On Friday Namine had her ear surgery, where they replaced her ear tubes. They had originally thought to remove the tubes and leave her ears tube-free, but it made more sense to replace them. The new tubes will only last about a year or so, and they’ll re-evaluate Namine’s ears again when those come out. If she still needs tubes, they’ll put new ones in again. If not, they’ll just leave them out.
All that is well and good, but as usual, things aren’t that simple. Namine’s recovery on Friday wasn’t an easy one, and she woke with a barking cough, like croup. This isn’t the first time this has happened, either – every time Namine has a bronchoscopy, she comes down with it. We suspect it’s because of her already small airway, and the scope rubbing causes inflammation – similar to when she actually gets croup – resulting in the barking cough.
Namine still had the cough this morning, despite us putting her back on her nebulizer breathing treatments yesterday. So she had an appointment this morning, and she was prescribed a steroid to help with the inflammation. If that doesn’t do the trick in three days, they’ll re-evaluate her for another possible medication.
So that’s the bad news. But that’s not all – the good news is that Namine’s bronchoscopy and laryngoscopy both went well, and her airway looks good. For as small and narrow as it is, she has no trouble breathing, even when under a drug-induced sleep. Namine’s pulmonologist remarked that while under that heavy a sleep, when everything back there collapses, she shouldn’t be able to breathe, but she can. She just doesn’t understand how.
Namine’s speech therapist – and also the speech pathologist that examined her a short while back – requested that we ask them, during the scope, to see if Namine’s tongue could be clipped. Namine is tongue tied, and that prohibits her from being able to reach her tongue to the roof of her mouth. This in turn prevents her from making some sounds, like S. Namine knows how – but because her tongue won’t reach, she is limited to making a SH sound. But Namine’s jaw and tongue are already back farther than a normy’s would be, and clipping the webbing underneath her tongue would cause it to fall back and obstruct her airway. The resulting block in the airway would then need one of two solutions. The first is a trach. I’m sorry, but we just got rid of all that equipment, and we don’t want to go back to that. The second solution would be to wire her tongue to the floor of her mouth. That just sounds painful and bad, so let’s not go there.
Yes, Namine did have a jaw distraction, which brought her jaw (and her tongue with it) forward substantially. But her jaw is still smaller and farther back, and it always will be. It is the pulmonologist’s hope that as Namine grows, her jaw and airway will also grow, allowing for the eventual clipping. But we’re not there yet.
And let’s be honest. Namine is already learning to speak so well. She makes as many sounds as she can, and is doing more all the time – despite what doctors insisted on what she could and couldn’t do. So we’re content with leaving her tongue alone anyway.