still doing extremely good. If we can continue another 5 days like this, I'm going to accept this as her new normal, and work with that. I'll give her another 3 months to chart how much accidents we still have left. If it's enough for her to want to do something about it, I'll ask the pead or urologist for a prescription for the meds (calming the bladder) and try that again. If it doesn't work, I'll take her to the urologist for another round of botox. In the meantime, I LOVE not having to buy nappies weekly! It cost us SO much. Now, I just have to keep on buying nappies for Monkeyman for night time. He's not potty trained at night just yet. He drinks about a liter of fluid every night!!! But NO MORE NAPPIES FOR BOEBOE! YAY!!!!! She's sooooo happy to be like other girls now. She doesn't have accidents at school, and she doesn't need to worry much about it even!!!

We had one rough afternoon last week. When I took Boeboe to her psychologist, she told me that we should think about doing IQ tests with Boeboe because she struggles so much with her homework. :( That's sad. After talking to dh, we both agreed, since it would give us a baseline to measure her growth from now on. She's also going to do some more tests with Boeboe, to see if she can pickup anything else that's up with her. I'll elaborate more on this once we have more detail (towards June). Boeboe's teacher needs us to work harder on Boeboe's maths, since she's now very behind. But I've really concentrate on it this week, and she's made a marked improvement! So there's definitely hope.

We also need to work harder on the reading, but just do not get time! It takes her about 2 hours every day to finish the daily homework. Between that, school and after school activities, the poor child has NO rest. And being only 5-weeks post-op, I feel it's really really unfair so I do not push for anything more, except the maths. She needs to recover from major surgery still! Homework is NOT the most important thing just yet. We'll do some catch-up during the June holidays. And if that means she gets poor marks for this second term, so be it. Her recovery comes first, imo. At least until the 6-week post-op mark.

She also got an oral speech of almost 2 minutes she had to do this week. Get this...the topic was "Is good manners still important in school?" WHAT??? This is 2nd grade...7-year olds, and it's in their SECOND language!!!! (For our overseas readers....her first language is Afrikaans. Our home tongue.) Gosh, she can't even READ English properly, now she had to SPEECH it? I was so upset. But, she did BEAUTIFULLY! Lots of very hard work, but she got it right!! Yay!!! I was immensely proud, and it gave me LOTS of hope and positivity for the future.

The psychologist and pediatrician discussed Boeboe with each other, and accordingly to the psychologist the paediatrician also recommends taking Boeboe to a geneticist. :( I need to make work of this in the coming week. So they (still) suspect that all of this may be due to some bigger genetic defect. So far, I wasn't able to get hold of the geneticist.

This morning Boeboe saw the speech therapist. On Tuesday, we're getting the parental feedback. I'm quite anxious about this, because according to the occupational therapist, Boeboe had huge deficits in understanding of language. Sounded like she may have a processing problem in the brain. This would be very very bad, of course. So I'm on pins and needles to get the results. After that, towards the end of the month, the psychologist is doing the IQ tests. It'll be 2 days, both mornings. The one day she's taking off school the whole day, while the 2nd morning she'll only be off school for about 2 hours. Unfortunately, we have to wait for the results until 7 June. :( Still so far away!

Apart from all of this, it's going well with Boeboe. She rarely complains of pain anymore. If she does, it's more like just a twinge, so I don't give medication. Her first week back at school went without any hiccups. She was tired when I fetched her at 10am (after almost 3 hours there), but she coped well. From last week, she's been back at school full time and taking it extremely well. She had to miss out on a marathon at school though. I refused that she could participate, her teacher totally agreed fortunately. So Boeboe had to sit on the sideline, watching her friends have all the fun. Pity. And sometimes kids would push or shove her on her back, which hurts. Once a boy sitting behind her on the carpet kicked her in the back. :( Broke my heart to hear how painful it was for her.

In any case, physically, Boeboe is doing beautifully. The wound has healed over really well. Just a little bit of swelling left. I'll post some pics later during the weekend. Emotionally, she's doing better. She kept on asking the why me questions for a while, wishing she didn't need surgery at all. But her psychologist is working really hard with her to work through her trauma and emotions. She's worth gold to us, the psychologist. Costing us a pretty penny, but really worth every cent.

I'm a little bit worried about Monkeyman these days. He lies down more again. Maybe it's winter? I don't know. But it's not normal for a 3-year old to lie down after 30 minutes of play, watching his sister and brother continuing play. I don't know. Maybe it's just his personality, but it just doesn't sound right. It doesn't look right. But what must I do? He's been for a check-up and blood tests, and everything was fine.

