Seesaw

I felt like this with Boeboe many, many times. One week, everything would seem just perfect. No accidents, just a very few stumbles from the feet, nothing serious. And you'd think to yourself....I'm sure she's okay. I'm sure there's nothing wrong. Look at this normal child, how can I ever have thought something's up? It must've been my imagination when she slipped and fall. It wasn't a foot that dropped causing it, it must've been just a normal stumbling-over-your-feet because she was in a hurry or not looking where she's going.

And why am I such an awful mother that refused to believe that she'll stop the accidents anytime soon? Just look at her. A whole week of no accidents. Of course she's fine. What type of mother am I to believe otherwise? Did I actually subconsciously want there to be something wrong? What an awful, awful person must I be.

And then, the good week would pass and she'll have accident after accident after accident. And you'll feel like pulling your hair out from frustration, and cry yourself to sleep because obviously there's something wrong! No 6-year old will wet and dirty her pants continuously like that! No 6-year old will fall 3x in the space of an hour while climbing the stairs, shins turning black and blue and bleeding. There must be something wrong! This can't be the life she's supposed to live! The drs must be wrong! I'm not imagining this, it's happening. It's real!!

That's how it went. Week after week after month after year. One day I'd be convinced that I'm right, and the drs are wrong. That I'm not imagining things, that I'm not wishing something to be wrong. That there are something wrong. We just needed to find it! Just to have a seemingly normal child the next week and I'd be full of self-doubt.

That's why it took 7 years to get Boeboe diagnosed. :-(

And that's why it took 5 years to get Monkeyman diagnosed. :-( And it's not the end of the road yet. Because I'm still on the seesaw with him. One day good, one day bad. One day average, one day normal. One day tired, one day running around. How am I suppose to know what's going on when this happens?

I'm glad and relieved that he has good days. Don't get me wrong. I just wish that 90% or more could've been good days! Then at least I would've said - "that's normal"! But this one day good, one day bad... it's difficult to know what's normal!

I guess you can see how the past 2 weeks went. The first week was back to school week after the mid-year holidays. He stayed at home on the Monday. Tuesday he went to school and I was ecstatic when I fetched him. He was playing around!! He was happy and had a normal, wonderful day. The teacher said that he was just fine, and that he must've turned a corner at long last. I was so relieved.

On Wednesday he went to school again, and he was just "off". The teacher wasn't really concerned, but I noticed it. On Thursday, he was so tired. He stayed at home (he only goes to school 3x a week) and just rested. We went to the one grocery shop for an hour. The first 45min went well, then he just went all quiet, dragging his feet, walking slow, just not himself. Friday morning he refused to go to school. Cried and said he's too tired, he doesn't want to go. After some deliberation, I decided to let him be. Saturday we had Peanut's party, and he was okay. Not bouncing around, but not laying down either. Though, he was very quiet. Same for Sunday. Just average.

Monday last week, he just rested still. He was a bit down because his grandparents went home, so it was difficult to seperate him being sad from him being tired. On Tuesday he went to school again. It went awful. Just awful. Must've been the worst day yet. He didn't play with the kids at all. He sat around, went all quiet and despondent and stayed close to the teacher. For the last 30min she said he continually asked her "when is mommy coming to fetch me"? It broke my heart into pieces. :-( She said he just ain't well. That it just wasn't normal.

So on Wednesday morning he refused to go to school. I took the advice given to me on the FB group from other mommies who has PH kids. I took his lead and left him be. I'm so grateful I'm in the position where I didn't have to take him but could let him be. So he stayed home and just lied down all day long. On Thursday I asked if he doesn't want to go to school since he missed Wednesday, but he refused. Though, he definitely seemed better to me. Not so despondent and tired-sounding.

So by Friday he said he wanted to go to school! When I fetched him, I parked the car in the parking area, which has a great view over the playground. And I just sat there for a few minutes, drinking in the sight of Monkeyman running (yes, running!) around with his friends. He was throwing things, laughing, running, playing. It made me sad in a way, to realise how much that meant to me. To see him like that. It should've been the norm, not the exception, to see him playing care-free with his friends.

