Hi! So, there have been some developments since my last post. Harlie had her follow up appointment with her ENT in DC on Wednesday. One of the dressings had not fallen off yet. He removed it and didn't love what he saw. It appears that the growth (abscess) is already growing back. He had his wound care nurse come and look at her wounds and give me some directions on how to care for them. We know her from years before, so she knows Harlie and her past issues with wounds.
While we were doing wound care, her ENT went and spoke to the infectious disease (ID) docs. They all agree that she needs more aggressive treatment. A few days after my last update, I received the labs from her cultures - Staph bacteria. Unfortunately, Harlie is allergic to the oral meds that treat Staph. So, she needs IV antibiotics. He offered to admit her right then, so she could begin IV treatment that night and then while inpatient, they could give her a PICC line so she could come home and get IV treatment here. She's had a PICC line at home twice before, so we are familiar with this process.
However, Harlie's nurse, Brandy was with us and I didn't pack anything, of course. So, being admitted right then would have been really, really uncomfortable and logistically challenging. I said I needed to take Brandy home, and pack, but I could come back anytime (even that night). He said that they would call me and tell me when to come back based on bed availability. So, we left.
Traffic was the worst leaving DC that I have ever seen. The entrance to 395 was completely closed and forced everyone to detour, which was just complete chaos. I really don't know how people deal with that traffic all the time.
After we got home, I got an email from Harlie's surgeon in Boston. He asked me how she was doing. I replied and gave him an update - that her ENT wants her to start IV treatment. He replied quickly and basically said that he worries/expects that this infection will not fully clear unless we remove the joints. He said they should come out sooner rather than later.
I really don't know how to express how devastating this would be. If he needs to remove her TMJ joints, it means that her surgery in April was for nothing. All that bruising and bleeding and pain - for nothing.
Not to mention, the risk of losing the little airway we gained because of the joints. Her stronger voice, her recent ability to wear a speaking valve, even her cap for small periods of time - all of that could be lost.
Would we even be able to try it again?
I just can't. The thought of traveling back to Boston, for another jaw surgery - but this time to go backwards?! No forward progress to look forward to, no forward progress to help keep us all positive. What do we tell her?! How do we explain this to her?
I just can't.
Regardless, she needs IV treatment asap. At this point, I don't see the harm in at least giving the IV antibiotics a chance. Maybe, by some miracle, the staph is really only on her skin and not on the joints inside. I haven't spoken with ID yet, so I don't really have a lot of information.
Anyway, on my way home from DC that night, they called and told me that I should expect a call sometime late morning on Thursday, letting me know a bed was ready. The next morning, I packed and got all ready. I thought about going on ahead and driving towards DC. Maybe we could stop at Tyson's Corner, or something so we were that much closer when they called. I mentioned that to Tom when he called that morning to check on things. He said, no, what if they call you with a change in the plan. So true. So, I didn't leave. Then they called and told me that insurance denied the hospitalization. WHAT?
It was at this point that I completely regretted my decision to drive home that afternoon. Maybe if I had just stayed and let Brandy drive my car back, everything would have been fine. Ugh. If only I had more information! I just had no idea that could be a consequence!
I gave him all the reasons why this is wrong. I told him that her doctors needed to try again. This is another problem with fragmented care - the doctor that truly knows what's at stake is in a different state and not a part of this insurance pre-approval process. Despite how devastating the consequences are to Harlie and my family, the financial aspect should mean something to them. I mean, the cost of removing the joints would be way more expensive than a quick few nights in the hospital getting a PICC line, hopefully avoiding the joint removal. But, they don't know that!
On Friday they called me to schedule her PICC line placement on Monday, as an outpatient procedure. They started her on an oral antibiotic in the meantime, although I don't understand this at all (after being told that she is allergic to all the oral meds that staph is susceptible to). She is scheduled for tomorrow, August 30.
I really know very little at this point. I don't know what they are going to put her on (maybe Vancomycin?) or for how long. Remembering what it was like with her previous PICC lines/IV treatment (also due to post-op infections) it takes some time to set up getting IV meds at home. I mean, I guess it could be done in one day, I just don't see how that's very likely. I don't know. I'm packing bags, just in case things change - again.
I want so badly to hope that somehow things will go her way this time. But, after we got home on Wednesday night I did her wound care (have to do it two times a day). And when I removed the dressings we put on that afternoon, I was shocked to see that the growth on the left side had gotten substantially larger in just a few hours. Despite my hope that IV antibiotics will help, it isn't looking good.
Well, this is all I have time for tonight. We have to be on the road well before sunlight tomorrow. She has to take a covid test first thing in the morning and we have to wait three hours for the results, then they can do the procedure. Under anesthesia, by the way. After the last incident - it is too soon for her to go back under anesthesia.
Oh, I have to tell you a funny story before I go. On Friday morning, I was running an errand with Harlie and we were headed to the car when the trash company arrived to collect the trash. She asked me if she could watch them. I said, of course. So, she walked to the center of our driveway and stood there, watching them. After they had collected our trash, she gave the guys a smile and a thumbs up. Haha! Something about that kid just cracks me up. Despite all she has going on - and her stuff is some serious stuff - she really seems pretty content with life. Even giving a silent "good job" to the trash collectors. She is a funny kiddo.
Oh, and one more thing, we were finally able to renovate the kids' bathroom to make it more Harlie friendly (I'll have to update on that later). When we went to Maine to pick up Cooper from summer camp we went into a cute store and I saw this little sign, and thought of her (and the boys, too).
Okay, I will update tomorrow with how things went - or didn't go - or whatever the hell happens.
As always, thanks for the love!
Christy xo
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