Just waiting. Again. Still.

Yeah, no news on Monkeyman. Just counting down the sleeps to the 30th. Not that I have much hope that we'll be any wiser after that. Except if the ENT sees something obviously wrong, of course. Like enlarged tonsils/adenoids, obstructed or narrowed throat, deviated septum. Not sure what else??

I'm a bit depressed. Well, not a bit. I'm really depressed. Not the type that you can go to the dr and ask for help. Just the kind you have to soldier through until the sun is shining again, if you know what I mean? No pill can take my melancholy away. Because it's not rooted in a chemical imbalance in the brain. Just rooted in reality. I'm so sad, so scared, so utterly despondent. And I miss my mom. So much. The tears just want to flow when I think about her.

I've used the opportunity to re-evaluate my life, my goals. It lead me to look at my friendships. And I've been quite surprised at some things I've noticed. Isn't it strange how people react differently to a situation like this?

It's not like it's a death sentence. But it's also not like it's just the flu, you know? You get those that prefers to just dissapear off the scene. Hide and hope you don't notice their absence in your life. That caused me a few smiles. ;-)

Then there are those that immediately want to know what they can do for you. They're the do-ers. The helpers. People that can't just sit still, but don't know how to make you feel better. So they offer their help. They're the salt of the earth. The people that would make sandwiches for a funeral, take a pot of soup to an ill friend, or bake lasagne for the children of someone going through chemo.

And then, there's those inbetween. The friends that just don't know what to do. They want to make you feel better, to support you, but they don't know how. Some of them are just too busy. By the time they remember you again, a week has flown by and they didn't realise it. I don't blame them, it's not as if life came to a standstill because we're going through a trauma. They still have their own daily troubles to deal with.

Some of them try, but have no idea what to say other than "how are you", or "how's Monkeyman". Or "I'm sorry". I don't mind really. Being asked how I am, or how my son is doing, is really good enough. It tells me all I need - that you're thinking about us. That you realise we're not okay. That you care about my son and what he's going through. That I can trust you enough to share if I feel I need it.

Then there's those that understand. Silently, they just understand. They give you a hug at the precise moment you need it, and you know they get it. They know how worried your mommy-heart is, how little sleep you're getting, and they know there's nothing much they can do to change the path you're on. They can just help carry the load by being there. They worry with you, because they know, this is serious. This isn't nothing. This isn't you dealing with a child with a cold. Or even pneumonia. This could have far reaching consequences for your child, and they get that. They know that sometimes, all you need, is someone that understands. That gets it. That gets you. They're the really close friends. The friends you know will always be there for you.

The type of reaction that I do mind, are those that ignores the issue, or minimise it. Please, don't ignore it. Don't go on as if you're not aware of anything. It creates the impression that you could care less. Or don't make me feel as if I shouldn't worry about my son. Don't tell me it'll be fine, when you yourself, do not know that. Don't tell me I'm stressing over nothing. Don't tell me my feelings are wrong/stupid/unnecessary/over the top when you haven't put yourself in my shoes.

So what is it like to be in my shoes? Well, Monkeyman has come up to me tonight, after sitting down on the couch for a long while, thus not playing, tummy filled with dinner, and told me "Mommy, my head is filled with noise" (In Afr: Mamma, my kop raas). It made me smile, of course, but alarmbells were immediately going off. Because, as he explained thereafter, his head is spinning. Dizzyness. It's a symptom of Pulmonary Hypertension. That's how it is like, in my shoes. Your heart skips a beat everytime he says his heart is beating too hard (and even more so when you can see it with the naked eye). Or when he says he doesn't feel well. Or when he says no thank you when you ask him if he wants to come and play something with you. Because he's too tired and wants to rather just lay down. Looking at his little face, your heart contracts in fear that this thing could potentially be a killer. What if the cardiologist is wrong, and his disease is futher along than she believes? She did admit that his symptoms is worrying her. And I didn't even tell her all the symptoms, because at that stage, I didn't realise they were symptoms.

So ya, tell a mommy who's son was recently diagnosed with an extremely rare heartlung disease, that it aint serious. That she doesn't need to worry. That she's stressing for nothing and should just relax and go on as normal until all the facts are revealed. Yeah. Let's see how you do that...

