It's done. Thank goodness.
So Monkeyman went in on Thursday early morning, without complaint because he couldn't eat or drink or had to wake up early just to go and sit and wait and wait and wait at hospital. He is such a sweet, sweet boy. Having an aspergers child in the house, I can't help but appreciate his cooperation and non-defiant behaviour so very, very much. It makes his and our life soooo easy. I know, it's unfair that I compare him and his sister, but hey, they're siblings. It's impossible NOT to notice when one child screams her head off about everything, and another says "yes mom, of course mom" to every thing you demand of him. :-)
So Monkeyman got to the hospital and entertained himself on his tablet for hours and hours. And watched a bit of tv. We got to talk to all three the doctors before the op. The pediatric gastro-enterologist (GE) answered some of our questions, and really calmed my nerves. The ph-doctor came to discuss the procedure and what GERD is, etc. And was really surprised when she realised not only do we exactly know, and that our whole family has it, but that SHE was the one that did my, my eldest daughter and eldest son's ph-studies 10 years ago as well. :-)
Then came this really, really young looking anaesthesiologist. It scared my husband a bit, to trust our son who has had anaesthesia problems into the hands of someone looking like he hasn't even finished medical school, let alone specialised already! But somehow, I was ok with it. Thinking that maybe as a young dr, he would be up to date on all the newest things. And it turned out to be true!!
Before the operation, my husband went to a lot of trouble to contact the previous 3 anaesthesiologist that took care of Monkeyman (the GE doctor asked him to). My husband requested a list of all the medications they used, and we put all of it together on one page, which we presented this newest anaestheologist with. He listened carefully to the symptoms and progression that Monkeyman experienced every time he received anaesthesia. It was always the same. He would wake up confused (like any normal child), screaming, fighting, crying. Then, in time, he calmed down and sometimes would fall asleep. When he had the pulmonary hypertension, he slept for 3 hours after the anaesthesia!! Still, this is all normal.
Then, about 3-4 hours after the anaesthesia, everytime, the vomitting starts. Doesn't matter how strong the anti-nausea meds they give him during the anaesthesia. This continues for the rest of the day. Gagging and vomitting. Inbetween nausea. Then the physical tiredness. He can barely lift his head. Walking to the bathroom is too much to bear. He just lies down on the couch and doesn't move for hours and hours. About 6 hours after anaesthesia, the fevers starts. This continues for about 24 hours. Around this time, or a bit earlier, his nose starts to run, and it clogs up, with his eye(s) tearing. Exactly like a cold.
The worst isn't the symptoms, but the fact that you can SEE this is an ILL child. That something really is wrong. But when you try to tell someone, they all say "oh, but it's normal to not feel well after anaesthesia". Yeah. I know. But this was different. The first time, he was a small child of 2-3 years old, and we thought that he must've come down with a bug unrelated to the fact that he had anaesthesia. Just by chance having it at the same time as he wokes up from anaesthesia. The second time it was very fishy to see the exact same progression of symptoms. But again, I thought he must've came down with a bug at the same time as the procedure, or that maybe the pipe down his throat was to blame. He was 4. Then, age 6, he was really, really ill. We wrote it partly off due to the fact that he had pulmonary hypertension and an enlarged heart. But still, it really bothered us seeing him so very, very ill. So whenever someone just mentions a possible gastroscopy, we back-pedalled. We just didn't want to face the anaesthesia again. Our instinct was to protect our child, and putting him through anaesthesia went through everything we knew was good for him. Our instincts screamed.
But we knew at some stage it just simply HAD to be done, so when this dr said it's needed, we told her about our fears and experiences. So she asked us to get a list of all the medications used in his previous anaesthesia. I didn't even think it possible, but all 3 doctors came through for us. And when we presented the newest anaesthesiologist with the list, he said he believe that it's the gas that makes Monkeyman so ill. After the gastroscopy, the gastro-enterologist came to talk to us for quite a while. She's such a sweet, caring doctor. Anyway, she said that the anaesthesiologist believes that Monkeyman may have Malignant Hyperthermia. She said it 3 times! Accentuating it. Sounds like the anaestheliologist really wanted us to know that he thinks that's what it is.