Mr N is doing well. He's doing good in school. And for the first time since grade R, he has VERY good friends. He's always had friends. But they chopped and changed like a set of clothes. Worn today, discarded tomorrow. It was as if he just couldn't find that friend he was looking for. Now, this year, he has 2 very good, constant friends. It makes him (and me!) soooo happy. The one is actually the very good friend he had all of his grade R. It makes me so mad, this policy of the school to split friends up every year. The teachers go out of their way, to put children in different classes for the next year. WHY? I don't get it. They say it teaches them socialisation and how to adapt and conform and make new friends. It build skills accordingly to them. Accordingly to me, that may happen to extroverts. But to introverts...it breaks their hearts, makes them even more shy, and isolates them. It is SAD. Anyway, Boeboe still plays with her friend from last year (they've also been split, but they meet each other break time outside the classes) and Mr N now made good friends this year, at long last. So I'm so happy about this. And even Monkeyman has a best little friend (my friend's 3-year old).

Two week post surgery update

Well, it's almost 3 weeks, LOL. Our holiday is at its end unfortunately. Tomorrow, it's back to school for the kids. Mr N full time of course, but Boeboe will only go for about 2 hours (instead of the normal 6). I'm fetching her at first break. At least for this coming week. If she tolerates it well, she can maybe start full day next week.

So for the update....it's going sooooo well. I'm still extremely scared to say it out loud. So scared that it will jinx it or cancel it out. I know, silly hey. But it's easier for me to type it out, than say it over the phone. Yes, she's doing really, really well. I still cannot believe it. We've been disappointed so many, many times after procedures. Where you have this anxious waiting period, and then she has an accident. And another. And another. And another. Until you realise not much has changed. The procedure/medication/etc. did not help. Did not work.

This time, I didn't really waited anxiously. The doctor couldn't cut the filum. The operation was a failure. What was there to wait for? Yes, I couldn't help but have a corner in my heart that still held onto hope. That still believed and wanted to have faith. So when she asked to go to the toilet on that first day after she stood up for the first time, I was sooooo surprised and happy. The 2nd time I think I was even more surprised and happily so. But by the 3rd time I think hope blossomed. And then it just continued to get better and better.

No, she's not healed 100%. Unfortunately not. I don't think I really, ever, truly believed she would. But what we got, is so much better than what we had, that I do not even mind. Does that make sense?

So let's put it all out on the table. What we had. And what we gained.

Symptom 1: Constipation
Appeared as a breastfed baby. When she was about 2 weeks old, I noticed her stomach was hard and distended. Rushed her off to the doctor at 9pm the night, and she was diagnosed with being constipated. I was astounded. She was breastfed! Exclusively! Well, no answers from the doctors. Throughout her toddler years, I just kept an eye on this. Coming from a family where we're no strangers to constipation, I never gave it much thought other than keeping Lactulose (Laxette) in the cupboard for when it's needed. She ate lots of fruit and salad her whole life, so clearly it wasn't a lack of that. When she was diagnosed twice with impaction within 3 months from each other, I seriously started to work with her. Understanding for the first time that this isn't "normal" constipation. This was also the time I learned that it could be one of the very first symptoms of a tethered cord.

So where do we stand on this? Well, until before surgery, I gave Boeboe 3 teaspoons of lactulose daily, without it helping much. Since surgery, she needs 1 (sometimes 2) teaspoons of lactulose per day.

Symptom 2: Daytime urinary incontinence
This was and is probably her most severe symptom. I do not know when it started. If I have to guess from her behaviour, this has been with her since at least age 1. Unfortunately, I was none the wiser since she was on nappies until age 3. I potty trained her easily and beautifully. She had 6 accidents on Day 1, 2 accidents on Day 2 and thereafter she was potty trained. Until about a week or so later, when she had a urinary accident. Well, I made none of it and forgot about it. Pretty normal for a 3-year old, not true? So when she had another a week ago, I again ignored it. And the next week, and the next week. 6 Months down the line though, I started getting fed-up with this continuance of accidents. Mostly when she and Mr N would be engrossed in play (or so I thought). So we started disciplining her. We tried shouting, manipulating, awarding, sticker charts, taking toys away, even keeping her and Mr N away from each other (horrible, I know!!!). We thought if she really wanted to, she would stop if she knows an accident would mean not playing with Mr N. We took her to a play therapyst, who 3 months later threw in the towel and said there's nothing she can do to help, it must be physical since all her therapies failed. We took her to the paediatrician, who said nothing is wrong physically, so she must be naughty. Try stronger disciplining. Confusing hey? Then at long last we took her to a urologist, and after another 18 months of searching and trying everything they proposed, we've had the surgery.

So where do we stand? Well, it started with one accident a week, progressed to an accident almost every day, to 3-4 accidents per day, and lastly her being in nappies full time with rarely any feeling or control left of when she needs to go to the bathroom. Now, after surgery, she is back to the about ONE accident a day...:) Some days even NONE!!!!

Symptom 3: Fecal incontinence
Boeboe had ONE fecal accident when I potty trained her. She immediately caught on. In fact, she became hysterical when she had that first and only fecal accident. I explained to her what happened, and what she must do next time so as not to have it in her panties. I should've realised that for a little girl who was almost traumatised by that one accident, she would NOT have done it again because of behavioural issues. So after that one accident, she ran to the toilet like a pro for EVERY pooh. She never again had an accident. Until almost age 4.5. I was very surprised when it happened out of the blue, more than a year after potty training. But, like the experts say, I just ignored it. And the next time. And the next. It started to happen every few months. Then every month. Then every week. I was hands in the hair! No disciplining helped. I pleaded, begged, cried. I encouraged, prompted and pushed. I disciplined and even once told her to wash her own underwear. Nothing helped. Not therapy, not laxatives, not sending her to the bathroom the same time every day to sit for 10 minutes (or even 30 minutes!). 

