I've been meaning to post Lydia's medical update since her comprehensive clinic visit on July 3, 2024. The notes have been written and laying next to my keyboard since then. I've added images and more specialists throughout the year. The stack keeps growing. I keep intending too.
I held a lot in for 6 months. I finally shared some. It got easier. She taught me it was okay. She's unbelievable. The way she handles things with admirable resilience - and I wish she didn't have to experience a single day of any of it.
Med changes. New diagnosis. Providers retiring. Hospital customer service declining. Surgery postponements. Pneumonia. Always pneumonia. It was a rocky year and we trudged up that mountain and she conquered another hill. I really hope she gets a chance to just ski downhill someday and get a break from the climb.
Shall we go specialist by specialist?
ADHD: Provider changed because of me. Provider changed because of retirement. New provider for Lydia is a psychiatrist, seems good. New provider for only parents is a psychologist, has been helpful for us and our home routines and approach. Not new provider but so hard to get into, a psychologist for Lydia. Who knew it was going to take all that and meds! We've switched meds about 3 or 4 times in the last year and may be in a good place for awhile, so long as we can get them. After several years we've finally run into the ADHD med shortages. In the past month we've added an SSRI to Lydia's meds and are waiting as we titrate up to know how it's working. The thing about these meds is they can cause the same behaviors they may help treat?!?!
Cardio: All her heart repairs are stable and functioning as they should. Her aortic arch repair remains large and over-sized for her body right now. It presses on her trachea creating more pulmonary issues for Lydia but you don't have open heart surgery to rework a repair in order to have a right shaped trachea. You live with the misshaped trachea and deal. We are waiting to have a CT Scan when she goes in for ENT surgery - which has been postponed 3 times because of pneumonia which Lydia is more prone to because of her pulmonary issues, vicious circle.
Endocrine: Lydia remains on growth hormone therapy and will until she reaches puberty. One shot a day, six days a week since she was 5. Her "catch up" growth is over and she's really leveled out to a normal growth pattern of a couple inches a year. One of our favorite providers in Endocrine retired and we'll miss her a lot. She's known Lydia for nearly 10 years. And it was she who sent us to our latest specialist...more in the next blog.
ENT: The life long pain in the neck for this kid! She's had ENT issues...and surgeries...since birth. She produces so much snot, wax, phlegm, sputum, whatever your name of choice is for the gunk that can come out of your head, she's got it. We've had drops and rinses and inhalers and more. Ear tubes, let us count the pairs. This year Lydia was referred for allergy testing - nothing, nope, she's fine, just the seasonal kind. Her surgery that just won't happen is for ENT to replace her "T" shaped ear tubes and do an exploratory scope to see if any other interventions are needed. Those could be any of the usual things for Lydia, adenoids that grow back,inferior turbinate reductions, again, etc. Every illness over the last two years seems to turn into a sinus infection that turns into ear infections that turn into pneumonia. If any of this helps, I'll take it. Say a prayer for no pneumonia or Covid or anything else in August so we can finally have this surgery a year after it was first scheduled!
Immunology: all good, kind of. Lydia can have all vaccines and they kind of work. When measuring the effectiveness of a vaccine it's done by measuring titers, basically the amount of antibodies to fight the infectious disease. Lydia has low titers for pneumonia, has had the vaccine and a booster within 2 years.
Pulmonology: With the number of times she's had pneumonia in the past year, we are considering a prophylactic antibiotic. The urgent care doc will suggest amoxicillin and I laugh and say, give us the augmentin-calvunate with a steroid, an inhaled steroid, ear drops and a nose spray please. Again, we watch and see how things change and how her heart repair is impacting her. There is a continuum here and it's not lost on me. Remember I go worst case scenario on things...so Lydia's breathing, I fully understand that the way to solve big bad lung issues is with a trach and no part of me wants to ever go back to trach life, but just how I have to steel myself for a 3rd open heart surgery someday, I also steel myself for this. Pray it never happens?
Speech: Easy Peasy Lemon Squeezy. All good, supportive of Lydia's IEP initiatives in speech.
The real easy normal typical stuff? Eyes are good, still in glasses. Teeth are good, working through orthodontia now. Pediatrician - she retired and we meet the new one tomorrow. I keep them around for FMLA paperwork, which I now realize I forgot to request. Shoot. You'd think with all these specialist I could get one of them to sign FMLA paperwork - reminder: they used to. That's another story for another day.
Goodnight. I'll tell you about the new specialist soon. We see the majority of these specialists in July, so here is hoping for no new things this year. Let's just keep 2025 as is, except for that surgery in August!