We had a lovely weekend! So yes, as much as we can, we do carry on with life. We went away with family and it was really nice. Good weather, albeit very very cold already. Winter came early this year. The kids still swam (in the heated pool) and I'm very proud of monkeyman! For the first time ever, he decided to swim away from the stairs, on his own!! He didn't have his wings on, but must've felt safer with the little tube around his waist. I were so surprised! He always had this extreme fear/love thing going on with swimming pools. He would be absolutely petrified of leaving the safety of the stairs, even when daddy holds him. But he loved being in the swimmingpool! Just on the stairs. Playing there, looking at the other kids' antics. Until this weekend. Somehow, he started to outgrow his fear, and decided he's going to swim into the deep water with just a little tube around him. I'm so chuffed with my little monkey!!

Some pictures of the past month:

Sisters playing together - Peanut absolutely love it when
Boeboe plays with her. Even when that means
you get handled like a little doll!

Did I mention we have a crawler? Somewhere around 9 months,
after rocking on all 4's for about a month.

Our little princess

Looking so much alike in this picture!

Big eyes, just like her siblings

Naughty little bugger, look at my teeth!

Monkeyman loving the pool stairs, as always

Our funny bunny

No, we don't underfeed him. He underfeeds himself.
But that's a post for another day.
Apart from being able to count his ribs,
I love this relaxed photo of him!

Why sit IN the boat, when you can swim UNDER the boat?

At long last!! Monkeyman swims!!!

Pulmonary Hypertension?!?!

Today, I'm angry. I want to scream. I want to shout and hit out at whoever dealt us this hand. This isn't FAIR. This isn't right. This isn't happening!

Why??? I just can't wrap my head around it. Every time Monkeyman complains about his heart beating too hard, or too fast, I just want to cry and run away. I can't face this. I honestly can't. I don't have the strength for this again. It hurts, and I can't take that anymore.

When my firstborn was 5.5 years old, we played outside in the garden. He was chasing me, but I heard his footsteps slowed. So I turned around to see why. He had this really funny look on his face. Not funny haha. He was smiling, a surprised smile. But there was so much confusion on his face. As if he saw/felt something he just couldn't understand. I asked him twice "Mr N, what's wrong" and he would answer me "I'm tired." So I walked over to him while he tried to walk to me. But he was disorientated and swerved to the right. I caught up with him and grabbed his arms, by which stage his legs buckled. He lied in my arms with the strange smile on his face. His eyes looked fine. He didn't loose consciousness. Next moment, he sat up, his face normal, this time with a real smile on it. He told me "come mommy, let's play!". You could've ticked me over with a feather. I'm sure I had almost the same look of confusion on my face!! So I stood up, frowned and told him that I think he should rather go and sit down for a moment. He couldn't understand why, but obliged me. I made him comfortable and kept my eye on him for a while. Then the shock and confusion hit me and I teared up. I excused myself before he (or Boeboe) could notice, and at that moment my friend phoned. She heard in my voice that something was wrong, and after explaining, she urged me to phone the pead, even though he seemed fine at that moment.

By the next morning, I was sure nothing was wrong. That I was just being melodramatic and got a fright for nothing. He must've been tired, maybe a bit dizzy. That's all.

Pead felt different. She scared me. She assured me that what I'm describing, wasn't normal and that there's probably one of 3 causes. Epilepsy, a bloodclotting problem or a vein-problem. My eyes stretched in alarm on hearing Epilepsy, and she told me that I must hope it's that, out of the 3. That caused me for the first time, to realise we're not dealing with low bloodpressure or something innocent here.

What followed, was days and weeks of tests, waiting for results, waiting for dr appointments, etc. The absolute worst was the moment the technician's shoulders slumped during the EEG and I just knew it was epilepsy. And the 2nd worse was the 3 days after the EEG, before we could do the MRI to rule out a brain tumor. To just even imagine for a moment that your 5-year old might have braincancer. It was too much. My husband was unable to work half the time, we didn't sleep, we barely ate. We didn't talk.

His MRI was clear! Then we had to wait to see the (extremely busy) pediatric neurologist to get confirmation on what type of epilepsy. Then settled him on medication, dealing with the inevitable side effects. Noticing how your son changed from who he was to his new normal. The heartache to say goodbye to the boy he was forever, and to accept this new version of him. It was a hard, hard few months. With time, we accepted the diagnosis, the worry got a bit less, the heartache was soothed.

