It was about 24 hours after her last doses of those two that she was heading back to the ER where they started her on a fifth antibiotic, via IV. That drug happens to be fairly corrosive to veins, so midway through our stay, we lost the IV, and after two good, but failed attempts at putting in a new one in a more robust vein (no hands or feet for this drug!), we were given the option of sedating her to put in a PICC line or trying an antibiotic that could be administered through her g-tube.
Since not even the doctors there really wanted to sedate her in her state when there was another option (besides the fact that she had just finished one of her bolus feeds, so it would require a move to the PICU and an eight hour wait), we went with the g-tube med.
The problem is that the culture on her lung serum came back with a strain of pseudomonas that is only 50-60% susceptible to the antibiotic we were using.
That's not quite enough for anyone to be satisfied, so they added another antibiotic that is administered via nebulizer machine. They gave her one dose Wednesday morning, with no negative response (there can be a severe heart reaction in some patients), so discharged her that afternoon with prescriptions for both antibiotics to be taken at home.
Problem is that the neb drug is only covered by our insurance when it is provided by a "specialty" pharmacy, and apparently the pharmacy at Gillette Children's Specialty Healthcare is just not quite special enough. Another hospital in the Cities is, though, so the prescription was called over there to be filled and sent to us by Thursday morning. That meant she would miss a dose, but that was going to be okay since she has some coverage from the g-tube med. Except, when we called Thursday to follow up, they were dealing with needing pre-authorization, which we were told could take 10-14 days. How do you reasonably explain to the insurance company that it's got to be a *whole* lot more cost effective to approve an antibiotic that can be administered at home than to have her end up back in the ER for another hospital stay?
We got a STAT put on the request, and were then told on Friday it would be only 72 hours (business hours) before we'd get the approval. That's much better, but doesn't jive well with the fact that the g-tube med we were given ran out Saturday night, meaning we'd have at least two full days, maybe three, with no antibiotic, and remembering that the first time it took only 24 hours before she was back in the ER, we weren't very satisfied with that option.
This is where I'm reminded that as a parent, it's MY job to keep all of this straight in my head, and to, as they say, advocate for my child. I spoke about this over the phone with the doctor who was prescribing the medication, and in response to my question, she suggested we get a few more days worth of the 50-60% effective drug in order to keep things suppressed enough to get the other one started.
So that's what we did, and mid way through the day Tuesday, the nebulizer med arrived in an incredible box, with two layers of packing surrounding the two ice packs sandwiching the little bag of medication with a retail value of over $2300. Yikes!! But still, that's a whole lot less expensive than going back to the hospital so they can give her the same medication there!
Here's our girl, taking her first dose of her very expensive medication which should, hopefully, clear out whatever junk is still growing in those lungs and give us the potential for a nice, healthy, summer season!
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