So where are we now? Almost resolved!!! Well, it's early days. She still had about 3 nr 2 accidents since after surgery. But the past 8 days...nothing! I'm sure we'll still have some in the future. These things take time to heal. Her colon is clearly stretched out of it's limits.

Symptom 4: Feet and legs
Boeboe's grandfather noticed that her toes stepped inwards on her left foot. She was 5 and I was always getting angry at her for not being able to walk a straight line (without realising of course that she wasn't just not paying attention, she really was unable). The orthopaedic surgeon diagnosed her with one leg a tiny bit shorter than the other, the foot turning inwards a tiny bit and her hip coming out at a too-high-for-her-age angle. This all was the left foot/leg. He just kept an eye on it, since it wasn't getting worse and she needed no braces or anything. Around age 6, she started complaining of pins and needles on her left foot, but also sometimes the right. This happened about once every few months, then once every month, and the three weeks before surgery, it happened every day. Also, since around age 3, she would fall constantly. Mostly she stumbled over something that lay on the ground (like a toy), or when she walked upwards on stairs. Sometimes just for no reason, she'd just stumble or fall down. Oh, and the toe-bumps. Just awful. She literally cried at least a couple of times every day because of this.

So where do we stand now? Well, I can only comment on the needles and pins, and the falls/stumbles since the other signs would take time to correct itself. But since surgery, she had not complained even once about pins and needles, nor fell/stumbled even once! No toe-bumps. No falling on the stairs. No tripping over toys. Nothing!

Symptom 5: Night time incontinence/enuresis
This was her most recent and last symptom. When she potty trained, I took nappies away day and night, and was pleasantly surprised at her night time control even at age 3. She never wet the bed. Until about 2 months down the line. Then nothing again for about another 2-3 months. So, from then on (age 3) she wet the bed about 3-4 times per year. Nothing serious, I just ignored it. Sighed, yes, of course. Who wants to change sheets, especially if it woke her and she comes to tell me at 2am? But it didn't bother me nor her much, because she was dry 99% of the time at night. Surprisingly so, given the fact that her daytime incontinence worsened so much. Then, out of the blue in March 2010, when she was 6.5 years old, she had an accident at night. And the next night. And the next. Out of the blue, she couldn't control her bladder at night any longer. From then on, she had accidents 5-6, sometimes 7 nights per week. For 3 months. Then we got the botox and after just 1 accident, it worked for nighttime control! She had it back...:) Unfortunately, as botox goes, it worked out after 7-8 months. So January/February this year, the night time accidents started again. She wore nappies since February, so I didn't check religiously. But as far as I know, it was soon an every night thing. And worse, when she woke up, the need was so big that sometimes she couldn't make it in time to the toilet. And the nappy was too full by that time. You get the picture.

So where are we now? Well, it's been 15 nights since she first went to the bathroom on her own after surgery. And she had 15 dry nights. Whoohoo!!!! The last function lost, was the first and best to regain!! 15 Dry nights. It seems like such a small thing. But to us, it's huge. Very, very huge. She hated waking up in a wet bed. She hated the feeling, she hated the smell, she hated the idea of lying in urine. She hated feeling "unclean". Yes, the nappy took care of that, but of course it wasn't the best solution. So to be dry, is a huge thing for her. She still wears a nappy at night though it's unnecessary. When I asked her about this she said the doctor said the wound must be kept dry, so she's scared she'll have an accident in bed and the wound won't be dry anymore. LOL. It's so cute and logical, that I decided to give her time on this one. There's no need to pressure her, as long as the nappies are dry in the morning, I'm happy...:)

So this all may sound extremely wonderful. And yes it is. But, we're not in the total clear yet. It's early days. Anything can still happen. And, we're not completely OVER all of this. She STILL have accidents. And for the past couple of months, the nappies were quite comfy to me and her, because it meant we didn't have to do any cleanups. And for those who have children, you know how irritating winter and potty training is. And that's where we are now. Pants and socks and shoes and and and. So it's not all over and done and forgotten with now. It's just major improvements. It's not a complete cure. Not by a long shot. But we have hope again. We can breath again. We can fight again! If we have to go the botox or medication route again, we're up for the challenge. Maybe, this time, the bladder is calmer and can give the botox or medication a proper chance of working completely. And maybe, who knows, the bladder can be retrained to go to the bathroom every 2 hours and overcome the last everyday accidents. We're at least so much better off now, than we were 2 months ago. And better off than 1 year ago. A rough guess will be that she's regained 2-3 years of function!! So we're back to how she was around age 4-5...:) I'm hoping for even more improvements, and praying for no regression. But again...if this is what we're left with, then I'm happy, and I'm sure she'll one day be grateful too. Even though she has expressed a couple of times now that she wished she never had this problem, nor needed the surgery. It was allot to handle for a 7-year old!

