Wednesday, May 3, 2017

Big Doings for Liam

Liam is eight now.
That is a pretty big time is you are a kiddo born with a Cleft lip and palate. Eight years old means that it's time to get ready for the Almighty Bone Grafting Surgery. Not all kids who have a cleft palate need this surgery, but kids who have a fourth degree cleft do. That Fourth Degree terminology means that Liam's cleft goes through his upper jaw line, his Alveolar jaw. We have been waiting and watching adult tooth eruption and jaw growth for the timing of this surgery and we think we have things narrowed down.
Last month Liam and I traveled from Florida to Philadelphia to meet with his Cleft team, just like we do every year, and we laid out a plan. Everyone coordinates with me calling everyone to keep them in line and all on the same page. By everyone, I mean: The Children's Hospital of Philadelphia, the insurance, the PCM, the local orthodontics team, the local ENT and anyone else we nee to loop in. If this sounds like a part time job, and maddening and fruitless, it is. It absolutely is.
Here's the thing though, Liam doesn't like to do things easy. He likes to keep things interesting. So in addition to this whole bone grafting thing and needing braces for six months and all of that needing to be timed just right and coordinated across half of the country... He decided to display some hearing loss in his left ear when we were in Philly last month. Nice.

So we had to come home and find an ENT to run further hearing tests. Turns out his hearing is fine but he is going to need some tubes in his ears because (insert Charlie Brown adult talking sound here)  mwah mwah mwah mwah mwah ENT ear talk stuff about dimples in the ear drums, bone gaps, fluid build up..... whatever. I may have been a Nurse, but man the ears always bored the shit out of me- just put the tubes in already!
We schedule the surgery. Four days away at 8:00pm Liam hollers from his bedroom, "Mama! My face feels funny!!!" In my head I'm like,"That's an odd effing thing to say but Liam never complains about anything so I guess I better act like a Mom and check this out." Good thing I did. In the space of thirty minutes that kid's face had gone from normal to looking like he was storing a baseball in his cheek for winter! It was warm to the touch and sore and I knew we were in trouble but my family was visiting from Ohio so I didn't say anything because I didn't want to panic anyone. The child had Facial Cellulitis!!! OMG. So the next day, the swelling was worse and the redness you would expect with Cellulits was present and off to the Dr we went, the DR says it's from a spacer in his mouth. A spacer he has from having a tooth extracted. But a nurse in the office and I were like "....." So I was like "Liam we are going to the Dentist. We go to the Dentist. The Dentist was like, "Spacers don't cause infections, abscessed teeth do" (and thus the nurse and I were proven right) so Liam had an emergency tooth extraction and was put on a very powerful antibiotic for 10 days, his tubes were out off until tomorrow and his sister decided that freaking out over having allergies would be the thing she needed to do for 15 days (but that's a whole other blog entry).
 OH! And I totally get that I maybe should have gone to the Dentist first but Liam had absolutely NO TOOTH PAIN. I could bore you with how the infection had bypassed the nerve and made it into the buckle space of the cheek but you would stop reading. I made the Dentist tell me like 37 times how I wasn't an idiot for thinking it was a tooth because there wasn't tooth pain- she was laughing her ass off at me. I kept saying ,"I assessed every tooth!!! Every tooth!!! "
In true Liam fashion, that boy never once complained. Not about his little face hurting. Not about taking that terrible antibiotic three times a day for ten days. Not about being woken up at 4 am for ten days straight to take that stuff. Not about having to swish a horrible mouth wash to heal his gums from the tooth extraction. Not even when his cousin whacked him in his sore cheek with a pool noodle. He is a tough kid and he just takes everything that happens with courage and grace. He trusts me to help him though things. He listens to my explanation of how things are going to happen, how medicine will help him. He is the sweetest and bravest little boy. I hate so much that he has so may things to face in life. I am glad that he trusts me to help him through it all though, it is one of my greatest honors in life.
We did find out that he won't have to have any palate expansion in preparation for his bone graft, for cleft kids, this is a pretty big deal, it will dave him quite a lot of pain and frustration. I am not sure yet when this bone graft will take place, this was my last call of "Hey guys, wtf is happening?" to everyone, hopefully I will have some clarification soon. What is do know is that whenever it happens my son will handle it like a person much older than he is and the maturity with which he handles himself will both maze me and break my heart because he just shouldn't know how to handle those type is situations.

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