I can't believe it's almost Christmas!! Where has the year gone by?
Our holiday has been everything but relaxing and quiet! I was looking forward to the rest so much, but alas. We fitted a few visits in with friends, which was very nice, but took up a day every time. So about a whole week went past that way. We also had numerous doctor tests and check-ups. Then we had a few quiet days before we took the kids to their grandparents for 4 days. And every day for the first 3 of that, I spent in the shops trying to find the right gifts for each child. Gosh, it was busy! Poor Peanut got so tired of hanging out in the shops. And when at home, she missed her siblings, so it wasn't the best of weeks for her. Or us!
We've never been the parents that wishes for a break from our kids. We get it, that others do, but personally, being separated from them, isn't how we prefer spending our time. Not even a day. We give every child (except those under age 3) the choice if they want to go or not, and how long they want to go. They have to come to an agreement on the how long though. All 3 the eldest ones choose to go every time, because they have an exceptional relationship with their grandparents. They absolutely love going. They get spoilt, played with, get given all their favourite meals, there's a swimming pool, etc. What's not to love?
I was, like always, a little bit worried about Monkeyman. Not only is he only 6, but he is still quite attached to us. So he does cry for us at times, and that makes me sad. But he wants to be there, and I believe it's good for him at this age. To learn that he CAN cope without us. I was also worried with his tiredness issue. Seems like he was okay though. He's just extremely pale, and definately more tired than when I sent him there. So he didn't get enough rest. Probably because they swam so much, played so much, and had so much fun. He got a nice tan all over his little body, which is why I noticed his pale little face immediately. It was in stark contrast to the rest of his neck and chest. It got even worse after they had another, last swim for the day, but much better again by this evening when they've relaxed in front of the tv for an hour once we were back at home.
Poor Boeboe is also not doing so well. She's very withdrawn the past few months. I need to connect with her again to hear what's up. Her medication isn't working completely, so I need to keep tabs on that as well this holiday. I feel so sorry for her. It was bad enough going through this loss of bladder function when she was age 6 and 7. Now, at age 11, it is much, much worse. :-(
Apart from these issues, it's going well with all of us. :-) We're happy, together, mostly healthy and looking forward to an enjoyable and beautiful Christmas with both sides of the extended families. Can't wait!!
Sunday, December 21, 2014
Sunday, December 14, 2014
Good news!!
So why do I feel so flat? So sad?
It's been a very tiring week. I took Monkeyman to the hospital for his blood test, just to hear that they need special tubes for it, which needed to be ordered first. So next day, we had to go all the way back. He was amazing, like always! No tears, no fears, no tantrums or backtracking. Just being brave. He climbed onto the bed, stuck out his arm and didn't even said "ouch". And it was quite a bit of blood.
Three weeks ago when the cardiologist told me that we needed to take Monkeyman for this bloodtest, she told me "if it's negative, we'll go forward with the muscle biopsy in any case". She actually repeated it twice, as if to make sure I know where we stood.
Guess what? The blood tests came back today, she phoned me with the results. It was negative!! I wanted to scream yay after our conversation ended!!! But I just felt flat. Flat, and sad, and frustrated, and so very, very, very angry.
Because I asked her, "so are we going to do the muscle biopsy next?" Guess what her reply was... "No, it's not indicated. Mitochondrial disease is not indicated."
Oh. OK.
So what now? Well, on Thursday, when I picked up the blood test form at her office and she asked me how it's going, I told her it's really not going well. That he is extremely tired and that I didn't realise that the vitathion had such a huge impact on him. So after saying today that we don't need to do the muscle biopsy, she told me that we should put him back on the vitathion, the Q10 and the carnitine. "Because if it helps him so much, why not?".
Uhm. OK. So if my son have a constant high fever, let's give him paracetamol "Because it helps him so much!".
What about looking for the CAUSE first, or at least while treating the symptoms???
