Surgery days are strange. I find a sense of calm and normalcy.
We go, Lydia gets her calming medicine, we say goodbye to a drowsy, giggling little girl that most people in same day surgery know from the previous 9 times. Dan and I take our usual seats in the surgery waiting room and one of us claims responsibility for keeping friends and family updated and one of us calls being the person to go get food and drinks. One of you has to stay in the waiting room in case the surgeons need to talk to you. We read, I crochet, this time we both worked and remarked at how much we got done in those 4 quiet hours.
It's afterward that isn't fun. Post op recovery and a night in the hospital isn't a great time but that isn't the part. The follow-up visits, waiting on all the right people to read the scans, the part where the surgeon tells you what else they found and then navigating another turn on Lydia's highway of medical life. That's the part I don't like.
Tuesday, November 2nd, 6:30am arrival at the hospital. By 7:15am Lydia is loopy from her calming medicine and we say "see ya later" and give her kisses. She gets sedated for her CT Angio Scan. Surgery follows.
By 8:00am or close to it Lydia is done with the CT Scan in radiology and was taken to the OR. They put her to sleep even more and get line access. Then procedures begin.
1. Bronch ... A deep one into her lungs, no biopsies, only imaging, maybe lavage and suction.
2. Bronch ... Upper airway evaluation.
3. Ear tubes ... she's graduating into a bigger kid size.
4. Any other intervention to ease her breathing and apnea...possibilities are supraglottoplasty and superior adenoid reduction...it's a game time decision!
Bronchs completed and we talked to pulmonology. Dr. Escobar reports that Lydia has been holding mucus in her lungs and there is some narrowing or floppiness deeper into her lungs. This is due to 22q11, heart issues and low immune system. Her aorta is pushing on her trachea just above where it stems to her lungs, that's a mild concern. All treatable, not fixable, but no plan yet. Dr. Escobar did the lavage, which is basically washing out with saline and then suctioning out the mucus and capturing a fluid sample for the lab.
ENT went next and finished many interventions after calling us to make sure we agree and consent to them all. Dr. Arganbright performed a supraglottoplasty to help combat the laryngomalacia which was almost a complete collapse of her upper airway. She said it was possibly the most severe before and after she's ever seen. Dr. Arganbright removed as many adenoids as possible without impacting Lydia's speech, though they are trimmed they are still obstructing. She also did an inferior turbinate reduction which is basically clearing out the nasal passages all the way to the back of Lydia's nose, they were almost completely blocked too.
By 12:30 or so we were in post op recovery with Lydia and she was waking up, very irritated and had pulled out her IV access. So then we get to go through putting in new IV access - yay - gah - sigh. This the 2nd surgery I've been in post op recovery, both times I'm requested to get in bed by Lydia so I get to roll through the halls of CMH with my girl, snuggled in bed with warm blankets. We check in to the 6th floor, which is awesome because the 4th is the cardiac wing and it's also nice when that isn't a risk factor. Lydia eat some sort of mac and cheese. Dan and I have BBQ delivered because friends take care of friends, especially when they've eaten that hospital food too many times themselves.
1 week and 1 day post op and Lydia is still is adjusting to being better able to breath through her nose, though it's not perfect, only improved. I think she's still adjusting to just the changes in her anatomy and how to handle things like cough and secretions. She isn't mouth breathing as much though, because she is going through fewer masks at school.
Lydia still has a chronic cough until we can find a treatment for her lungs. Treatment may be antibiotics, breathing treatments, or a cough assist vest. I guess we get to see pulmonology regularly now. This part frightens me. Lungs are important. Breathing is important. This is new and I don't like new.
Lydia's airway is much improved and more open than before so her breathing, especially when her head is downward, is less noisy. She's quieter when she eats and sleeps too, much quieter while sleeping. She's also taking her CPAP off during the night and keeping her O2 saturations above 95%. It was a struggle for her to stay over 92% with the CPAP on before surgery. She'll do another sleep study in a couple months to find out if she still needs it or not.
Lydia was receiving the CT Scan for her lungs and also for her heart. It gets a better picture of the aorta and the repairs she had at 11 days old. Dr. Shah called tonight, after 6pm, which just makes it seem more important to me but maybe he was just busy all day. The aorta looks good but is big and the patch has some dilation or enlargement. It's still in an okay size range but he will continue to watch it and monitor it. Lydia is being scheduled for an ultrasound because there was a comingling of contrast and non-contrast blood in her scan where the vein from her neck joins the vein from her left hand. This could be a false alarm or it could be a clot. So that's new. I don't like new.
All in all the surgery was a success, a major one concerning her airway, and we were handed a bit of new.
