Argh...I'm so over it!!!

Yeah, I'm fed-up. I'm tired. I DON'T WANT TO DO THIS. I can't emphasize it MORE. I don't like going to the drs. I don't like putting my children through (sometimes painful) tests. I don't like driving around to appointment after appointment. I don't like dragging a baby around, disrupting her nap-routine. I don't like sitting in waiting rooms, especially not with an active, energetic, stubborn baby that just wants to walk around. I don't like drs needing to call me, or me calling them. I hate getting calls, but especially not from people I deem have much more important things to do than call me.  I don't like the waiting-for-results. I don't like the stress. I don't like the worry. I don't like the nightmares and lack of sleep. I don't like ANY of this.

Sorry. Just thought I'd put that out there, first. Because yes, I know people are as fed-up of me and my "updates" on issues as much as I am fed-up of having to do it, and having to go through it! I'm not suffering from Munchausen by proxy, I assure you. Even though at times it might sound like it. I desperately want to stop this run-away train, and just say "F...-it, I do NOT want to be on this train anymore, I just want to believe my son is fine, so that we can just go on living our normal (busy) lives." (I apologise for the "f" word. I don't easily swear. I hate swearing. But gosh, sometimes it really does describe how one feels better!)

I honestly just want to drop it all and say: Ag, my son is FINE. He's NORMAL. He'll be okay! Why why why do we need to do this? I do not have the time. I do not like doing this. My son doesn't like it. His dad hates it! Why why why do we do this to ourselves??? To our precious son??

Because the pulmonary hypertension scared the sh!t out of me. Because I realised, with a huge shock to my system, that ignoring the tiredness for more than 2 years, has caused my son to develop a very, very serious heart-lung disease that might have cost him his life. That at the very least, could've had serious, life-long implications to him. This was too awful, to just ignore. So even though I still believe that whatever is at the root of this problem, is probably not a life-threatening thing, I'm scared that leaving it again for 5 years in the hope that things will change, might bring along another awful disease. What if I leave it, and whatever is at the root, causes pulmonary hypertension AGAIN? Will Monkeyman be able to heal from a 2nd bout of it? Will his heart be able to? Can I take that chance?

So here we are. Looking for answers. Though we desperately wish we could just ignore it, and be HAPPY that the pulmonary hypertension is GONE!!! I'm still amazed and humbled by that. :-)

So where are we exactly? Well, we heard from the ENT. He couldn't get hold of the cardiologist for WEEKS. And when he did, she didn't have Monkeyman's file with her, so said she'll phone him back, and didn't. He had to phone her again, etc. It tells me that without a file, she didn't know who Monkeyman was, what his problems and diagnosis were, and she probably didn't care. Which is fine. But then we don't care about her (feelings) either.

So, we didn't cancel the 2nd opinion cardiologist appointment we made months ago, when everyone urged us to, because his current cardiologist didn't get back to me about why Monkeyman's tiredness would've gotten so much worse after the adenoidectomy.

That 2nd opinion cardiologist visit, was on Friday. This is going to turn into a looooong post, sorry.

Firstly, she was very thorough, and we liked her very very much. Even though she doesn't think it's the heart, she didn't wash her hands from us like the other cardiologist did. She took over his care, and she's going to drive this thing!!! Yay for fantastic doctors!! (Isn't this supposed to be the job of his primary care physician, which at his age should be his peadiatrician??)

Unfortunately, she (the pediatric cardiologist) also, like us, doesn't believe he's 100% fine, and that the tiredness has a cause that must be found before he starts grade R (similar to Kindergarten in other countries) next year January. She clearly was of the opinion that our pediatrician, previous cardiologist, and various drs we've seen over the years, have dropped the ball on Monkeyman. That they should've been much more thorough, YEARS ago already. :-(  I guess I should've been more adamant. I should've been his advocate. *mommy guilt kicking in*

A scary thing (to me) was when she tested his muscles. It suddenly dawned on me that I never thought it could be muscular dystrophy! How scary. But thank goodness, his muscles were absolutely fine. I guess this also excludes low muscle tone, which alot of people mentioned to me. I always had to say no, I don't believe it's that. Unfortunately. Something so easily fixable (in most cases), and so "normal" for kids to have. It would've been the best of diagnosis's. But my daughter had that, and the symptoms and "look" of it, just aint the same. Monkeyman's tiredness is way different, than just having muscle weakness. Anyway, I take it that the cardiologist's very thorough examination excludes this now for good.