The teacher said he had a wonderful day. He was like any other "normal" 5-year old little boy! And I could see it. His cheeks were rosy red from running around. His eyes were sparkling and happy. He smiled and laughed and chatted animatedly.

Friday afternoon he was a tiny bit more subdued and lied down a while. But by late afternoon he perked right up again. His cousin visited, and they had an absolute ball. I can't remember when last I heard him running around in the house, laughing and playing, throwing balls and just went on and on and on, for hours on end. He was just perfect!

Unfortunately, yesterday (Saturday), he went all quiet again. Refused to go outside and play with his sister until about 16:00. She begged and pleaded and tried to bribe him all day long. He just refused and sat down. Today, the same story. His siblings asked him to come and play with them outside, and he'll go for about 5 min at a time before returning to sit down inside again. He still plays with them, just not as energetic or as continuously as he did on Friday.

So ya, that's the past 2 weeks on the seesaw. Up and down. Down and up. How on earth should I know what's normal anymore, what's his normal, and if anything is wrong? I don't!! I don't know anymore. So ya, overall I feel like there shouldn't be so many off-days. There shouldn't be so many times he needs to rest. And his teacher shouldn't notice something is wrong. Because then, something is wrong. But, the good days seems so normal!

We have a week to go. I emailed his cardiologist last week to ask advice, but either she hasn't seen/received the email, or she ignored it. Either way, I haven't received a reply. Pity. Tomorrow in a week's time, we have our 8-week checkup. To see if the pressure in the pulmonary arteries still measures high. The ENT assured us that it WILL be down. I asked him "are you sure"? My voice full of doubts. So he said in a voice filled with finality "it will be".

In the meantime, I'm going to book a 2nd opinion appointment. I think I lost most of my trust in his current cardiologist. She diagnosed my son with a potentially life threatening, or at the very least, life altering disease. In her eyes, it wasn't a big deal because she thought/believed he'll recover completely. But, from what I read, it's so rare, and drs are frequently wrong about this disease, that she SHOULD've at the very least, entertained the thought that she might just be wrong. In which case he needed follow-ups, good care, a caring, knowledgable dr, and support for the parents.

We had none of that. A dr that didn't seem caring, no support, no care, no follow ups except the one appointment that the ENT told us to make at 8 weeks to see the cardiologist again. Not even after I repeatedly told her that he's exceptionally tired and has been all his life, she didn't follow it up. Even after I emailed her the 2nd time, telling her that it's been 2 weeks after the adenoidectomy and he's just very, very tired all the time, she told me to just "give it a few more days". No support. No follow up. No advice. Not even another email a week later to at least ask how he's doing. Or a telephone call. Nothing.

I feel like I failed my son. I should've demanded better care. I should've lifted my ass and made a 2nd opinion appointment a month ago already. I should've done a whole lot of things differently. Now, it's been almost 3 months after his first diagnosis and all we've had to show for it, is minus one set of adenoids and a child that's worse off. :-(  And parents stressed to the limit. What a waste of 3 precious months.

Or not? Maybe I'm just unnecessary pessimistic and everything would be just fine next week. Please, let me be wrong. I really, really hope that I'm wrong.

Birthdays, Bunnies and Pictures

The past few months, half of our family turned a year older! First, it was me.

They baked and decorated the cake all by themselves, mostly Boeboe.

 Second birthday was daddy. Again, they baked and decorated a cake, and we threw him a small surprise party! It has now turned winter, which meant gorgeous days where I stay. It hasn't rained in literally months, most days there's no wind, and though it's freezing cold at night, during the day it's quite pleasant on most days. So, we've been spending alot of time outside.

My gorgeous babygirl at 10 months, learning how to climb steps.

A whizz when he's playing baseball or cricket.

Look at her big, beautiful eyes. Not the blue-eyed baby I've hoped for.
But one look at those eyes and who cares what color it is?

 About a month ago, we got the three fluffy baby bunnies. Aren't they the most gorgeous fluff-balls ever? The kids adore them.

Boeboe loves holding and cuddling them.

And Peanut just wants to catch them!

Almost....almost....just a little more...



Meet Nova, Mr N's new bunny with the pink ears.