Then, 2 years later, my 5-year old daughter bumped into me on Christmas Eve and her grandpa noticed it was because of a foot deformity. Well, the rest as you know, is history. Two YEARS of going from dr to dr to dr, doing horrifying tests, trying medications and procedures and worry worry worry. The stress on our family was immense.

We already had baby monkeyman. Else, I don't think we would've had another child. But he was such a joy, and soon became the spill around which our family functioned. Everyone wanted to please him. He was spoilt absolutely rotten.

Then, at long last, Boeboe was diagnosed and operated on age 7. Things turned to a new normality in our house. Feelings calmed down. New routines were created. Mr N was doing extremely well with his medication. There was even talk of him maybe getting off of it at some point. Boeboe was getting better, the operation was a huge roaring success. So, we decided on another, last baby. Monkeyman was fine, we had 2 close calls with our eldest 2, but surely those days were behind us now?

Not.

Monkeyman is 5. Yes, exactly the age the other 2 were when it all started with them. WHY? This canNOT be chance?! What lessons aren't we learning, that we have to be taught over and over and over. What are we missing? Where are we going wrong? Why is this happening for a THIRD time? I can't. I simply cannot go through this again. I don't have the strength anymore. I can't face it. I honestly cannot put another child of mine through so many tests, so many procedures, so many painful experiences, so many side effects from medication that is sometimes worse than the initial symptoms they're trying to alleviate. I can't. I really, honestly can't.

I'm hanging onto hope. Maybe, just maybe, the dr was wrong. Maybe the diagnosis was just a prelimanory. Maybe it needs confirmation, where it would just be ruled out as not true? Surely that must be it. There's just no way that Monkeyman might be really, really ill. He's my baby. He's our everything. This can't be. They can't tell me he's facing a life threatening disease. This just ain't happening. So the dr must be wrong. She has to be wrong.

She said he had Pulmonary Hypertension. I've never heard of it before, and had to ask her to repeat the term. She did. And she didn't sound concerned much. Is it because she works with the worst of the worst every day? Because she sees newborn babies die due to heart disease? Because she has to operate on tiny little bodies every day? In the bigger scheme of things, pulmonary hypertension is a much better diagnosis than some of the others she has to make every week or month? Or maybe she's just a very relaxed type of dr.

Or, maybe, the diagnosis isn't so bad? Maybe we're lucky, and whatever the underlying cause, it will be easily rectified and it may even reverse the damage to his arteries and heart? I tried to find stories on the internet of children this happened to. I couldn't find anyone. Yet. In theory, it seems possible. In practice, it doesn't seem likely. Except in Pulmonary Hypertension of the Newborn. But that seems to be like a totally separate disease on its own. There's a number of types of this out there. But the 2 most important distinctions to be made, seems to be if there's an underlying cause they can find, or not. If they can, prognosis is a bit better. If they can't, prognosis, especially in a child so young, seems to be pretty awful. So I'm not even going there.

At this stage, you're probably asking but what is Pulmonary Hypertension. Well, for 1 thing, it's NOT hypertension. Hypertention is when the left heart that pumps oxygenated blood around the body, experience resistance (due to a number of possible causes) in arteries throughout the body. This resistance is measured by the blood pressure cuff. Pulmonary Hypertension, is when the right heart experience resistance when trying to pump de-oxygenated blood from the heart to the lungs. High bloodpressure in just those arteries leading to the lungs. There's a major big artery leading from the heart that splits into two big arteries going to the lungs. When resistance is experienced, the heart has to work faster and harder to overcome this. Since the heart is a muscle, working harder leads to enlargement. So yes, Monkeyman's right ventricle (lower right heart chamber) is enlarged, as well as the pulmonary arteries. Unfortunately, this can cause heart failure eventually, or other damage to the heart, arteries and/or lungs. The disease is progressive, incurable and life-threatening. Walking out of the cardiologist's office, we didn't know that. She didn't mention any of this. We had to google over the weekend, to realise what this disease precisely means.

So what could the underlying causes be? Well, for now we're going to the ENT. The cardiologist seems to want to exclude structural abnormalities as a cause. My guess is, that she wants him to check if his throat is as narrow as his dad's. In his dad's case, this causes sleep apnea. Apparently, sleep apnea can lead to a lack of oxygen at night, causing the heart to work harder and damage to the arteries of the lungs - leading to pulmonary hypertension. Adenoids and tonsils could also cause sleep apnea. After a visit to the ENT, a sleep study will be booked to check for sleep apnea.