Argh man, I'm so angry. So so angry. How can there be no one that follows through for us? Every bloody darn time we find a doctor that promises us the world, but when it comes to it, they just drop us. Why why why? This isn't the first time this doctor (a cardiologist) has let me down. It's also not the first time that she said that if xyz, then we do abc. And then when xyz happens, she backtracks and says "abc isn't indicated/necessary". Like when she said if his bloodtests showed low lymphocytes for a third time, we should go to his pead. And when it did, and I asked: "so should we go to the pead now", she replied angrily: "I AM a peadiatrician myself!". And like when there was something up with my son's lungs. She noticed it on the x-rays, but instead of following through, she just kept on repeating the x-rays ("because it's cheap and non-invasive") THREE times! Every time getting the same result. It took a pulmonologist to immediately realise that he's inhaling his stomach acid, causing reactive airway disease in especially the right lung. Even the 2nd cardiologist we saw, looked for 2 seconds at the x-rays and claimed: "There's nothing wrong with his lungs!". The pulmonologist heard the cracles through her stetoscope, saw it on the x-ray and picked it up from the lung function test. The numbers were clear on that.
So what to do? This cardiologist has now at least 3x backtracked and not followed through on her own plan of action. My husband says we should phone her again on Monday, and tell her that we're not satisfied being left in the lurch. That it's clear there's something very wrong with our son, and that we know from reading up on it, that the blood test is NOT a particularly good indicator of mitochondrial involvement or not. That a positive can be taken as a positive sign that something is up (several causes for it though) and a negative is indicative of nothing. It does not exclude mitochondrial at all.
But I feel like we're done with this doctor. I'm done with someone that backtracks every time, and never follows through. I can't do this anymore. So I want to go to his peadiatrician, and beg her to please run with this. And not leave us hanging. To please please please help. Because our son is suffering and we're worried and stressed and feeling sooooo alone.
When I look at my son, I can just cry. The difference between what he was on the vitathion, and what we have now is so clear. So obvious. If there was ever even a thread of doubt left that there's really something wrong with him, it's gone. I know there's something wrong. And I want them to find it and fix it. He's suffering, and how is it okay to leave a 6-year old suffering??? How can this whole damn situation even happen??? How how how? You see your child is ill. You take him to the doctor. He gets diagnosed. He gets treated. That's how it works, not true??? How can they just leave him be like this? How can this cardiologist think it's ok to just treat the symptoms with a cocktail of vitamins, without continueing to look for the cause?
The past month, he has been constantly tired, he had fever 4 times, he threw up one day, he has tummy aches constantly (daily) that drives him to tears, he had chestpain so badly for about 3 days that he couldn't get up on the barstool one morning or done much more than just sit or lie down. His legs and feet sometimes pain so badly, that he's crippled for a few minutes. He's anxious, unhappy, and sad. He's in pain, he can't do what he wants to because he's too tired. When he (or me) pushes himself to do something, he turns pale. His eyelids constantly hangs at halfmass. He has circles under his eyes. Even other people has now noticed that it's going badly. And this all after being on holiday for almost 3 weeks!!
Argh!!! But no, let's just throw vitathion at him, "because it helps him so much"!!
Should we do it? Give him the vitathion to at least give him some relief? Because seeing him suffer like this, it's eating away at us. It kills us. But what if next year, the next doctor says "oh, he needs a muscle biopsy", and then he has to be off it for 3 months again to do it?! What then... do we put him through this torture AGAIN, all the while when he's starting grade 1? How can that be fair to a little boy?? He's already suffered 1 of the necessary 3 months without the meds. Shouldn't we stuck it out, just in case they still want to do the muscle biopsy?
Man, I can just cry and cry and cry. We started this road so long ago, our goal was to fix it before grade R. Then, we made it our goal to fix it before grade 1. That's next month!! I can't do this anymore. I really can't. I don't cry easily, but today, I just cried. I wanted to be happy because the blood test was negative. But instead, I just cried.
On a more positive note. The kids passed!!! Their hard work paid off. They did really well, and we're super proud of them. Monkeyman too. He did exceptionally well, he's such a bright little boy. So we're all moving over to the new school, and they're starting grade 8, 6 and 1 there mid-January. Now... we're going to relax, enjoy the holidays and try to get rid of all this stress we were all living under. Upwards and onwards!!