So here's the crux of the visit (bullet pointing it for an easier read):

• Pulmonary Hypertension definitely gone, just a few small signs left - nothing to worry about
• EKG is perfectly normal this time (last time it wasn't due to the PH)
• Heart isn't enlarged anymore ( )
• Heart structure definitely normal (no leaky valves, etc.)
• Heart wall is thinned, abnormally so at places (for his age), and it has to be followed up yearly, as it could cause problems for him in the future - I'm trying to google this, but information on it is VERY scarce, in the absence of other congenital heart defects (Why oh why do we get all these rare conditions in our children??????)
• She couldn't visualise the one lung artery (on the sonar) where it goes into the lung. It might indicate a problem in the lower lung. Which might be nothing, or not. I don't think it showed up on the x-rays, so hopefully it's just nothing. Hopefully she will get back to me tomorrow, on the results of the x-rays.
  
  So the plan of action:
• She ordered bloodtests, including iron, though she doesn't believe the tiredness is from an iron problem or iron malabsorption - we'll do this in the next few days.
• She ordered urine tests that has to be first morning urine, 3 days in a row (what a schlep!! So not in the mood for this, NOT looking forward to it!).She believes he might have an overgrowth of fungus because of his chronic omeprazole for the GERD. Or that there might be a constant UTI causing the tiredness. I honestly don't see how a UTI could cause tiredness for 5 years, but never develop into a fever or have any other symptoms? Or doesn't go away when given a/b's for another disease? Though, he hasn't had a/b's that many times, just about 3x or so. And it's good that they do the urinalysis, for the other things they test for (like kidney function). And in any case, yesterday (just as luck would have it!), Monkeyman called me to say his wee looks "weird" and "orangy". I wanted to ignore and tell him it's just fine, but thought better of it and went to have a look. And it was pink! Aijaijai. Sigh.
• She ordered chest x-rays (already done Friday), which showed something, but the report is greek to me. I only understood the word "geringe" which means that whatever it is, is a slight problem. It didn't seem serious to me, and it didn't seem to indicate what she thought might be the problem. So I guess another thing that's been excluded (yay!).
• She's going to order a sleepstudy in a week or 2's time (waiting for her "person" that works with it to come back from leave). Like us, she believes sleep apnea might still be present, despite the PH resolving after the adenoidectomy, that might've caused obstructive sleep apnea.
• She says my mom's history is very interesting (unlike the other cardiologist who ignored me when I told her about it). Sadly she agreed that my mom wasn't handled correctly, something we all believed and knew but were unable to change, so so so sad. She says my mom's history, with my husband's sleep apnea, gives her some ideas, on what to look for.
• She says it might even be a mitochondrial disease. Something that's recently being diagnosed more and more in children, and Monkeyman's symptoms points to it being a possibility. But we'll get there if all the other things have been excluded. Personally, I'm not (yet) scared about it being such a serious thing. His symptoms just aint bad enough, iykwim? I've read a few moms' blogs who had to deal with this in their children, and you just can't compare my (little) complaints about Monkeyman with what they have to deal with.
• Also, she wants him to have a scope at some point, to check for sores or fungus in his stomach, which might explain the drain on his iron stores. It probably won't be the cause of his tiredness, so it's not an urgent test to do at this point.

So ya, you can now see why I started this whole post the way I did. I do not want to do all these tests. I don't want to go through all of this AGAIN. Really, I feel like crying. Not just for my son, and him having to go through all of these tests. But for me, having to do all of this. My plate is FULL. I don't have time (or want to make time) for tests and appointments and waiting rooms. I just want to enjoy the fact that he is so much better, and that the PH is gone, that the school exams is done, that Boeboe passed (yes, a whole other post I still need to do!!) and that most of the extra curricular activities has been stopped for this term. So just when life was supposed to slow down and get better after the stress we've been through for 4 months, I now have to do this. Aarrgghhhh. (And yes, I'm purposefully NOT focussing on the fact that we're indeed looking for something to be wrong with Monkeyman. I honestly cannot deal with that now. I'm gonna be optimistic and just concentrate on excluding instead of finding things).

I'll get to Boeboe's post in time. I know, I owe a huge update on her. My focus has completely shifted from her to Monkeyman for 4 months now, and I do get queries on how it's going with her. Sorry, I'll update as soon as I have time. It'll also be a long post, so bear with me. Thanx for all the support, and the prayers and the interest in our (usually very boring) lives.