Wednesday, July 17, 2013

Anatoly Hospitalized part 5

Blur. We were in the hospital for 10 days that felt like eternity.

We had a new hospitalist at one point when Dr. Chaconas' shift ended: Dr. Vlasses. I really like him. We were happy with all of our doctors and most of our nurses. By this time I had been down to the financial office because were were admitted as self-pay. That's right: we're uninsured.

I should clarify–Karl's insured. His work offers Kaiser Permanente insurance but the package they have purchased is for single people. His insurance is moderately affordable but mine and the kids' is not. (In 2014, it will be illegal for them to charge 3 times as much for me for the pre-existing condition of being female.) We have looked at the pricing every open enrollment and simply cannot do it. We fall through the cracks. We can't afford insurance and we don't generally qualify for Medicaid. We are not alone, so many families are like us.

I got to work trying to qualify us for everything under the sun. Even now I am not sure if we got anything, we will see. I have a pile of hospital bills 10 thick right now, and I am sure more on the way. They are sort of an abstract thing seeing as how we can't afford to pay them.

Back to Toly.

The PICC was in and the surgery done but Toly kept having severe pain and high fevers. There was one awful night where Dr. Vlasses wanted to see how high the fevers would go and so removed all the NSAIDs from his IV. It was the worst night. The pain was amplified by the fever and Toly was inconsolable, writhing in misery, and sweating through his bedclothes. I lost it a little with the nurses that night. It is so impossibly hard to watch your child in pain for that long.

They were able to culture Toly's blood during the fevers and found that it wasn't that his blood was infected again, so it must be something else. Between the fevers and continued pain they wanted to repeat the MRI. They scheduled it for the following day.

That night, Toly's surgical wound re-opened and volumes of pus came out. It grossed Toly out so badly. He woke and was immediately upset that his gown was wet, then upon seeing the fluid was retching and whining at me. After we got him cleaned up, he still insisted on holding a napkin to it and throwing the napkin away if even a drop of fluid got on it. Poor Toly.
Toly shows the Doctor his surgical drainage.
Gross as it was, the doctors were pleased. Drainage is always better than the alternative. Then, Toly was brought to MRI. There was anesthesia again and this time, I had prepared the staff so that Toly was given Versed ahead of time. The whole process was better from beginning to end.

The results were upsetting.

I couldn't capture a picture, but Dr. Vlasses is showing us the MRI results.

We knew we were in for at least a week and we had arranged everything as best we could to make that possible. Karl had taken some time off (more than he should have) and we had friends watching the kids in between. So when the MRI showed an infection that was not worse but also not any better and the doctors changed their tune to 4 weeks, I was in shock.

4 weeks in the hospital? How would we do it? Not possible. I would not leave Toly alone, but I also needed to be with my 4, 9 and 10 year old at home. Karl had to return to work to pay the bills. It was a sad day full of crying and not just because of logistics.

The doctors emphasized that this was very severe osteomyelitis. The infectious disease doc said, "Well, I have seen worse...once."Of course IV therapy would be needed for 4-6 weeks, no question. I just didn't– and don't– understand why it was so bad. We got it diagnosed as soon as we could...Toly is so healthy. The fear and shaking of my own sense of well-being was too much that day.

Back to insurance. The problem was this: while they would let us languish in the hospital at $3-6,000/day uninsured, they refused to send us home without *pre-paid* home health care. We didn't qualify for Medicaid and they also said Medicaid wouldn't cover pediatric home infusion anyway. We just had to get home, though. And through all of this, our prayers were answered.

Some dear friends got the ball rolling. They offered to help pay. We only needed one week paid up-front to be discharged, but of course would have to pay for future weeks as well. This was a glimmer of hope in the darkness of that last weekend at the hospital.

More glimmers? Toly started eating and his fevers were gone (for good!)

First real food in almost 2 weeks!
I know this has been a long series. I think the next installment should bring us to the present.
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