  

And Isabella, Monkeyman's grey-eared baby.

And the only black one, Boeboe's Abigail.

Loving their bunnies!

First taste of chocolate mousse!

 Last weekend, we celebrated Peanut's first birthday!!! Can you believe it? A whole year has passed.

Opening prezzies!!

Grabbing a cupcake and a donut from the adult's tidbit's table.

First bithday cake

Everyone loving the little sweeties on the cake.

3 Weeks to go...

Yes, I'm counting down the sleeps. It feels like half my life is and has been spent waiting on doctor appointments, surgery, symptoms to get better, symptoms to worsen, new symptoms to appear, etc. Waiting. How many months and years we had to wait for Boeboe to get better. Or get worse enough for them to believe me that something was wrong. How many times we had to wait after surgery/treatment/medication to see if THIS time, it'll be a solution to all our problems. We've been dissapointed time and time again with Boeboe. Absolutely nothing the drs tried, worked fully for her. After the umpteenth time of trying something the dr said WILL work, and then seeing her have 1 accident 3 days later, then another 2 days there after, then another and another and after 2 weeks of waiting, praying, believing, you realise they were wrong. Doesn't matter how much they believed in it themselves, they were wrong.

I grew up in a family that implicitly trusted drs to know best. For drs to know everything. Nothing they did, was ever wrong, and nothing they said, was ever doubted. So why am I so scared and reluctant to rest assure that the ENT knows what he's talking about? Because of my experiences since childhood.

• Before Boeboe's diagnosis and operation for Tethered cord syndrome, I was assured by a highly specialised dr with 30 000 case files (in his own words!) and 30 years of experience, that she WILL outgrow her incontinence. Yeah right. She lost almost all function completely, within less than 6 months after that conversation.
• Before Boeboe's diagnosis, another highly qualified doctor that has appeared on local television as he's that good, told me that Boeboe's lying when she says she doesn't have feeling where it's needed. (When in fact, tethered cord is known to destroy the nerves that leads to bladder & bowels, thus causing loss of feeling).
• A number of doctors have prescribed medications, and then seemed baffled that it didn't work as suppose to.
• Time and time again, the people on the internet LIVING with this type of defect, has shown to be much more knowledgable on the ins and outs than the drs. Same for the parents of children suffering from this. They diagnosed my daughter a full year before she was diagnosed by the specialist. I've learned more from them about my daughter's care than any of the drs could help me with.
• In my own case. I lived with endometriosis and its debilitating symptoms for about 13 years before being diagnosed. 11 of those were spent looking for an answer, some help, support, anything from the drs to make it better. To no avail. I saw at least 2 specialists (and a number of general doctors) in that time, and they had no idea I had endo.
• I was 31 when I was diagnosed with GERD. After suffering the symptoms at least 20 years. Not even one doctor I saw in those 20 years, even mentioned GERD as a possibility.

I could go on, but more specific to Monkeyman:

• The ENT was adamant that Monkeyman will show immediate improvement within 1 or 2 nights after the adenoidectomy. It's been 5 weeks, and I'm STILL waiting for that improvement.
• The ENT didn't even realise that PH in a child is a whole different ballgame during adenoidectomy (or any other surgery, however minor). He didn't even know that it's dangerous. That the child has a higher risk of mortality under anaesthesia. That his heart could give in. That he could smother from being unable to process the oxygen in his lungs. His wife, who also acts as his anaesthetist, fortunately seemed to have known about it. In America, they don't even allow normal anaesthetists to give anaesthesia to PH patients. Only specialist PH anaesthetists are allowed, in special PH centres where they're equipped to deal with any eventualities.
• Again, people on the messageboards/forums/groups for PH, tells me different stories than what the ENT/cardiologist said. So who to believe? Most people would say - the drs, of course! But when they were shown to be wrong in Boeboe's case every time, while the parents on the msg boards were right, then who should I believe in Monkeyman's case? It does put me in a predicament, doesn't it?

Just last night, I read one parent's opinion, which was immediately confirmed by everyone else. She said that you have to take your child to a PH specialist immediately upon diagnosis. Do not do the wait-and-see that normal cardiologists or pulmonologists insist on. It could be fatal. This scare me.

