Homeward Bound

Well, we finally brought Evie home late last night. In the space of 24 hours, her condition turned around completely, and when the nurse came in to check on her yesterday morning she said, "Wow! She sounds like an entirely different baby!" Evie was down to only 0.2 liters of oxygen per minute during the night and on just room oxygen during the day, and her difficult retractions were nonexistent! Later that morning, when the doctor came in to check her, he told me that her breathing was still a little wheezy but since she was breathing easily he wasn't concerned. He said that if she could have a nap on only room oxygen without her pulse oxygen levels dropping below 90%, she would be able to go home that day. Of course, he also said that it was normal for sleeping babies to drop to 88-87% and come immediately back up because they just needed to roll over or cough or something, so that was okay as long as she stayed at about 90%. In days before, her levels had dropped to 85% and stayed there on room oxygen, but he felt that since she was so improved she would probably be able to finish healing at home. He told me that hospitals never send sick babies home cured, but they send them home once they're improved enough to continue getting better on their own, and Evie was at that point. In fact, he even had all of the paperwork ready to go, so as soon as she passed that final requirement, the doctor on call would be able to immediately sign off and get us out of the hospital as soon as possible.
During her midday nap, her levels dropped during the first half, but stayed up during the second half. I was hopeful that it might be enough, so I called the doctor back in to see if he would let us leave. He said that since her levels had dropped at first, he wasn't comfortable enough to send her home right then, but if she was fine during her entire next nap, he would make sure all of the paperwork was ready. I was a little disappointed, but also hopeful that Evie would be able to keep her levels up on just room oxygen. When Todd came in after work, we talked and played with Evie, just killing time until it was time for her to sleep again. Just before bedtime, we realized that we didn't have any more of the diapers we'd brought, and I wasn't about to open the ones the hospital provided because I didn't want to spend any more money there than I absolutely had to, so I sent Todd to Wal-Mart. Meanwhile, Evie and I played some more, trying to tire her out. Forty-five minutes later, Todd finally came back with some diapers and we changed her, gave her a bottle, put her in her jams, turned down all of the lights, and left to get some hot cocoa. A few minutes later, we tiptoed back in to see if she'd taken our hint and she was asleep, so we tiptoed back out and walked down the hall to the nurses' station to tell the nurse that Evie was finally asleep and ready to start her oxygen-free "nap." She told us that the doctor had left notes saying that Evie had to sleep for over 30 continuous minutes without her levels dropping dramatically like they had in the past.
I was on pins and needles the entire time. Evie had finally fallen asleep after 9:00 pm, and we wanted to be out of the hospital by midnight so we wouldn't get charged for another day. I was afraid to start packing anything for fear I would jinx it, but I was also pretty hopeful that we would be able to go home. Todd was working on his "Footprints" stitchery, which reads "He spoke, 'My precious child, I love you and would never leave you. When you saw only one set of footprints, that was when I carried you.'" While I reread that inscription, I was reminded of Evie's priesthood blessing earlier that week, and that Heavenly Father knows who I am and who Evie is and he loves us. I had a warm feeling, and knew that everything was going to be okay. Finally, Evie had been asleep for 45 minutes, and Todd went out to get the nurse. She said that Evie's levels had dropped just a little bit but gone right back up. She listened to her breathing and told us she was going to go call the doctor and see if we were able to be discharged. I had a great feeling, because Evie had passed all of the tests that had been put to her, and we still had an hour left before midnight. After 4 days of being stuck in the hospital with my baby, I was a little stir-crazy, so when the nurse came back in, I was almost vibrating with anticipation. Then she said that the on-call doctor didn't want to send Evie home, and that anticipation exploded into pure rage. Apparently, the new doctor would "feel more comfortable," if Evie could sleep for 4 hours without oxygen and wanted us to stay until the next morning just to make sure that she was all better. I was really proud of myself for not shouting or anything like that, but I did say, "I'm so furious right now. We were told by the previous doctor that Evie only had to sleep for longer than 30 minutes without the oxygen and we could go, and she's been asleep for more than an hour now, and is fine. Evie has passed every test she's been given with flying colors, but now it feels like the rules are being changed on us, and I don't appreciate it. We don't have insurance for 3 more weeks, and we really can't afford the days we've already spent here, but I don't want to pay for another full day just so that the doctor can come to the same conclusion that we already have: that my daughter is better. I might feel differently if this doctor had actually come in to check on Evie for herself, but I'm having a hard time accepting the fact that a doctor who has never even met my child is suddenly making these decisions for her over the phone. Is there any way for us to legally take our daughter home?" She said that yes, we could take Evie home against medical advice. I turned to Todd and said, "Fine. I think that's what we need to do. Evie is infinitely better than she was even yesterday. You know my feelings on this matter and the decision is up to you, but I have work tomorrow morning, so I'm going home either way." We asked the nurse to leave so we could discuss our situation in private, and it turns out that Todd felt exactly the same way I did. We'd even both individually had the same thought (though we didn't vocalize it to the nurse) that we'd be more than happy to stay for an extra day if this self-important doctor wanted to pay our bills for that extra day. Everyone kept telling us that they understood our predicament, and I just wanted to scream that no they didn't! They had no idea what it was like to have a baby get very sick just a couple of weeks before insurance benefits kick in. And, of course, even though Todd only started his new job in December, he's on salary now and so we don't qualify for any Medicaid etc. benefits, even though this year he'll make more than the previous 4 years combined. So we're stuck squarely in the middle between a rock and a hard place, probably going to have to pay all of those medical bills ourselves, and staying another day really would make a difference. Those nurses and doctors with their pay grades and hospital benefits have no idea what we're going through, and it really grated on me to have them tell me "we understand that you're poor and can't afford this, but stay another day anyway, just for our peace of mind." Todd felt exactly the same way, so he had the nurse bring a discharge form. Meanwhile, since I'd kept the room organized and clean, I was packed and ready to go in 15 minutes flat. I didn't really feel bad taking Evie home "against medical advice" because I felt that we weren't; the day doctor had already given us the go-ahead, and I felt that his "medical advice" was more valid than the night doctor's because he'd actually met my daughter, checked on her, and familiarized himself with her case. On the way out of the hospital, I took some final photos to commemorate this experience:

 This is the name of the actual hospital we stayed at.

 This was Evie's room number.

This cute picture of a giraffe was hanging on the wall across the hallway from Evie's room. 

On the drive home, I was still shaking from anger and anxiety. Suddenly I was worried about whether or not we'd really made the right decision to bring Evie home. What if she suddenly took a turn for the worst? What if we got home, fell asleep for just an hour or two, and then had to turn around and come back to the hospital? At exactly midnight, a pure white dog ran onto the road directly in front of us. Todd swerved to miss it, but we hit it dead on. I felt the jolt and heard it yelp, and I screamed and started sobbing; I'd never hit an animal with a car before, and I was trying very hard not to take it as a bad omen. I was trying not to draw parallels between that pure, white, innocent animal and my pure, sweet, innocent baby sitting in the back seat. After all, if we'd stayed at the hospital, that dog would still be alive; what if our pride as parents ended up killing them both? I tried to regain that sense of calm assurance I'd felt while looking at Todd's stitchery, but I was simply too worked up. Four days of feeling trapped in the hospital, helpless to do anything for my baby girl, and very little sleep, followed by intense rage and then severe shock all combined against me, and I just cried. We decided to let Evie sleep in our bed last night so we could keep tabs on her all night and know if something went wrong. It wasn't the best night's sleep I've ever had--she cried a couple of times in her sleep and I was fearing the worst the whole time--so I felt like I was running on fumes all day at work today, but my precious little girl seems happy and healthy. She got to see her Uncle Steve (Todd's oldest brother who lives in Texas and came up just for the day to move his in-laws down to live with him) and flirted with him a little bit this morning while I had breakfast. She still coughs a little bit sometimes, but those rare coughs seem to be productively getting the rest of crap out of her lungs, and she seems even brighter and more cheerful than she was before she got sick, so I feel that we made the right choice to bring her home!