The other possibility, is connective tissue disorders. I looked into those they list (scleroderma, Lupus, Crest, Ehlers Danlos), and I just can't fit Monkeyman in one of those boxes. I just don't see it. Maybe I'm wrong, maybe time will tell. But for now, I honestly don't think that's a cause for him.

He doesn't, as far as we know, of course, have HIV. He also doesn't have bloodclots (will probably be ruled out at some point?). He doesn't have a chronic liver disease apart from Gilberts (which is too benign to be a cause). He doesn't have sickle cell anaemia. He doesn't have any heart defects. He doesn't use illegal drugs. He hasn't used some dangerous appetite surpressants. He doesn't live 2 500m or higher above sea-level (high altitudes). All of these are possible causes. None which seems likely for Monkeyman, except maybe bloodclots or sickle cell. Both which I'm sure will be ruled out.

Asthma and other lung diseases can also cause this, but the pead and cardiologist both seems to think that this is also very unlikely in Monkeyman, because of how good and normal his lungs sound/react/look.

So ya, that leaves us with sleep apnea. After that, Idiopathic Pulmonary Hypertension. No known cause except maybe in the genes. I don't even want to go there. The fear is too great. My mom died from heart failure without they ever being able to pinpoint the cause. It's a sore, sore, sore point. I can't go there. Not yet.

So I see 1 of 4 possible roads for Monkeyman (and us).

• 1 : Dr is wrong, Monkeyman is/will be fine.

• 2 : Monkeyman getting diagnosed with something like a structural abnormality which could cause the pulmonary hypertension. It gets fixed via an operation or sleeping with a CPAP machine rest of his life (not ready to face that either yet). It reverses the pulmonary hypertension. No permanent damage done yet to any artery or the heart and he turns out to be just fine.

• 3 : Monkeyman getting diagnosed with sleep apnea, but the hypertension doesn't reverse and damage was done. Leaving him on medication(s) rest of his life.

• 4 : No cause find for the hypertension. Things goes quickly from bad to worse (since the disease is progressive in all cases). He's on medication(s) rest of his life, and would be lucky if it doesn't include a lung transplant, or worse, a lung/heart transplant.

So I'm praying so so so hard for nr 1. And if not, then at the least for nr 2. At this point, I just can't face nr 3 or 4 yet. We'll deal with that if we ever get there.

So why my whole melodramatic post? Well, think about nr 2. Wouldn't that alone, be awful for any mom&dad to face? An enlarged heart, possible damage to some of the big arteries from the heart, tests and procedures that lies ahead. The possibility of awful medications with awful side effects in yet another child. And sleeping with a CPAP machine. Sounds easy hey? So google it a bit. Look at the images. And tell me how you're going to convince a stubborn 5-year old that it's for his own good to sleep with that. Yes, maybe the fact that daddy does, will make it easier in our case? Who knows. But it must break daddy's heart to think that his child will have to go through what he does, every night.

So yeah, anything other than my nr 1, freaks me out. But, what's the chance of a pediatric cardiologist to be wrong?!??

Van bakboord na stuurboord

The title translates to From port to starboard. It's a saying in my hometongue when you get send from one person to the next to the next to the next, without resolving the issue at hand. Well, that's precisely how I feel at this moment. From GP to Pead to Cardiologist to ENT....

So yes, that's our next step. The Ear, Nose and throat specialist. :-( Four specialists in little more than a week. FUN (not). So, the pediatric cardiologist couldn't find anything wrong either. Good news is, his heart is structurally perfect!! No deformities, valves working perfectly, etc. Yay!!!

The bad news is, something probably is up, because his heart is slightly enlarged on the right side, and it beats too hard. But it's not caused by the heart itself, it's something else causing it. The area where it is enlarged, points to a chest/throat/sinus problem. She ruled out the lungs, no asthma or anything. So that leaves throat/sinus. Hence, the ENT next. He has to see if he can find the underlying cause, maybe like an anatomical deformity in the nose area. If not, then a sleep study overnight will be the next step.