Look, it's not that I completely distrust doctors. Or think they're stupid or inexperienced or bad doctors. Quite the opposite. For the number of things I could list up here, there's at least twice as many times that doctors have pleasantly surprised me by diagnosing the problem quickly, efficiently and thoroughly. Like when the cardiologist diagnosed Monkeyman's PH within 2 hours of seeing him. I believe that the far majority of doctors in our country is exceptionally good. I believe they have lots of experience, they're very knowledgable, well-trained and extremely intelligent with a keen eye. I also believe that almost every doctor has, or will, make mistakes. They'll miss something, or diagnosing someone wrongly, or won't have the necessary experience where it's needed. I believe it's quite normal, since they too are human beings. They too get overworked, overtired, overconfident, etc. And with rare diseases in a country as small as ours, it's very easy to have limited experience.

So yeah, I'm worried. Worried that the ENT will be wrong. Worried that we're wasting precious time by "waiting-and-seeing". Worried that things are worse than what they've lead us to believe. Or worse than what they believe! My child won't be the first one who was diagnosed with sleep apnea with resulting pulmonary hypertension, but all the personal stories on the internet that I could find, have turned out to be PH not only from sleep apnea. Curing/treating the sleep apnea didn't cure the PH. It either came back (sometimes a year or more later), or it never completely went away. So how come my little boy would not only have a very very rare disease, but the rarest form of all - the one that's curable. It feels like, again, I have to pray for a huge huge huge miracle here. What makes the drs so confident when to me it feels like they believe the almost impossible? But I can't help to hope, believe and pray. Because, it IS possible. I found 2 studies with a total of about 10 kids whose PH pressures went down after their sleep apnea has been treated. The only thing bothering me about this is that most kids' pressures were around 25-28 and it went down with about 5-10. The 3 kids whose pressures were 30-32, only went down with about 5 or so. No child's was higher than 32. It's not a big stretch to 35 (Monkeyman's estimated pressure), but still, it scares me that most children with PH from sleep apnea, is only 26 or 27 usually. Why would my baby's pressures be so much higher? Also, what if treating sleep apnea can only drop about 5 on the pressures. That would leave Monkeyman with a count of 30. That's still considered as having PH. Lastly, none of the 2 studies followed the children for a couple of years. I heard of a few parents whose children's PH came back after it was presumed to be caused by sleep apnea. In the end, some of them was diagnosed with primary PH. The absolute worst case as far as PH goes. Also, Monkeyman is awfully young for sleep apnea to have caused PH already. It seems to mostly happen when people have had untreated sleep apnea for 40 or 50 years! Or at the very least, in older children or teenagers. Not in 5-year old little ones!!

If Monkeyman was feeling much better, reacting much better, with symptoms getting less and less, then maybe I would've been more relaxed, waiting for his repeat echo. But we're still waiting for him to get better. To see him less tired, less lying down, less complaining about being tired, less complaining about being too tired to walk outside. Or cry because "he's too tired". He also still gets regular heart palpitations. The past week was no better and no worse than the week before. He's definitely mostly back to what he used to be 2 months ago. Before he got that cold that turned into sinisitus, and then having the adenoidectomy that threw him for a loop. But he's still no better than what is normal for him. Nothing yet that could reassure me that his PH pressures would be lower in 3 weeks time, than what it was 9 weeks ago.

But, there's still hope. There's still 3 weeks to go...

One month post adenoidectomy

It's been 4 weeks, and at long last, I think Monkeyman is back to what he was before the little operation. A whole month, can you believe that? To recover from taking out adenoids. Gosh, that would've told me there's something going on, even if I didn't know about the pulmonary hypertension. But yay, he's better!!!

Unfortunately, he's nothing better than before yet. Maybe, now that he's recovered back to what he was, he'll start to show improvements beyond that. Like the ENT believed would happen within 1 or 2 days. Yeah right.

I'm just relieved he's back to normal. His normal. He plays again, he runs around outside for bits at a time, he's yelling and screaming and being excited and HAPPY. We have our happy, friendly, giggling boy back. It was so difficult seeing him so down and depressed and tired.

