ENT follow-up

The much promised ENT post (typed it for about 3 days now!). Sorry, life is extremely hectic at the moment. It'll calm down soon, so I'm just soldiering on day by day until things normalises again.

So earlier the week, the day after the cardiologist visit, Monkeyman had his follow up after the adenoidectomy. The ENT was very happy to hear that the PH has resolved. He said the fact that the pulmonary arteries is shrinking, is a clear sign and the one that they usually see.

He was quite surprised though that Monkeyman was still tired. He again said that he should've showed a big improvement in energy levels, and that it's really strange that he didn't. He asked me some questions, like how he is when we go to the shops (before and after the adenoidectomy), if Monkeyman vocalises if he's tired, etc.

He said that Monkeyman's behaviour is abnormal and does indicate that something else must still be wrong. He said it's a strange thing for a child, to be so tired, and to vocalises it at this age is very indicative. He said that it's probably not acute, like leukemia or something similar, because then he would've been dead already. Since I noticed the tiredness 4 years ago already.

The POA is that he's going to contact the cardiologist and peadiatrician, to form a team to come up with ideas on what they could test for. The one thing he's going to propose from his side, is that they test his iron levels after 3 months' supplementation (so in about 6 weeks time) again. If it has recovered back to normal, then fine. If not, they might be on to something, like an iron malabsorption. This makes sense to me, because I've been wondering why on earth would his iron test low. It tested normal age 2, so what would've made it drop? The cardiologist said maybe worms, but the ENT said that would've showed up in his iG bloodtest result, which it didn't. Monkeyman loves meat, and unlike the oldest 2, has had a good diet all his life. Vegetables, fruit, meat, carbs. Everything. He eats it all, and a good amount every day. It is my one child I never have/had to worry about eating. Not what or how much.

He also suggested that we could admit Monkeyman into ICU for one night of observation, to see how low his sats goes. Personally, I think this would've had value before the adenoidectomy. But if there was still severe sleep apnea that causes desaturation, then I don't believe the PH would've resolved. So personally, I believe that if there's still sleep apnea, it's not causing him to desat.

Anyway, so the ENT is being really fantastic. He could've, just like the cardiologist, washed his hands from us because he did what he could/had to for Monkeyman. His ear/nose/throat area is dealt with. Just like the cardiologist said her heart/PH area was dealt with. So ya, I'm sure the pead will pick this up and run with it eventually, but having a dr like the ENT initiating it, gives it so much more momentum and force and validity (is there such a word?). I already feel like a bit of a paranoid mom again for trying to tell doctors that there's something wrong with my child. :-( I absolutely HATED that feeling with Boeboe. And when a doctor basically tells you that that's what he's thinking, it just kills you inside. It squashes all hope and resolve you had in helping your child. So when a dr that didn't even have to, believes you and tells YOU that he thinks there's something we need to find.... it just warms my heart for the support and trust.

I told Monkeyman's teacher earlier this week about the resolving PH, and she was so happy for us. Then she asked me what we're going to do about the tiredness. And his paleness. She said he's just not like other 5 year olds. He prefers activities where he can sit down. Exactly what I've been saying the past 6 months. He'll rather play cars, or in the sandpit, or build puzzles, or read a book, than run around with the other boys. And she said you could see in his face, he goes all pale, when he gets tired. And it's true. I tried to tell the one doctor this once, that I can see it in his face. I found it difficult to explain. It's as if he draws into himself. His face muscles goes taught. Withdrawn. Not relaxed or happy. No smiles. His voice also changes. The lilt in it dissapears. It's all tired sounding and flat. It's difficult to say. It's just something I know. As a mom. But, even though I've walked this road with Boeboe before, I still doubt myself. So it's kind of a relief to know me and his dad aint the only ones picking up on this. On the other hand, it's made me sad though. I was on such a high after hearing the PH is gone. But now I'm a bit sad to know that there's still something wrong. Maybe something easily fixed. Maybe not. The unknown road. We're still not off it. I honestly don't know if I have the strength for this anymore. But what choice do we have? I can't just leave it again like the other times throughout the years when I asked drs about his tiredness and they just shrug when tests comes up with nothing. Not after his teacher told me this week that I should not drop this. That I should keep on looking for answers. It's fantastic to have the support of the people around you that knows your child, but it's also difficult to go back to playing ostrich when other people has noticed it as well.

Tonight, Peanut was up late and got tired while she was crawling, so she just laid down flat on her tummy with her cheek on the carpet. It reminded me painfully on how Monkeyman was. Exactly like that. But without a reason. Doing it a couple of times a day, every day, without needing a nap. Without being tired from a late night or teething or missing a nap. Peanut hasn't even done it once a week since she's started crawling. She just doesn't have that tiredness that Monkeyman had. Thank goodness. But it does tell me how a baby should be, and how Monkeyman was. Quite a difference.

So ya, we'll hear what the ENT suggests next, and give iron supplements in the meantime, and prepare us for a loooong road. Probably months and months before we might have a few more answers. I'm going to try and work through this better than I did with the PH. So that I can continue with life and not live like my son has no future. I was in a dark hole with the PH sword hanging over our heads. I can't and shouldn't continue like that. I'm a worrier by nature though, so it's difficult to shrug it off. But I'm going to try my darndest, and spend some happy times with the kids. I can feel spring in the air, and that is enough to lift my spirits already. Now, I need to sleep. Tomorrow is a busy busy day!! I'm taking Boeboe summer-clothes shopping, and we have family visiting for this week.