Update on Addison: Take 2

Here’s a quick summary of what has been going on with Addison over the past week. I am going to attempt to hit the highlights and not get too detailed. She was extubated last Saturday (the 18th). It was a rough first few hours off the ventilator, but she worked through it. She was on vapotherm until late Wednesday night, and has been on room air since early Thursday morning. They had to treat her for withdrawal from morphine and versed; she is no longer on a narcotic, but is still receiving Ativan. It is being weaned and she will be off it soon. They have also been weaning her off the medication for pulmonary hypertension, as our insurance would not approve it and her echocardiogram was normal. She probably had some component of pulmonary hypertension exacerbated by her viral illness, but it is not a problem that they think she needs medication for at this point.

They have been questioning from the beginning of her stay whether or not she is silently aspirating her tube feeds. The doctors felt like when they restarted her tube feeds, her respiratory status worsened (they also weaned her vapotherm a lot that day, so who knows for sure). They were pushing for us to convert her g-tube to a j-tube (which bypasses the stomach and goes straight into the intestines and means continuous feeds). We were not convinced that aspiration was the problem, considering she has been doing great with her feeds at home and doesn’t regularly vomit or get pneumonia. I put my foot down and told them they had to prove to me that aspiration was truly a problem before I would consider the j-tube, as it would make our lives that much more challenging and I’m not willing if it is not necessary. We finally got them to consult GI. It basically came down to this: whether she is having delayed gastric emptying and reflux/aspiration all the time or whether it is simply due to her illness, we cannot be sure. So we decided to try a medication that helps her stomach empty faster. That was started Friday afternoon and Saturday morning she was started on slow continuous feeds. She did well for a while, but then she vomited early Sunday morning. The GI doctor suggested that we try to increase the dose of her medication and go slower with continuous feeds Sunday as she wouldn’t be able to get converted to a j-tube until today (Monday) anyways. He thought we might as well try it while we were waiting – if it helped great, if not fine. She only lasted a few hours before she vomited everything back up, so she will get a j-tube placed today. GI feels that it will be temporary, just until she fully recovers from her illness and then we will be able to trial and hopefully resume g-tube feeds. Right now, the j-tube is the safest thing for her. It will prevent aspiration and allow her to get the nutrition that she needs.

Pulmonary also finally saw her and they think she has asthma, so they have started her on an inhaler to prevent asthma attacks, and she will have a rescue inhaler and possibly steroids at home for when she does get sick. We are also looking into getting some home equipment to help us manage her at home when she’s ill and maybe keep her out of the hospital a little bit more. Violet and Oriana have been able to see and talk to Addison on video calls, which has made them super happy. They still want her home of course. Hopefully we will be transferred out of the ICU today once she gets her j-tube since she will just need monitored for 24 hours to ensure she tolerates her feeds through it. It has been a very long two weeks for all of us, but there is a light at the end of the tunnel. Unless something (else) crazy happens, it is now only a matter of days until we can all be home together again. Once again, thank you for all the thoughts, prayers, and positive vibes. They make us feel so loved and we definitely needed that over the past couple of weeks.

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About cmathes10

Mommy to 4 little girls & 2 fur babies. Just trying to survive the crazy. Sometimes I laugh, sometimes I cry, sometimes I need to scream.
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