So here's a photo update.

The wound and pressure sores (and lines!) around 10 days post op. Look at the swelling around the middle of the wound. I worried about that, but the dr said it's fine.

The wound. Quite longer than I thought it would be. Both pressure sore lines can be seen here, on either side of the wound.

The wound at 19 days post op. We've taken the plaster off today. The little thing at the top is an absolvable stitch. I assume where the last little plasters are left, is where the top part of the vertebrae was removed. S1 and S2.

She had a small allergic reaction to the plasters (the redness), so I'm relieved most of it is off now. The swelling is also down so much (just above where the little plasters are). And look how well the pressure sores & lines have healed!

And of course, during this holiday, it was Easter! Though the oldest kids know what it's about, they still enjoyed the hunt for hidden easter eggs. But none as much as Monkeyman did!

Got one daddy!!

Don't worry mommy, I always climb up here on my own.

Just look at the monkey at the back! She just completely forgets about her back and do silly things like that. Trying to get to the easter egg hidden on the basket ball ring.

The moment I saw it, I yelled at her to get down. Gosh, how she can do something like that 12 days post op is beyond my understanding! 

At least they had some fun too during the holiday. I took Boeboe and Monkeyman for a movie as well. Though, I realised too late afterwards that it was a little bit too much, too soon. I gave her some Lotem and asked her to lie down once we got home. The car ride especially was rough on her. Because we had to pick Mr N up from a playdate at a friend's house. Not far, about a 6km roundtrip. But, as I said, it was too much, too soon. So I'm a little bit worried about how she's going to take going back to school tomorrow. We'll see. If it's too much, I'll keep her home for another week. Fortunately it's only a 4-day week due to today's public holiday.

Still going well...:-)

Well, it's been 10 days now. Can you believe it? Suddenly, 10 days seems so short. It passed by so quickly. While in the midst, time drags. But afterwards when you think back, it's all just a blur. I'm grateful it's done. But somehow I'm terrified, because it's done. There's no going back. No changing. No chance for it being done better or different. It's done. Over. Forever. Nothing to hang onto anymore. No hope that things may still change in the future. This...now...is it. Whatever this is, it is it. The end. This is what we have for the future. The good. And the bad. It scares me. It saddens me. But it also fills me with this great, hardly containable excitement. Because, somehow, I still have hope left. I believe that God has given, and not taken away. I don't know why. I don't know how. It blows my scientific mind. It makes me realise how insignificant doctors are. How insignificant mothers are. How insignificant science are. All that matters in the end, is how great God is. Why did He chose my daughter to have an apparrent tethered cord? Why did He chose her to have not the usual, already rare, tethered cord, but an occult tethered cord? I don't know. But even more mind-blowing...why, after it turned out not to be the usual tight-filum tethered cord, does she experience improvement? I don't know. I cannot explain it. Except that God is Good.

Yes, she still has improvement!!! It's precisely a week since she's stood up for the first time after the operation, and been able to go to the bathroom on her own two feet. Since then, she's had 3 wee accidents, and 3 pooh accidents. One day was an overlapping of the two, so it's 5 days out of the 8 where she had an accident. This may sound like a lot to you, but to me, it's a GOOD week.

The best is still the fact that it's been 7 nights now...and every one of them has been DRY. That hasn't happened for months now. Not since the botox worked out. Three months before she recieved the botox in the bladder (13 months ago) her condition worsened to the point where she not only got day time accidents, but also night time accidents. It was a huge blow to her and me. Fortunately, the botox took care of that almost immediately. Unfortunately, the botox only lasted 8 months. Since it has worked it's way out, the night accidents were back in full force and for the 2 months before surgery, she had full nappies every night.

So for her to have dry nights, is absolutely mindblowing if the surgery was a failure. To me, it means only one thing. Surgery was NOT a failure. How...why...I don't know. All I know, is that people from literally ALL over the world prayed really hard for my little girl. People that knew her, and people that has never met her.

They say, with a tethered cord, you get back the function which you lost last. The function that was lost in the beginning, may be the last/most difficult to get back. Usually, that function is lost forever. In Boeboe's case, the very last function that she lost, has been the night time bladder control. And now, it seems, she has it back.

Another sign of successful surgery is that during our holiday in the month before surgery, Boeboe has complained nearly daily of pins and needles on the top of her left foot. Well, since surgery, she hasn't complained of this even once. When I queried her, she said it's gone. Completely, and she hasn't felt it at all. Isn't that just fantastic?

Maybe it's too late for all function to be regained. I accept that. The doctor warned us before surgery that that's most likely the case. But if we can just have what we have NOW. At this very moment. I'd be happy. I'd be extremely happy, satisfied and sooooo very grateful. Because as it is now, is acceptable. It's livable. It's something she can and will be able to handle. Yes, it's not perfect. Yes, it will still cause her heartache. Yes, it would still mean tests and procedures and doctors and hospitals and anaesthesia and botox and and and in her future. But. It's sooooo much better than 2 months ago. What we had then, was a complete nightmare. There was nothing. No function. No feeling. No control. ANYTHING is better than that. And what we have now, is so much better than just "anything". It's invaluable.