Ag, this is just getting so frustrating. When can we have an issue with the kids that's just straightforward and easy to diagnose?! Does all parents go through this type of thing? Why do I feel so alone in this then? Even Mr N remarked on the way home that it's strange that we have 3 older kids, and one after the other we're finding something "wrong" with each one. And everytime they were age 5...

It was a long, long day. I stood up early to take Monkeyman to school, and he was having none of that. Just wanted to sit. I coached him and eventually we left the house an hour later. Got back, put baby to sleep. Gave her lunch after her nap, cleaned the house, fetched Monkeyman and gave him a bath and washed his hair. Then gave him lunch. Pack the nappybag and put the kids in the car. Fetched Mr N and Boeboe from tennis (they had it directly after school). Drove directly to the hospital where the appointment was quite long with the sonar and EKG. Fortunately, they put a nice movie on for Mr N and Boeboe, so we only had to deal with a (very tired) baby and Monkeyman. By the time we got home, it was after 6pm and dark and cold. And the minute Monkeyman stepped inside, he said he's nauseous. I took him to the bathroom where he promptly threw up (in the loo fortunately). He lied down on his couch, and perked up later and haven't vomitted again. Not sure what's going on?!

So ya, eventful and LONG day. Thank goodness it's weekend. I'm in desperate need of sleep (Peanut's cutting her top teeth), relaxation and distraction. I'm taking the kids shopping for winter clothes tomorrow and on Sunday we're celebrating Mothersday. I'm hoping for a day where I don't need to do much. But with a baby in the house, I doubt if that'll pan out this year, LOL.

And here we go again

This one isn't about Boeboe. Yes, I know, I should update on her again. But today, my mind is filled with my little boy. Sometimes, I marvel at the fact that I could love him SO very much, when I already loved 2 other children around the moon and back. How come a parent's heart can expand to fit in all of this love?

He's 5 now, and becoming a real little boy! (I once asked my friend, "as opposed to what, a wooden doll?" when she said this of her boy, hahahaha.) Maybe it's an age thing. But he's so much more into boy games now. One day a few weeks ago, Boeboe came running in from outside crying. Apparently, she and Monkeyman was playing, when Mr N decided to go kick a ball outside. And Monkeyman dropped his sister like a hot potato to rather kick the ball with Mr N. She felt cheated and done in. So I tried to explain to her that Monkeyman is a boy, and boys like to play boys games. She was very affronted, and told me "But mommy, we were playing a game that were for boys AND girls! We were pretending to be baby birds!!!!" She honestly couldn't grasped that that isn't the type of game boys are usually into...hahahahaha. Ah well, at least I've succeeded in not putting my kids into little gender boxes (too much)!

So ya, Monkeyman now likes boy-things. Kicking ball, playing tennis, sword-games and screaming pow pow while pointing a non-existing gun in the hand at an invisible alien. So much imagination, little boys!!

So what does my heading have to do with any of this? Well, we're on the diagnostic road again. :-( Can you believe that? Honestly, I think the doctors are going to start labelling us as munchausen-by-proxy parents! Someone who would hurt their own child to get the attention of medical professionals. Ha! Who on earth would LIKE this road? I just can't understand that. Anyhoo, that's beside the point now. We're looking for another diagnoses. This time, in Monkeyman. It's just fair you see. Mr N has the epilepsy, and had all the attention from his parents for months during that time he was diagnosed and put on medication. Then Boeboe came along and had our focus and attention for years with the tethered cord. So now it's monkeyman's turn!

:(

Seriously though, I try to see the humour, but I'm tired. I don't want to do this. I don't want to worry about another child, another diagnoses, another long road. Honestly, I don't think I'm up to it again. Sniff sniff. They say God doesn't give you anything you can't handle. How come God thinks I'm so friggen strong when I'm NOT?

Well, as you know, if you've frequented this blog (or know us) I've always complained about Monkeyman's odd tiredness. Even as a baby, he'd crawl around for a while, laughing, playing, and then suddenly, just press his face down on the carpet or his blanket or my feet, and just lay his little body down. Not sleeping, not closing his eyes, just as if his whole body was tired (not sleepy). Or the way he would, out of the blue, stopped playing as a toddler, and just go lie down on the couch. He decided on one couch, and I swear, half of his awake time in his life has been spent on that couch. :-( Of course I sometimes wondered if it was because of the tv, or laziness, or being spoilt. Countless times though, I would switch the tv off the moment he starts playing in the morning (or never put in on) and check him. Without fail, he would play about 30-60 min (age 1-3), then go lie down with his blanket. Even when he had nothing to watch, nothing to do, he would just lie down and clutch his blankie. He would play with his fingers, humm to himself, scratch his head, play with his blankie, etc. Or sometimes He'd fetch a little car and just lie on the couch pushing his little car. It sometimes really broke my heart, seeing him like that. All quiet and tired. In time (and I'm literally talking about months/years) I caved and indulged him more with tv at those times. Letting him play, then when he's bushed, let him watch a movie with the request that when the movie is done, he needs to play again. It usually worked well.

