Tiara update 1/27/14

Today hasn’t gone as well as expected. Before rounds last night Tiara spiked a fever and they said she couldn’t have Motrin because of her kidney issues and the blood thinners. This really upset me because Tylenol does nothing to help her fevers.

Then the docs decided she didn’t need her lasix drip any more, which gives her a continuous dose of medication to help her urinate. They changed it to every 6 hours at a much smaller dose which didn’t seem like a good idea to me. I reminded the doctor of her current creatine level and he said it was fine. Hmmmmmm. FYI, we know this doc from the past and really like him but it was his first night dealing with Tiara during this admission. I didn’t feel like he was grasping how tenuous her current state was. Well guess what? She hasn’t been peeing enough since they made that change and she is getting puffy again and her lungs aren’t oxygenating as well with the extra fluid in her body. Surprise, surprise.

This morning they agreed to increase the lasix dose but by this afternoon I got them to put her back on a drip but just at a lower dosage. Yay me.

A few minutes ago I got kinda panicked because the nurse told me they had decided to move her to a prone position to help oxygenate her lungs. Proning has been proven to help heal seriously injured lungs faster. One doctor here loves to read all the current research and talk about it at rounds. This morning he was all excited about an article that came out this month proving this theory. Apparently they have always known it helps with the breathing but it was just scientifically proven to show it also increases healing. Sounds good right? Except that means they would place my 220 pound baby who has a tube coming out of her mouth and 6 iv lines out her arms on her stomach? Sounds hard, right?

Well apparently it is. So in order to do it safely they give her a medication which paralyzes her muscles first.

I don’t like that idea at all! Paralyze my kid intentionally for an hour or so, no thanks.

Generally they do proning on babies or adults when they have a special proning bed, which we don’t have here. The fellow and the respiratory therapist where all excited to do it and then 3 Attending physicians came by and said no. Which was really weird because there is never 3 attending physicians rounding together in the afternoon. God intervening… They decided to increase the ventilator settings instead, so no paralyzingly drug right now.

Thank goodness!

On the home front, Trinity is sick and had to get a steroid shot today. This Human Metapneumovirus which is what Tiara has and the rest of us, really reacts in the lungs like as asthma attack. A steroid shot is really helpful in knocking it out of you quickly. Or you can do my approach, wellness formula vitamins and 32 ounces of juiced veggies a day. I actually have gotten better quicker than everyone else in my family.

That’s it for today! Thanks for all the prayers, love and immense support. It truly makes this so much easier.❤️

xoxo
tiffani