So is this permanent? I don't know. I'm scared to say either yes or no. I do not want to make any predictions. I just wanna pray and hold onto hope and faith. Because it's been so good. So very very good to live through this week. And to believe that this will be the future. The future seems so bright! So happy now!

So...for the last bit of great news. Boeboe didn't wear a nappy today!!! She had normal underwear on...:-) She was so excited when she agreed to it this morning. And it went PERFECTLY! Yay!!!!!!!!

Now...just for a few photo's from her time in hospital. The quality isn't the greatest, it was taken with my and hubby's cellphones.

The night before surgery. Settling in hospital. Holding tightly onto Lilly, her doll.

Shortly before surgery. In her theatre clothes.

About 3 hours after surgery. Starving, so she ate a toasted cheese sandwich.

Some friends of mine send us some beautiful gifts. These are the ones for Boeboe. She was thrilled!!

The wound. Her buttocks is to the left.

First time out of bed on Day 4.

The big teddy bear mommy and daddy gave her. She called him Bambi.

The cut after the plaster was removed (they covered it with another shortly hereafter). I guess the cut is about 11cm long.

Looking closely, you'll notice a brown line on the top part of the photo (buttocks is to the left). This is her pressure sores. There's 3 darker round marks which were the sores I worried about. This pic has been taken on day 8, 5 days after she started walking around and the sores started to heal, so you can imagine how it looked around day 3! The brown lines and 3 sores is still visible on her back, even after 10 days now.



Released from hospital! She was just so happy, and chatted all the way to the car...:-)





I'll take a few more pics later in this week, of how the new plaster looks, how the pressure sores are healing and when the plaster is off, how the wound is healing.

We're home!!!

We were released this morning, yay!!!! I'm so happy to be home. No more hospital food, hospital noises, hospital smells, taking stats, sleeping in lazychairs, driving to and fro, packing clothes and sandwiches, saying goodbye to the boys, and so forth. Thank goodness, it's over now. We've done it. We got through it. I can't believe it took 8 nights in hospital in the end. Wow. Exactly the same time she spent in NICU when she was born. Feels like a lifetime ago. Somehow this week felt longer than that one did.

So Boeboe is doing good. The doctor took the plaster off, and declared her wound is healing very well. They put another plaster on which has to stay on and clean and dry for another 10 days. And then we have to see the doctor again after 6 weeks. The sister first wanted to put a 5cm long transact plaster on. She looked at the wound (probably about 10-12cm long) then at the 5cm long plaster, and said she'll just stuck it over the middle part which still had some of those strips over. They cut from the L-vertebrae down to the bottom S ones, but only S1 and S2 were opened up (and that's where about 3 or 4 strips are plastered on - very bloody underneath, ouch!). Anyway, so she planned on putting this plaster halfway over a healing cut! I freaked out!! She got another nurse to fetch her a longer plaster, but it's a really pathetic piece of plastic. It's already loose on the one side. So I'm going to Dischem tomorrow to buy a proper, neat, good one that can keep another 9 days.

Mr N is ill...:( MIL brought a cold with her, shame, and I guess Mr N got it from her. Monkeyman also sniffed a bit tonight, so I'm praying that he won't get ill, and that Mr N will get healthy soon, but especially that Boeboe won't get it from either boys or MIL. Can you imagine how horrible that will be ontop of her recovery, shame.

I'll never forget Monkeyman's face when he saw me and Boeboe walked into the house this morning. His little face broke into this huge smile, he jumped up and down in joy and then ran into my arms. Ahhhhh.... And then he hugged Boeboe. Tenderly, because I immediately warned him to be careful of the big "eina" on her back. She loved being home. She lied down for quite awhile this morning, drinking lots and eating better than she had in DAYS. I knew once she's home, she would be fine with food and drink again. After a while her headaches seemed better, so she stood up and played a bit with Monkeyman. Though, I think she overdid it a bit, because after a while I could see the pain and exhaustion in her face. I gave her some myprodyl and made her a salad (her favourite). She was so happy to crawl into her own bed tonight. And fell asleep almost immediately, poor thing.

Unfortunately, she had a nr 1 accident in the nappy while playing with Monkeyman tonight. It saddens me. I've been so hopeful, but what if I were wrong and it was just a combination of some things that caused the improvement of symptoms? Things like the fact that she wasn't drinking much, so obviously not producing enough urine, having nothing to do in hospital - no one to play with, being asked regularly to go to the bathroom and her lying down, not walking around, so less pressure on the bladder? Urgh, I don't know. I'm just worried tonight, but we'll see how it goes tomorrow. 3 Accidents in 5 days is still good. Still an improvement. I'll still take any improvement I can get!