It's been a very tiring week. I took Monkeyman to the hospital for his blood test, just to hear that they need special tubes for it, which needed to be ordered first. So next day, we had to go all the way back. He was amazing, like always! No tears, no fears, no tantrums or backtracking. Just being brave. He climbed onto the bed, stuck out his arm and didn't even said "ouch". And it was quite a bit of blood.
Three weeks ago when the cardiologist told me that we needed to take Monkeyman for this bloodtest, she told me "if it's negative, we'll go forward with the muscle biopsy in any case". She actually repeated it twice, as if to make sure I know where we stood.
Guess what? The blood tests came back today, she phoned me with the results. It was negative!! I wanted to scream yay after our conversation ended!!! But I just felt flat. Flat, and sad, and frustrated, and so very, very, very angry.
Because I asked her, "so are we going to do the muscle biopsy next?" Guess what her reply was... "No, it's not indicated. Mitochondrial disease is not indicated."
Oh. OK.
So what now? Well, on Thursday, when I picked up the blood test form at her office and she asked me how it's going, I told her it's really not going well. That he is extremely tired and that I didn't realise that the vitathion had such a huge impact on him. So after saying today that we don't need to do the muscle biopsy, she told me that we should put him back on the vitathion, the Q10 and the carnitine. "Because if it helps him so much, why not?".
Uhm. OK. So if my son have a constant high fever, let's give him paracetamol "Because it helps him so much!".
What about looking for the CAUSE first, or at least while treating the symptoms???
Argh man, I'm so angry. So so angry. How can there be no one that follows through for us? Every bloody darn time we find a doctor that promises us the world, but when it comes to it, they just drop us. Why why why? This isn't the first time this doctor (a cardiologist) has let me down. It's also not the first time that she said that if xyz, then we do abc. And then when xyz happens, she backtracks and says "abc isn't indicated/necessary". Like when she said if his bloodtests showed low lymphocytes for a third time, we should go to his pead. And when it did, and I asked: "so should we go to the pead now", she replied angrily: "I AM a peadiatrician myself!". And like when there was something up with my son's lungs. She noticed it on the x-rays, but instead of following through, she just kept on repeating the x-rays ("because it's cheap and non-invasive") THREE times! Every time getting the same result. It took a pulmonologist to immediately realise that he's inhaling his stomach acid, causing reactive airway disease in especially the right lung. Even the 2nd cardiologist we saw, looked for 2 seconds at the x-rays and claimed: "There's nothing wrong with his lungs!". The pulmonologist heard the cracles through her stetoscope, saw it on the x-ray and picked it up from the lung function test. The numbers were clear on that.
So what to do? This cardiologist has now at least 3x backtracked and not followed through on her own plan of action. My husband says we should phone her again on Monday, and tell her that we're not satisfied being left in the lurch. That it's clear there's something very wrong with our son, and that we know from reading up on it, that the blood test is NOT a particularly good indicator of mitochondrial involvement or not. That a positive can be taken as a positive sign that something is up (several causes for it though) and a negative is indicative of nothing. It does not exclude mitochondrial at all.
But I feel like we're done with this doctor. I'm done with someone that backtracks every time, and never follows through. I can't do this anymore. So I want to go to his peadiatrician, and beg her to please run with this. And not leave us hanging. To please please please help. Because our son is suffering and we're worried and stressed and feeling sooooo alone.
When I look at my son, I can just cry. The difference between what he was on the vitathion, and what we have now is so clear. So obvious. If there was ever even a thread of doubt left that there's really something wrong with him, it's gone. I know there's something wrong. And I want them to find it and fix it. He's suffering, and how is it okay to leave a 6-year old suffering??? How can this whole damn situation even happen??? How how how? You see your child is ill. You take him to the doctor. He gets diagnosed. He gets treated. That's how it works, not true??? How can they just leave him be like this? How can this cardiologist think it's ok to just treat the symptoms with a cocktail of vitamins, without continueing to look for the cause?
The past month, he has been constantly tired, he had fever 4 times, he threw up one day, he has tummy aches constantly (daily) that drives him to tears, he had chestpain so badly for about 3 days that he couldn't get up on the barstool one morning or done much more than just sit or lie down. His legs and feet sometimes pain so badly, that he's crippled for a few minutes. He's anxious, unhappy, and sad. He's in pain, he can't do what he wants to because he's too tired. When he (or me) pushes himself to do something, he turns pale. His eyelids constantly hangs at halfmass. He has circles under his eyes. Even other people has now noticed that it's going badly. And this all after being on holiday for almost 3 weeks!!
