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...