What also convinced me in those days that he wasn't faking, was that even when he missed his Boeboe all day while she's at school, he'd still only play about 30-60min with her when she gets home. Then, doesn't matter how much fun he seemed to be having, he would go lie down. Frustrating Boeboe because she wasn't done with the game. Even when other friends visited, Monkeyman would only play a while, then goes to have a lie-down. I remember him "playing" from the couch while other kids tried to entice him off it. He would lie there, laughing with them, using his arms and legs, but keeping his body horisontal. Just for a while, almost like he had batteries that needed recharging. Then he'd jump up and played again. For another hour. Sometimes like with a birthday party when it's chaos and so many visitors, he would push himself. The moment the last child is gone, he would crash. Literally. The rest of the day he would spent on that couch. Unable and unwilling to do anything more than lying down. Sometimes he would fall asleep and wake up a bit better, but since age 3 he dropped his afternoon nap and it rarely happenend thereafter again.

Writing it out like this, it makes me feel guilty, for not pushing this more. It really does sound weird for a 2 or 3-year old little boy, doesn't it? I remember speaking to other parents, who complained that their boys are just non-stop. They run and plays all day long, non-stop. They thought Monkeyman very very weird. I couldn't blame them! Mr N wasn't hyperactive or even close to it, but even he was totally the opposite to Monkeyman at that age. So yes, why didn't I do more? I don't know. Since I noticed this (around age 1 I'd guess??), I asked about it at every pead check, every GP visit, every dr I've seen with him. He wasn't ill much, so this wasn't many times. But still, I never failed to ask about this every time I saw a dr with him. Age 2.5 years, I told my husband I'm worried, so I took him with when I had to take Boeboe to the pead. She listened to his heart and gave him a thorough checkup. And sent him off for some bloodtests (glucose, thyroid, iron, whiteblood count, etc.). It all came back normal, except for low seratonin that could point to low iron, though his iron count was normal. So he got 3 months of iron supplementation. It didn't help much. Not at all for the day, and only a tiny, tiny bit maybe for his night wakings (which only stopped long after age 3).

Over the years, it has become much less noticeble, and after the pead told us they could find nothing wrong when he was almost 3, I just accepted him as being unique. It did, afterall, fit in with his whole personality. The reserved, quiet, calm, contend, sweet little thing that he is. Both his dad and his grandpa was the same. Always tired as children. So I thought ah well, must be a family thing. Strange to me, but normal to them, iykwim?

A few weeks ago though, he was sitting on the couch playing something (think it was iPad), when he stood up to look for me in the kitchen. He told me that his heart is beating really fast. I was busy and barely registered what he's saying. Just nodding my head and said Oh? So off he went, happy that mom wasn't worried. A few days later though, the same thing happened. This time, I measured his pulse. It was 98, which didn't register to me as being really high (though I had no experience or knowledge on how high it should be). But what I found strange, was that again, he wasn't doing any excerzises. And his heart was beating so rapidly, that I could feel and see it being in overdrive. His shirt was moving slightly from the beating. I was mildly concerned, but then forgot about it again. Until beginning last week, while we were all watching tv as a family one evening. He felt it again, and this time it measured 102. I told my husband about the previous 2 episodes, and he looked a bit concerned. So I told him that maybe I should just take him for a checkup at the GP (general practitioner - medical doctor).

The dr told me that he'll probably going to have to refer us to a pediatric cardiologist. For the first time, I realised that this might not be nothing. I guess I was in denial, because I really, really can't face this road again. The road of not knowing what's up with your child. The road where you know something's wrong, but you don't know what it is. How dangerous or life threatening it is. Or how long it will be until you know. What procedures your child will need to go through before you know. And what and when the end of the road will be. We've been through it twice, with both the older kids. We couldn't face it again.