Tomorrow is Easter Friday. And with a nice coincidence, there's a few public holidays falling together next week. So schools have closed and my hubby took a few days leave. So we're all on holiday at home for the next 11 days. I'm so happy about it. We all need to relax and rest a bit.

Day 7

Yeah, we're still here. *sigh* We loved it so much in hospital, we begged the doctor if we can stay another night. (note the sarcasm, hahahaha)

Well, the doctor couldn't make it to his rounds this morning because of an emergency theatre case. So he only came tonight. He said that he can't let Boeboe go yet, but tomorrow morning he will take the plaster off and check the wound. If it looks good, we're good to go. Yay!!! Please please please don't let there be another emergency theatre case! Then we can be home before Mr N's school comes out for the easter break (at 11am). It'll be great if I can go fetch him. When school comes out early for a holiday, it's absolute chaos with all the parents and everyone is in a hurry, etc. I don't want the grandparents to experience that if they don't need to.

So ya, our Boeboe is looking good. But man oh man oh man. Sometimes I can just strangle her! She's being such a baby tonight. And no, please don't tell me after the week she had, she's allowed to. This behaviour has always been there, and just got worse and worse over time. So it's "normal" for her, nothing out of the ordinary because of the surgery. I had to beg, bribe and threaten my way through giving her lunch, medication, the nurses taking her stats, toothbrushing, drinking her reflux pill, etc. Urgh! My 3-year old doesn't even behave like this!

Anyway, sorry for the mini-vent. Physically, she's doing superbly. Still on meds, but just twice a day. Her pain is minimal. She still gets the awful headaches when she walks around, but it seems to be improving slightly, so the doctor says it's not a CSF leak then. Yay!!! She's very very scared of the dr taking the plaster off tomorrow, and to be honest, I'm too! It's going to be one long screaming/crying/fighting session and I'm so very tired of those. I'm emotionally drained. I need a good night's solid 7-hours sleep. Preferably more!

Speaking of which...there's this little irritating circular downlight right next to Boeboe's bed. Exactly where the lazychair is. Do you know how irritating it is to sleep in the spotlight? Well, that's how it feels, LOL. I've taped a tissue over it, hanged a towel, etc. Well, tonight I made a whole device out of the oxygen tank and pipes with the towel. It seems MUCH better. So here's to a hopefully better night...hahahaha. Our last! (Please let that be true?!)

It was such a busy day today. Woke up early, of course, this being a hospital where they think 5am is a good time for little girls who had major surgery to wake up. Neither of us were ready, so we snoozed for another hour. I then got ready for the day, thinking that the doctor would be here at 6:30 like always (gosh, but he has a long day, poor man!). So I waited and waited. At 9:30am I realised it's not happening, so I got hubby to phone his office. They told him about the emergency theatre early morning (wonder if it was a car-accident or what?) and that he'll only do his rounds in the evening. So hubby got the in-laws to come to hospital again around noon. I took Monkeyman home to do some quick clothes washing and then went to Mr N's school. We sat in the car chatting and eating sandwiches until it was time half an hour later for him to go to his chess class. So me and Monkeyman went home again for about 55 minutes. Which I used to bath, pack another night's clothes, make myself dinner (sandwiches again, blegh), got some cooldrinks for me and Boeboe and then got poor Monkeyman in the car again. (He sat in his carchair for 7 trips today!!! Poor thing). We picked Mr N up from chess and came to the hospital so that Boeboe can see both brothers for a change. Then the grandparents took both boys home, and me and hubby spent some time chatting next to Boeboe's bed. Was nice to have a coffee together, and not just say hello and goodbye in the passing!

Hubby went home to spend an hour with the boys, and I played Uno with Boeboe for a while. Now, she's sleeping peacefully and I can relax, knowing that this is hopefully our last night in here. I'm almost happy that we didn't know how long it's going to be in advance. The thought of spending 8 nights in hospital would've been enough to depress me. I simply cannot wait to sleep in my own bed, hug Monkeyman whenever I want to, joke with Mr N and not be so short-tempered because of lack of sleep, and eat WARM food. Not live on sandwiches and coffee. Yes, I could've bought myself some hot food from either the food kitchen or the cafeteria. But none of it is MY food. I'm such a fussy person. I'd rather eat a sandwich than eat a plate of food I do not like or enjoy. I want MY food. Chicken curry...lamb neck stew...smoked pork ribs....spaghetti bolognaise...aahhhh. Guess what I'm dreaming about tonight! LOL.

Day 6 - evening

So it went well the rest of the day with Boeboe. She kept complaining about headaches when she stood up. I took her for a shallow bath late this morning. She got all clammy and shaky after a while, complaining of the headache getting worse. I remember the feeling...I had epidural headaches after the birth of my first son, and it was absolutely terrible. So I really have alot of sympathy with it.

