Two weeks ago we saw Clark's pediatrician. She said he had a "slight cold" and if it got any worse to come back and see her. It got worse. I tried to schedule an appointment last week but because of unwillingness on the part of the appointment clerk (and her supervisors), because of a small, manageable, insurance issue (I secured the referral required for the appointment weeks ago), Clark was unable to see a doctor. I thought it was illegal to refuse medical care, apparently someone (read: the appointment clerks at S&W Killeen pediatric clinic) is unaware of that. Yep, I just called them out. As much as they've jerked us around they're lucky that's all I'm doing...for now.
Fast forward to today... This "cold" isn't getting better and Clark feels horrible. I called the Temple S&W Pedi clinic last night to try and get an appointment. --They were amazingly nice, by the way-- Killeen clinic could learn a few things from them. She informed me that they never refuse a patient. Unfortunately they were booked last night but the clerk gave me 3 options. (1) I could call back throughout the night to see if they had any cancellations. (2) She would schedule me an appointment with a pediatrician for today. (3) Or there was a walk-in clinic that opens at 7 that we could come to and see a doctor right away.
I was torn, in one breath I want to transfer care to a clinic with courteous staff. But in another, I LOVE our pedi at the Killeen clinic. This woman is pretty amazing, our first appointment with her she walks in with a hand full of hand-written notes about Clark's medical history. Also, she called me on a SUNDAY to let me know some information regarding some things Clark has coming up in the future. Who does that? Love her...loathe the office staff. So I'm torn. For now I'm sitting on it.
We opted for option 3. It was a good choice, they got us in within 30 minutes. The doctor impressed me (I was worried about that). She gave Clark a very thorough exam and informed us that it was likely a sinus infection and he'd need antibiotics for the next 2 weeks. Uh oh..I just remembered we have surgery in 2 weeks.
As we're heading back to Killeen, I call nurse Emily (yes we have her direct number! TSRH is amazing) at Scottish Rite to let her know that Clark is sick. She told me that this would push the surgery back but that it's ok, she would talk to the anesthesiologist, find out more and call me back. I got a call-back within a couple hours. The anesthesiologist said because of Clark's history, etc that we have to wait no fewer than 4 weeks. I feel good about this. Her reasoning is sound and pretty much echos how I feel. (1) He's very small (2) He's a lung baby, he and his airway need time to heal from the infection before surgery. (3) He's got to go into surgery at 100% to lessen the chances of him getting stuck on the ventilator.
This surgery will require intubation and for him to be on the ventilator. Ideally, as we learned with his hernia surgery, he'll come off of the ventilator immediately after surgery. What's a surefire way to scare the mother of a preemie-previously intubated-small for age-lung baby? The idea of her baby staying on the ventilator any longer than absolutely possible. Emily will call us on Monday to check on Clark's status and try to reschedule the surgery.
Of course, rescheduling adds a whole new layer to everything because I've already booked a hotel, Clark has 2 other appointments during the tentative week that we're rescheduling, etc etc. It's always something, but I'm here, Clark's here and I can handle it.
This is already an insanely long blog post but I wanted to mention that today I found the courage to go back into Clark's NICU blog and read it. Suffice it to say, I was humbled and have a renewed outlook on our current situation. The hip stuff is hard, it isn't fun.. but it sure beats pseudomonas, a swollen baby on the brink of death and 100 sleepless nights.
We love this little boy so much and we appreciate each and every one of you who take the time to read this blog and send up prayers on his behalf. We are thankful to God every day that he sent us Clark and has entrusted us to care for him. Please pray for Jeramy & I, too, that we can do our very best every day for Clark.
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