Which makes sense to me, when I googled it. Malignant really does mean Malignant! It scares me big time, but at the same time I have this huge relief in me! One less puzzle to try and figure out!! A possible diagnoses. Basically, it means that a gene on one chromosome mutated, and makes the body unable to handle gas (inhalant) anaesthesia. The body basically kills itself within hours. Fortunately, Monkeyman haven't had a bad case of it (yet). Just the start of the symptoms, like the fever and exhaustion and nausea. He must just never, ever get gas again, then he'll be fine. Also, no cocaine, ecstasy or such. Which I don't really see as a concern at this point. ;-)
I know it'll be strange for people to understand the relief of knowing my child probably has malignant hyperthermia. But we had this sword hanging over our heads, fearing Monkeyman's next anaesthesia. It feels like we have removed that sword now. It's an enemy we could deal with, and we dealt with it. It makes me happy and relieved and grateful. Makes sense?
So, how was Monkeyman after the gastroscopy? Well, he was confused for about 30 minutes directly after the operation. He fought and tangled all the wires something terrible. Then he woke up properly, watched tv for an hour, ate, stood up and walked out of the hospital. :-) Such a trooper!!! No nausea until late the night. No vomitting. No fever. Unfortunately, still the runny nose, clogged sinusses and red and teary eye. So, so much better, but not all symptoms gone. No lying down all day, no abnormal tiredness, nothing. He ate and drank normally, unlike the previous times. Just a normally tired little boy who had 30 minutes of anaesthesia. Really just NORMAL. Of course, he only got IV anaesthesia, not gas. But he barely flinched when they put the IV in, so all-in-all, such an easy child. He asked for daddy to go in with him!!! I was really so happy about that. It's wonderful to see their bond. And I had more than my share of seeing my babies made to sleep. The only thing is now just this runny nose and teary eye and clogged sinusses. Why would anaesthesia do that to him? Is it still an allergy? Is it a reaction similar to the malignent hyperthermia? Is it because his immune system is lower than the average child?
The gastro-enterologist was very happy with everything during the operation. She found no structural abnormalities like constriction or growths or such. No clear signs of issues, except that the stomach was quite red. Abnormally, but non-specific red. She took biopsies of the throat, tummy and intestine. She also took a lot of bloods. She's gonna get a new baseline for him, since the last ones was over a year ago. And then when she was done, the ph doctor inserted the ph study while he was still under, so that he was saved that trauma at least (thank goodness for caring doctors).
He didn't like the little pipe at all. It bothered him quite a bit. As much as it did me. Shame man. But again, he was a trooper. I kept him at home, and after 24 hours we went to the ph doctor to take it out. She only gave us some prelimenary results, she'll send the full report to the GE dr.
The news wasn't good. :-( Even despite being on high doses of meds 2x a day already, he STILL had a positive GERD test. He refluxed 40x during the day and 20x during the night. 7 of those events didn't just rise up into the throat, but the contends of the stomach (very little acid due to the medication) moved right into his mouth. Poor little boy. No wonder he complains about nausea, and aspirated his stomach contends when he was on less medication.
So ya, our hopes of lowering his medication dossage was dashed. She said we simply cannot do that to him. It will damage his lungs to the point where it can kill him. :-( She said after 10-20 years of aspiration, it looks like smokers lungs.
Now we wait for the GE's call next week, to tell us what the biopsies and bloods shows, and her opinion on the reflux report. Ah well. I'm so good with waiting these days. ;-) Boeboe's long road has taught me at least that, hahaha. No really, I'm ok with the waiting. I remember how I used to complain on this blog about the waiting. But I've come a long, long way. I have learned patience and perserverance. And I know nothing ever gets to the point of being "fixed". So no point in being impatient. It's not a destination, it's a road with rest-stops along the way. Maybe, come to think about it, that was the lesson I needed to learn? Maybe that answers the why? So many people have asked or mentioned this past few years how come one family could have so many little rare issues they deal with? Well, maybe that was so that I could reach this point of acceptance, and just founding the joy in the here and now. Enjoying every day we as a family have together.
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