Saturday, June 5, 2010

Making Progress

C did very well yesterday. She stayed in sinus rhythm with no breakthrough tachycardia. Awesome. The meds are working. We saw the cardiologist and he did an echo yesterday morning and confirmed that her heart is still functioning very well with very good blood flow. He even showed us on the echo that exact spot where her recent surgery was done. Pretty cool to see. He was very happy (and relieved) to see that her heart looks as good as it does. Honestly, so we were. We were both afraid that the crazy arrhythmia and high heart rate damaged her heart in some way.

We are back to trying to feed C her normal stuff. The most amazing thing is that she actually WANTS the food. She gets all excited and grabs at not only the spoon but at her bottles as well. She is holding them on her own and actually drinking while awake. We are just in awe of how much better she is eating and her improved appetite. Of course she is still not eating enough so that is where the g tube will help. The doctors are currently working out the best plan for her and it sounds like we will be running 50% of her caloric intake overnight through the tube. Will give all of us a break and will allow C to actually enjoy eating since we will not have to constantly force her to eat.

Unfortunately C's fever returned last night (and so did my fear of her tachycardia/arrhythmia returning). Ugh. She spiked to 103.7 around 6:45pm right as our very favorite nurse was getting ready to leave. Twice now C has pulled out the drama around this time of night. Two nights ago it was breaking back into the arrhythmia and last night a return of the fever. So, today we are trying for no drama at all. I told her nurse that the third times the charm and that tonight when she leaves C will behave herself. The doctors did confirm today what I have been saying all along, C has a cold. Well, duh. Her nose has been so stuffy for days and she is congested. I was actually leaning towards sinus infection but the viral panel came back as positive for rhino virus, the common cold. At least now the doctors are happy to see there is a reason for the fever and they can treat it. C will remain on the super heavy duty antibiotics for one more day just to make certain that nothing bacterial, fungal or yeast grows on the cultures. The intensivist will be happy to take her off the antibiotics once he sees two negatives on the cultures.

Did see the cardiologist this morning and things still seem to be looking up. He agreed with the cardiologist yesterday and the thinking is that C's arrhythmia is called atrial flutter. The atrial flutter is a direct result of the surgery she had with the scarring to the atrium. He also said the same things as the cardiologist yesterday in that there is a good chance we can get rid of this arrhythmia for good in the next year or two either through C's atrium healing and behaving itself, or her getting bigger and the scar tissue lessening, or through an ablation, or even through doing an electrical type surgery at the same time as her Fontan. Apparently there are many options now that the doctors know what they are dealing with. With each day and more consensus among the doctors, because you know there are like 8 different doctors involved with this, I get a little more comfortable in knowing what we are dealing with. C is stable and tolerating the medications. The medications are keeping the arrhythmia in check. The doctors know what they are dealing with and how to manage it and hopefully treat it to get rid of it permanently. C can and more than likely will develop future arrhythmia problems as she gets older. We will be prepared for them the next time.

There is talk around this joint that we might be sprung mid week. This, of course, all depends on C behaving herself and doing what she needs to do. She has to transition to anti-arrhythmia oral meds and have no break through tachycardia. She has to kick this cold and get rid of the fever. She has got to stop being a drama mama.

So the news is turning up. All the prayers are working. God is listening.

I am going to just reiterate what Kevin said, if you have called or left us messages please do not be upset if we have not gotten back to you yet. The cell service in the hospital sucks and we just really have not had time. After watching C struggle so much the other night I can hardly take my eyes of the monitor. I know I am going to be a wreck once we get her home. Kevin was hoping I might finally allow her to go sleep in her own crib in her room but that is so not happening now, She will stay right next to my bed.

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