Boeboe's grandparents came to sit with her for the afternoon, while I went home with Monkeyman and fetched Mr N from school. After lunch I took him to recorder practice. I bathed Monkeyman (first time in a week! Felt good). Then we played ball waiting for the grannies to come home. My hubby went to relieve them at the hospital. When they were home to make dinner and watch the boys, I took off, back to the hospital, so that my hubby can have an hour with the boys as well before their bedtime. It's not easy now that he's back at work. Fortunately he has a little holiday coming up, just 2 more working days. But I'm hoping that we'll all be home by then.

It was great to play ball a bit with the boys tonight. We laughed and it was wonderful to see them happy again, and not stressed out, sad or confused.

Shame, the kids are also really missing each other. Monkeyman kissed Boeboe's arm the minute he saw her. It was the closest thing to him, so he just fell away, kissing her arm. So sweet. And again when we went home. Tonight Boeboe said "I'm missing my Mr N. I want my Mr N." Because he was in school around noon everytime when the grannies brought Monkeyman to hospital, Boeboe and Mr N haven't seen each other for 3 days.

So let's hope they can all see each other tomorrow. If Boeboe can be released from hospital. Holding thumbs!!

Day 6

Part of the furniture. That's what we're becoming, LOL. Still mostly all alone in the 5-bed ward. Massive private room for normal room tarrifs, hahahaha.

Dr was here this morning, and we're not being released...:(  He says that during the operation they tap some of the spinal fluid (CSF). This is now causing her headaches. He wants to keep an eye on her for another few days in the hospital, until the headaches improve. I guess the brain will have to manufacture new fluid to replace what she's lost. How long would that take? I hope not too long...I'm so tired of the hospital.

And I think Monkeyman is getting angry at me. I once read an article which explained that children do not understand why their mothers would "desert" them. So they show their displeasure and heartache by being mad at her. Shame, poor boy. Though, somehow I do think it may be doing him just a little bit good as well. To realise it's not only mommy that can wipe your bum or bath you or prepare your porridge for you. That it tastes just as well if grandma does it and that it's just as good if daddy soothes you when you wake at night. I think it may teach Monkeyman some much needed independance from me.

So Boeboe is doing very well. She walks around just fine. She's in no pain at the moment - had medication 5 hours ago. She's getting bored in her bed, and no nausea anymore. If only the headaches would stop, I'm pretty sure she'll be released. But the moment she stands up to go to the bathroom or take a stroll, the headache starts and she climbs right back into bed.

Now, for some really positive news...:-) Boeboe has been walking around for 48 hours. In that 48 hours, she had one accident. She did call me but I was taking too long. Since then, for 36 hours...NO accidents! Even nr 2 is in the toilet! And dry nappies for 2 nights in a row now. Is that even POSSIBLE???? I'm absolutely stunned, amazed, hopeful and soooooo scared that it's not gonna last. We've had so many, many dissapointments. I don't think I can live through such a huge one. Not this time.

So I asked the doctor...if the operation was basically a failure because he was unable to cut the filum, why would she have such major improvements in such a short space of time then? He said that maybe the filum WAS tethered to a tiny bit of the dura, and with cutting it open it did come loose. You never know! We'll have to see and be positive. But he says it does sounds good.

So...being cautiously optimistic here, and praying VERY hard!

Now...I know that some of you would immediately think...isn't it just psychological? Maybe, who knows? But believe me, we've been through some procedures where we ASSURED her that THIS IS IT. THIS is going to stop the accidents. And then...without fail up to this point, the procedure, medication, etc. would fail. So no, in my opinion, the current improvements ain't all psychological. Because then it would've happened with one of those procedures/medications as well, wouldn't it? At least for a while. But it usually failed quite spectacularly, quite early on in the game.

I'll probably give another update tonight, since all I have to keep me busy here at the hospital, is my book and my laptop, LOL. And uno cards that I play with Boeboe.

Day 5

And another eventful day. Will our lives ever be calm and peaceful again? LOL, I can't wait!

It started off with the doctor visiting extremely early (6:30am) already. Declared his satisfaction with Boeboe's recovery. But that he needs her to stay 1 more day. Tomorrow he wants to check her wound.

Half an hour later Boeboe said her head hurts. We stood up to take her to the bathroom, and she complained that the headache is worse. About 30 minutes later, she vomitted. Violently. We cleaned her and the bedding, and she was fine for almost 2 hours. Though, she refused to eat. She did drink a bit though. She just lied down horizontally, because she kept on complaining about her head.

Then she started throwing up again. After 2 hours and too many bedding and pajama changes, I asked the sister to please call the doctor. He prescribed something over the phone, which the sister wanted to give via an IV line! I flatout refused, and said it will be too traumatic for Boeboe, and "in any case I don't think you're going to be able to pin her down to get it in", hahahaha. Sorry, but I just thought how silly of them to want to put a drip into a child's already blue hand just for some medication??? So they changed it to a melt-under-the-tongue tablet, and it worked beautifully! She stopped vomitting, and even drank a few sips of tea during the afternoon.

I went home around noon, while my parent in laws sat with Boeboe in hospital. Monkeyman was soooo happy to have me home. We then fetched Mr N, and he was also really happy to see me. I spoiled them with McD's, and we sat eating together, just chatting about everything and anything. Then I did Boeboe's washing, took a bath and packed my clothes again. Wrote out directions for the in-laws to take Mr N to his recording practice after school tomorrow.