So ya, I got a little scared when the dr mentioned "cardiologist". I know I know, it's way too early to stress. It's most definitely putting the cart before the horses. Just silly. But when you've been through this before, you can't help but worry. With Mr N, I thought - ag, what's the chance that it is anything really? I'm probably making a whole mountain of a tiny heap of sand. I wasn't even sure if I should take him to a dr!! And then, it turned out to be something big. With Boeboe, I thought, what makes us so special that we'd have TWO children with abnormalities. Chances are so much better that she's just fine. Nothing wrong with her. Well, look how that turned out! She was so special, she's probably the only child in our whole country (of 50+ million people) who got an occult tethered cord that couldn't even be visualised during the untethering operation.

So ya, what makes us so special that our 3rd child would also have abnormalities?!?! This is just too much.

Anyhoo, the dr measured Monkeyman's heartrate with this nifty little gadget. He clips it on the finger, and it has a little screen on which the pulserate shows digitally. It was a bit erratic though, and quite fast. It were something like 106, 98, 89, 102, 90, 99, 80, 95, 105. Etc. And it only went to 80 once. Most of the time it was in the 90's and a few over the 100's. The dr listened a long while to his chest and lungs, and could hear his heart going faster through the stetoscope. He didn't like hearing that, I could see it on his face. BUT, as awfully concerning as all of this sounds now, I didn't get the idea that the dr is really stressed out about anything. Just mildly worried, concerned. He said that something's up, and we need to go back to the pead. I guess because Monkeyman's heart was still beating rythmically, not arythmically, he changed his mind about the cardiologist. He wanted the pead to do some bloodtests to see if it could be a systemic disease that caused his heart to go faster even when the child wasn't running around. Together with his history of always being physically tired, and having legpains, the dr thought something must be up.

So off we went, back to the pead. She wasn't concerned when I started speaking, and mentioned some of it as normal (sinus arrythmia). But then she read the sealed note the GP send her (I was sooooo curious and desperately wanted to open it, but felt too guilty) and you could see her mind started ticking over. She frowned and slowly tucked the note into Monkeyman's folder, very deeply in thought. Then declared that we'd probably need to send him to a cardiologist. You can imagine how much I wish I read that letter when I had the chance!!

Anyway, so she did the physical, and said that she really can't hear any murmur or rushing sound on his heart. It all sounds normal. She asked us about family history, and then said that having heart palpitations like Monkeyman had, where you can feel your heartbeat going faster/harder that it stops you in your tracks, isn't normal and needs checking out. She mentioned that his mitral valve might not be closing properly. So yeah, this is why I said "And here we go again". Because we've now been referred onto the next specialist (pediatric cardiologist). Fortunately, we got an appointment quickly, we're going tomorrow. It sounds like it would involve a number of tests (EKG and sonar).

I'm grateful the pead doesn't believe it's his thyroid or diabetes or anything like that. But I'm scared that she thinks it might be his heart. I know, lots of children/adults have mild heart problems. But when it's your own child, and you don't know what it is yet, you can't help but worry. Especially since his grandpa was similar as a child. And then, when he was around age 30, he needed massive open heart surgery where a valve was replaced with a mechanical valve. As long as I've known PIL, my FIL had always taken medication for his heart, and it needs to be very, very carefully monitored. His bloodlevels can't be too thick or too thin, so bloodtests every couple of months year after year after year after year... He can't take any medication, not even over the counter, without asking his doctors first, because it might have an influence on his bloodlevels. He always needs to be careful, always think about his heart, and his wife is always so worried about him. The first time I met him, he told me if I could hear that tick. It was a loud, metallic clicking sound. Yes, that's the valve! I was amazed, it was louder than a watch or alarmclock.

They believe (never comfirmed) that he might've had rheumatic fever as a child, that caused the problems to the valve. But what if it isn't? What if it's genetic? Or, what if the same happened to Monkeyman when he got scarlet fever age 10 months? He was so so so ill, I thought that night that we're going to loose him. Yes, he got peniccillen, so chances of getting rheumatic fever was slim, and wouldn't I have noticed it? I watched him like a hawk, didn't I?

So ya, put that history plus Monkeyman's tiredness plus a couple of drs mildly worried together with being referred to a heart specialist, and you have one worried mommy. :-(