Okay so we have since found out that the oxygen just helped to relieve her. Probably not going home with it. We now believe and are going to discuss tonight that the fluid around her heart wasn’t so much stressing her heart as it was her lungs and then her lungs were stressing her heart. So, that is why the oxygen helped her out a bit. She is able to breath much more deeply now. Yesterday before the surgery you could look at her chest and see it raised due to the fluid.

Her surgery to clear the fluid went well. They took her to OR and suctioned it out. When he went to close a little puss came out of her wound. He opened her completely back up and irrigated her with a liter of antibiotic wash and reclosed. He also grabbed a bunch of samples while he was in there to run cultures on. The fluid they removed was largely clear and she didn’t look septic. This morning during rounds some of the cultures were already growing at least 4 times. Other tested indicated that she was indeed septic to some degree. This afternoon I am sure we will find out more about how bad it was and what exactly was going on there. She wasn’t running a fever, but was cold and clammy still. She also looked mottled and wasn’t able to get blood pressures in her legs.

So she had to be reintubated for the surgery. She had a rather sleepful night and so did we. Amber woke up with the intubation machine chiming, but at least it wasn’t Sissy Ky. She slept on Dex and that was nice. They didn’t waste time with Morpheine this time around. Eghtesady thinks she could have a reverse reaction to it and it could make her more painful when combined with other things.

They were rounding on her and talking about extubating her this afternoon. They started to leave and her alarms went off. She must have heard extubation and coughed her own tube out. Self extubation with no hands. They started sucking, chest therapy (beating her chest with a gas mask), Albuterol treatments, and oxygen. Her tests came back bad and they were forced to re-intubate her again. We were kicked out for them to do it and went to IHOP for breakfast.

They just came and did an xray of her belly because it is rather large and they are wanting to start feeds, but if they did she would bust. Hopefully that lets us know what is going on there.

So, the good news is our heart rate is back down to 120 – 140 range where she hangs out when happy. The other night it was 160 at the lowest when she was on her side and I had patted her bottom for 3 hours straight. When she was fussing it crested 180 and one time I think peaked to 200 shortly.

Her last blood pressure was 93/60 and yesterday before OR it was 123/ 73. So that is much more acceptable number.

So, overall she looks better both numbers wise and physically. She is still retaining a little fluid and is puffy looking. She also has the large belly, but she looks comfortable and her body is functioning better.

We are so thankful we are here at Cincinnati Children’s. We are pretty convinced with the complications she has had that at UK we would probably be one step away from death. Everything here is just miles above the quality of care we have received previously at UK. Even when we were in the step down unit (normal hospital) it was still the same. The really bad night two nurses came in to relieve us and patted her while we caught a couple hours of sleep. That would not have happened at UK. The one nurse saw that Amber needed sleep and wasn’t going to ask so she just started patting and relieved Amber. That is what she needed and wanted, but just wouldn’t say yes. The nurses here are so great. Without them helping out we really would be crazy. After this experience any operation any of our kids ever need we will be travelling here for it.

A real estimate for us to get out of CICU is another couple days since she extubated herself. We should expect to not get out of this hospital any earlier than next Wednesday if not Friday. That is with no more complications.

Thanks for the help, prayers, and thoughts. And keep checking her for the latest and greatest!

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