By that time it was 5 in the afternoon again, so off I went. Hubby already relieved his parents at hospital, so they looked after Mr N and Monkeyman at home, waiting for hubby to come home for dinner. When I got to the hospital, the peadiatric neurologist has been here already and did his evaluation with Boeboe. I'll do another post in a few days time about that. Suffice to say that I'm (again) mad as hell at this man. Pardon my french, but there's no soft way to say it. He basically, again, said that Boeboe's still lying. Like he thought 15 months ago. After the bloody darn difficult year we had, and the amount of function she has lost, he actually still think she's lying. I simply cannot even wrap my head around his thinking. This is the same little girl that told me things like the following during our 3-week holiday last month:
"Mommy, I wish I didn't have this problem in my back"
"Mommy, I wish I was like other little girls"
"Mommy, I wish I didn't need to wear the swimmers nappy underneath my costume" (She was highly embarresed by this).

I won't go into more detail about the neurologist visit now. I know you're all curious, so I'm really sorry. But I'm just so tired and it's late and I had a looooong day. I will get to it hopefully in the next few days.

Boeboe went to the bathroom ALL day long!!!!! Well, only about 3 or 4 times (she's dehydrated from the vomitting). But still...a dry nappy now for 24 hours!! Whoohoo!!!

She had a relaxing evening, just kept on complaining about her headache. Got some morphine around 8pm, complained about being nauseous but didn't throw up. And now she's sleeping soundly next to me (I'm on the lazyboy, tapping away on the laptop, LOL). So hopefully, if all goes well, tomorrow she will be released!!! I'd be so happy.

Day 4

What an eventful day!!! My hubby stayed over with Boeboe in hospital yesterday night, so I went home with the boys. I slept in a bit this morning and then first settled the boys with breakfast and with the in-laws at home, before I came to the hospital. So I missed the neurosurgeon and pead's visits. But, hubby says they're both happy with Boeboe's recovery and neither one knew what's causing the rash. It hasn't dissapeared, but also hasn't gotten worse. Still on the back and chest and stomach areas. Still light.

Boeboe's pressure sores have started to heal!! Yay! I was so happy to see that. Her back and bum is still very red of sitting/lying all day, but it's looking much better than yesterday. Her foot is also fine today!!! The pain in her leg and foot is gone, and she was/is able to move her ankle upwards!!! I was soooo relieved when I saw that. My guess would be that the nerves got "injured" during the operation, probably just didn't like to be moved out of the way, LOL. And that caused the pain in her leg, and the inability to move the ankle. So once it had time to recover, she got function back and the pain dissapeared.

I gave her a good wash this morning, put clean pajamas on her, and demanded some painmeds for her (which they shockingly haven't given her for 14 hours!!! Their excuse was - she looked happy and didn't complain. HUH???). Around lunchtime, me and my sister helped her off the bed. I was quite surprised that Boebe was, though reluctantly, willing to try. She was shaking like a leaf, and her legs were a bit weak in the beginning, but once she was able to stand on her own, she loved it! Didn't want to sit down again. Just stood and stood and stood. Then, demanded that she wants to walk. So I allowed her to walk out of the room to the corridor and back in. Yay!!! She still refused the bed, so I let her sit on a chair while they changed her bedding. Then she got a blinding headache, so back into bed she went happily. Got some painmeds and after an hour's rest she looked so much better. When her grandparents, father and brothers came to visit, she gave them a show of her walking again! She wanted to do more, but after the headache of earlier, I decided not to push it too far again. Then, about 2 hours after that, the nurse asked if we should change her nappy, so I felt it and it was dry. Boeboe then said she needed to wee! And that she wants to go to the toilet!!! I was almost in tears. Helped her off and she went to the toilet! Double Yay!!! I know, I shouldn't put too much into the gesture, but gosh, I so much wants to believe it's the first of some improvement! Even though my logical, scientific mind knows there won't be any improvement. I just can't help but hope against all odds. And believe in miracles!

Tomorrow morning the neurosurgeon is getting the neurologist to come speak to us. If he can get it organised in time, I guess we could be going home thereafter! Else, if it's only happening Tuesday, we'll have to stay another 2 nights. Gosh, I'd be soooo happy to be home again with ALL three my children. Though, the in-laws are really looking sooooo well after the boys. They don't lack anything, and gets spoiled rotten with love, attention and great food. And they bring the boys to visit every day, which means the world to me, Boeboe and both boys. Monkeyman's face just lights up when he sees his beloved sister. He doesn't even mind me much, just have eyes for her. It's so precious to see.

So, today it's all good news! Only "bad" thing today is that she threw some spectacular tantrums, and had quite a few crying fits. For absolutely no reason at all (well, in our opinion it's no reason to cry!). But I guess it's normal. She's tired, had a very taxing day and she wishes she could be home with her brothers. Hopefully tomorrow.

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.