Surgery went well today.

The pulmonologist, Dr. Hysinger (who is not Paige’s regular pulm), confirmed her lungs are clear, he was able to take a small culture from the left lung but other than that nothing. 

I met with him first, about 45 min after she had been back there. (His part, the bronchoscopy was quick 5 min.) He shared that her lingual tonsils are very large. (She had her tonsils and adenoids removed at age 2… when I spoke with Dr Knollman, he rattled off the stats related to this lingual tonsil surgery being the next surgery for a percentage of individuals DS… but that’s escaped me.) 

He asked how long it takes her to get over illness — that’s part of why we are here. It’s always 4-6 weeks and sometimes as long as 8 weeks. She’s clear for a month or two if we are lucky, and then the cycle starts over. He’d like us to work with Dr. Hjelm (her pulm) to find ways for her to clear and get over infection in half that time… yeah, me too. But we sure have done/do a lot… I’d love to hear something we haven’t tried. 

At 2:45, I got called back to talk with Dr. Knollman, her ENT. Called Gary to listen in. 

He said Dr. Hysinger probably spoiled his big find already, those lingual tonsils are huge and probably a major reason for her severe sleep apnea persistence. He was unable to perform a DISE with the size of the lingual tonsils. And he said while patients with enlarged lingual tonsils can be candidates for INSPIRE, they cannot be this large.

He said he’d like to see her for a follow up in a month. See how this surgery is helping her before discussing next steps. 

If sinuses are doing well, we can then discuss the lingual tonsil removal. Would need to remove those (it’s not a pleasant 7-10 day recovery with the sore throat and scabs), let her heal, do a follow sleep study and also do another DISE to know if she’s a candidate for INSPIRE (the hypoglossal nerve stimulator implant). I’m not sold on INSPIRE, but I was hoping to know the root of cause of her sleep apnea and know if she’s even a candidate. 

Today, he was able to reduce the turbinates, take cultures from ear and sinus, clear out lots of mucus, open the sinus cavity, and removed a bit of adenoid tissue - there wasn’t much there. (It can regrow after T&A removal but hers really hasn’t.) 

Paige came out of anesthesia slowly and steadily. She requested Chick-fil-A as I knew she would  😉 There are some things you can count on in life… this is one of them. Her nasal bleeding was quite heavy and consistent - after 3 rounds of a nasal spray (Afrin), it slowed enough for them to not be concerned, thankfully.  

We are thankful for Child Life helping distract her during her IV, for the wonderful nurses and the ability to use an ultrasound when the first stick wasn’t taking, for all the kind and helpful people throughout the day, for the steady hands and strong work by her doctors and the anesthesiologist and overall an uneventful surgery. We’re thankful that the procedures they were able to perform were completed successfully and went well. We pray that they help Paige long term — that inflammation in the sinuses stays down, that she can clear bugs, and she can BREATHE! 

We know there is another surgery coming and while that is not something we are excited about, we know she can do hard things. She’s proven it time and again, and we hope one day she will have relief! 

We are staying the night just to be safe. I’d like to make sure she is stable through the night, and Cinci was so very accommodating offering this ahead of time given our distance.  

Thank you for your continued prayers. ♥️

They are felt.