He did crash after fetching him from the in-laws, like I was afraid will happen. We got him the Friday evening. Apparently, accordingly to my SIL, he was lying down in front of the tv the afternoon. Mr N also said he didn't do that much that day. By Saturday morning, he was soooo tired. We went to a restaurant with a cousin of his, and instead of playing in the play area like he usually loves to do, he preferred to sit at the table, colouring in. We forced him to go play, but he came back twice in less than an hour to lie down on the seat. Not even just sit, but lie down. Rest of the day home was spent between lying and sitting. Next day he was pretty much the same.

But on Monday, exactly 3 weeks after the operation, he had slight improvements. I heard it before I saw it. His voice had this little "tilt" in it again, and only then did I realise how tired his voice has sounded. Rest of the week just went a little better every day. Now, at 4 weeks, he's just about "normal"! I'm so relieved and happy! Now, for the next step. To see improvements beyond what is Monkeyman's normal. To see him act like a normal 5-year old. Being told off to be quiet for a moment, or sit still for just 1 second. To not jump on the couches or stop running in the house.

Something that I find strange, is the sleep apnea symptoms, or lack thereof in Monkeyman, before the adenoids were removed. From various sites, this is what they list as possible symptoms of sleep apnea in children:

• Snoring
• Gasping or choking at night
• Pauses in breathing
• Mouth breathing at night
• Mouth breathing during the day
• Noisy sleeper
• Night sweating
• Sleeping in unusual positions
• Restless sleep - tossing and turning at night
• Sleepiness during the day
• Fatigue
• ADHD or hyperactivity being very busy during the day
• Disruptive behaviour
• Inattentive
• Moody or angry
• Enuresis (bedwetting)
• Slow growth
• Worsening of academic performance
• Anxiety or depression
• Flexion of neck at night (sleeping with head arched backwards)
• Cranky behaviour late afternoon
• Poor apetite
• Headaches in the morning
• Going to the bathroom frequently at night
• Frequent ear, nose- and/or throat infections

OK, that's a looooong list. Some of the symptoms overlap. But yeah, looking at a nr of websites on sleepapnea, that's the list I gathered. I've highlighted symptoms that Monkeyman has experienced (on average, not when he's ill or when something else is up) in blue.

So yeah, shoot me for not noticing that my child has such severe sleep apnea, that it caused pulmonary hypertension. :-p Or for arguing with the cardiologist that I really don't think it's sleep apnea. Even if he just had snoring, it would've made just that little bit more sense to me. But the ONE symptom, snoring, that almost all cases of sleep apnea presents with, he didn't have. How could his sleep apnea have been SO severe, that it caused pulmonary hypertension within a few short years, without even the one main symptom? It just doesn't makes sense. And honestly, it's not because I don't know. Me and hubby, we go to bed about 4 hours after the kids. In that 4 hours, we regularly walk past Monkeyman's room (his door is open at night). I can also hear him from our room (also open door, and they're less than 2m apart). I check on him regularly EVERY night before I go to bed. Since his birth, always. So in 5 years time, would I not know if my child is a regular snorer? I know for a fact that Monkeyman DOES snore when he is ill with a cold or sinus. But NOT on normal, healthy nights. Wouldn't I have known that he snores, if I know he snores when he's ill?

The very funny (or weird) thing is, that AFTER the adenoidectomy operation, Monkeyman has gained a nr of those symptoms!!! Like:

• Snoring
• Gasping or choking at night
• Pauses in breathing
• Flexion of neck at night (sleeping with head arched backwards)
• Cranky behaviour late afternoon

I'm not listing depression or moodiness, because it does look like those are getting better as his fatigue is improving (they weren't there before the op). But just how strange is this? He had 4 out of 25 symptoms before the operation. Now, afterwards, he has gained another 5, leaving him at 9 out of 25! Most importantly though, is the fact that he has GAINED snoring!! Why??? What's going on???

We have another month to figure this out. It's really just all very strange, don't you think? At least, for now I'm focussing on the fact that he IS better than last week, and so much better than 2, 3 and 4 weeks ago. Let's keep our fingers crossed for more improvements in the next few weeks.