Argh!!! But no, let's just throw vitathion at him, "because it helps him so much"!!
Should we do it? Give him the vitathion to at least give him some relief? Because seeing him suffer like this, it's eating away at us. It kills us. But what if next year, the next doctor says "oh, he needs a muscle biopsy", and then he has to be off it for 3 months again to do it?! What then... do we put him through this torture AGAIN, all the while when he's starting grade 1? How can that be fair to a little boy?? He's already suffered 1 of the necessary 3 months without the meds. Shouldn't we stuck it out, just in case they still want to do the muscle biopsy?
Man, I can just cry and cry and cry. We started this road so long ago, our goal was to fix it before grade R. Then, we made it our goal to fix it before grade 1. That's next month!! I can't do this anymore. I really can't. I don't cry easily, but today, I just cried. I wanted to be happy because the blood test was negative. But instead, I just cried.
On a more positive note. The kids passed!!! Their hard work paid off. They did really well, and we're super proud of them. Monkeyman too. He did exceptionally well, he's such a bright little boy. So we're all moving over to the new school, and they're starting grade 8, 6 and 1 there mid-January. Now... we're going to relax, enjoy the holidays and try to get rid of all this stress we were all living under. Upwards and onwards!!
Wednesday, December 3, 2014
So tired, but good news!!
We spent the whole day at hospital. Not my kind of fun day! :-( We waited an hour for the dr, only to be told we need to get an MRI of a full back spine for Boeboe. Once there, they sent us away until 3pm. That gave us 1.5 hours of waiting. I first had to drop my husband off at work, which left me with very little time to go home and back again. So we stayed at his work, eating a toasted sandwich and whiling away half an hour, while he worked.
The MRI took just under an hour, and I was unable to go in with Boeboe, as I had to stay outside with Peanut. But she was a trooper! She found it boring, and was quite dizzy when she got out, but she did fine!! Afterwards, we waited for almost an hour for the report, just to be told we need to go back for another MRI. :-( They wanted to get the upper back in another view. Urgh. That was awful. But, again, she was an absolute star!
After the 2nd MRI, which took another 20 min, we had to wait AGAIN for the report. By this time, it was 17:30 and we had been there for almost 6 hours. With a busy 2-year old in tow! Gosh, what a difficult, tiring, awful day. Once we had the results, we were supposed to go back to the doctor, but he was already gone by then. :-( So we don't really know for sure, but what we read from the report, she's just fine!!!! Yay!!!!! I'm so so so relieved. I just simply can't imagine going through the whole detethering again. On the other hand, I'm a bit stumped, because that means she's loosing function for no reason?! I just hope she gains it back like the urologist seems to think. :-(
In any case, for now, I'm just deadtired and want to revel in the fact that there's no sign of retethering. Yay! Yay! Yay!
:-)
The MRI took just under an hour, and I was unable to go in with Boeboe, as I had to stay outside with Peanut. But she was a trooper! She found it boring, and was quite dizzy when she got out, but she did fine!! Afterwards, we waited for almost an hour for the report, just to be told we need to go back for another MRI. :-( They wanted to get the upper back in another view. Urgh. That was awful. But, again, she was an absolute star!
After the 2nd MRI, which took another 20 min, we had to wait AGAIN for the report. By this time, it was 17:30 and we had been there for almost 6 hours. With a busy 2-year old in tow! Gosh, what a difficult, tiring, awful day. Once we had the results, we were supposed to go back to the doctor, but he was already gone by then. :-( So we don't really know for sure, but what we read from the report, she's just fine!!!! Yay!!!!! I'm so so so relieved. I just simply can't imagine going through the whole detethering again. On the other hand, I'm a bit stumped, because that means she's loosing function for no reason?! I just hope she gains it back like the urologist seems to think. :-(
In any case, for now, I'm just deadtired and want to revel in the fact that there's no sign of retethering. Yay! Yay! Yay!
:-)
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