another Boston spring
For I know the plans I have for you, declares the Lord…
Plans to give you hope and a future (and esophagus, palate, functioning airway)…
You will seek me and find me when you seek me with you whole (or 3 chambered defunct) heart
Lydia has been in a great mood since I came to visit. She gave me a great early mother’s day present with her big toothy grin, waving hand and dancing legs and seemed very delighted to have a visitor.
In recap of the past week, Will and Kate got hitched, Osama expired unexpectedly, and Lydia was extubated for not quite 24 hours before getting reintubated after her bronchoscopy last Thursday. The good news about her bronch was her lower airway looked decent and no big issues with her trachea. She does have pretty significant larygomalacia (literally a soft larynx) some swelling of her epiglottis and some granulation tissue on her vocal cords which thankfully are moving. ENT decided to extubate her afterward thinking a CPAP mask would be enough but after all night of blasting her little face off with her Darth Baby mask and frequent suctioning she collapsed her left lung and had to get her tube put back in. Her lungs are much better now and she spends most of the day just on pressure support doing all the breathing on her own. She also had a cardiac cath on Tuesday which showed she still had too much blood going to her lungs as some of the blood was going around the device they placed at her last cath. They put some more coils behind the device to help the issue and decided her shunt is an okay size.
Tomorrow we have yet another pow wow with all of Boston’s finest medical staff including but not limited to surgery, cardiology, cardiac surgery, CICU attending, child life, social work, nursing, palliative care team (my idea to get yet another opinion in the ever confusing egg vs chicken debate of treating Lydia), nursing and maybe a few nice cafeteria workers to provide some refreshments. I’m pretty sure if we had every specialty that has ever been involved with Lydia, most of the hospital staff would be present. At least we’ve yet to run into Neurosurgery and Oncology (knock on wood). I’m hoping to get some things finalized and the next stage set to go. As much as I love seeing her awake and playful, more surgeries are her only ticket to coming home and we most want her to be safe at home where we feel we can care for her without turning our house into an ICU. So debating right now: trach? trying to extubate again as if 3rd time might be the charm? surgery for her epiglottis to help her airway? push for esophagus surgery? stabilize for Glenn procedure (first stage) for heart? I think I’m leaning towards pushing for the esophagus surgery and then if she can’t extubate after connection, move to the trach but the worry is if her lungs are under too much more stress she may not be a candidate for the fontan procedure (the best heart surgery for her condition) and we’d be eventually waiting for a new heart. We’ve always known some day the possibility of waiting for a child to die to save ours could be very real but I still have high hopes the Fontan could give her a good 20-30 years and maybe there will be other alternatives to organ donation. [Side note: please sign the donation box on your license – you really won’t need those parts in heaven]. She’s a complicated but amazingly tough and resilient little cookie.
Here’s some happy girl pics and Lydia’s first ballet shoes courtesy of my 6th grade home ec skills and Martha Stewart crafts.
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