Friday Linus still wasn't acting like himself. He was super needy and sleeping nonstop as long as he was being held. He was barely taking an ounce by mouth at each feeding. I wasn't positive, but I was pretty sure his retractions were worse. Saturday morning his breathing was definitely worse and he seemed a little pale. While I was at work, Trina emailed our cardiologist who is awesome about replying no matter what time of day. He even wrote us when he was on his holiday vacation. When she explained his symptoms (breathing hard, pale, not eating well, coughing occasionally) he said he would be on shift the next morning, but that Linus was too little and too fragile to wait and that we should take him in. We decided that we'd take him to the ER after I got off work. When I got home. Linus actually looked a little better. We waffled on whether we should take him in or if he could wait til his cardiology appointment on Tues. We decided to wait and that if he seemed worse again, we'd take him then.
A few hours later it was bath time for the boys. I bathed Dexter and he didn't hate it, pretty good for him. Then I bathed Linus and noticed he looked mottled. Then I noticed his fingernail beds were a bit blue. And his toes... Dang, change of plans, again. He needed to be seen now. I finished up his bath while Trina started getting things together for the two of them. Poor Simon, who loves the bath the most, had his cut short so we could get Linus ready for an outing that would most likely end with being admitted to the hospital.
At 5am, I was woken up by Trina coming into our bedroom. I was shocked to see her. I just KNEW they'd keep Linus. I asked how the visit went and she told me she didn't want to talk about it because she was mad and exhausted. Uh, ok. I dropped it, because I know what's good for me. Later she told me how furious she was and what a complete waste of time the whole trip had been. When she got there she had to wait forever, then they took an xray and a sputum sample. After waiting a ridiculously long time, she asked what the hold up was. The nurse told her that his oxygen sats looked good, his lungs were lungs were clear and that his heart didn't look any more enlarged than in his last xray so as long as the RSV test came back negative, they'd send them on their way. Huh??? What about an echo to evaluate his heart function or a CBC to determine if he needs another blood transfusion or a blood gas to tell us how hard his body is working to stay satted? Nope. They just wanted to see if he had a cold and to send him on his way. Trina was beyond mad at this point. When the cardiologist on duty came to talk to her he was dismissive of her concerns. He did not care that Linus had all the symptoms of unregulated heart failure nor that he was maxed out on his meds. He could've cared less that we were told at discharge less than 2 weeks ago that if Linus had ANY new or worsening symptoms to bring him back immediately. When Trina told him Linus was breathing to hard to eat by mouth without choking, his response was to stop feeding him orally, to put it all down the tube. Nice. Obviously these people were going to be no help at all, so she left. 6 hours worth of wasted time and energy.
Sunday and Monday he did ok. Not great, but not in crisis. We would offer him a small amount of food by mouth at each feed. Sometimes he'd get a a quarter or half ounce down, sometimes nothing. The rest went through his NG tube. He slept most of the time, breathed a little easier and we didn't see any more color changes. Tues he went to see his cardiologist who was less than happy to hear about his ER visit. When Trina told him about the doctor's advice on not feeding him orally if he couldn't handle it, he said "That's not exactly a solution now is it?" Ya think?
Unfortunately Dr.HD is not happy with Linus's continued downward slide. He doesn't think doing another balloon catheter would buy us enough time to make it worth it. The first one only lasted 3 weeks and the second one lasted about 8 weeks. These are not the long term results one hopes for with this procedure. He's going to talk to the surgeons about the possibility of repairing his aortic and mitral valves instead of replacing them. They might even be able to only replace the aortic and hopefully repair the mitral. Worst case would be replacing them both. Replacing a mitral valve on a baby under 6 months is very dangerous. They'd have to use a mechanical valve and he'd be on blood thinners for life. Not to mention that he would outgrow anything they transplanted at this point. This would require more surgeries and more transplants down the road. It's a nasty roller coaster you can't get off.
We go back on Friday to have the surgical consult and to have an echo. Linus should have had one on Tues, but someone overlooked the fact that he wasn't on the schedule. My poor kid falls through all sorts of cracks. Until then we're just keeping him as calm and comfortable as possible.