Sunday, January 3, 2016

Moving Along

In the last few days Avelyn has really been making progress. She has been tolerating full feeds via her feeding tube into her stomach. Right now she is still on continuous feeds, in a couple days she'll move to bolus feeds. She'll need to tolerate bolus feeds before we can give her more by mouth than we currently are-which is just 10ml 3x a day. 
Despite all the progress there's still a lot to worry Sean and I. She is still tachypnic (breathing too fast) often, although she doesn't do so quite as frequently or quite a s fast as before. She has been retaining too much fluid the last day or two-which can through her into fluid overload. She's very sensitive to fluid overload because she can start over circulating her lungs (which will wear her out from effort) and not perfuse the rest of her body. It's a delicate balance to perfuse her other organs, including kidneys, enough to have her diurease excess fluid off but not get her saturaturions too high to cause over circulation. The doctors have been adjusting her Lasix everyday looking for the best dosage and frequency. In the mean time Sean and I are watching her fluid levels very closely. 
One more mishap and she has to go into the cardiac cath lab and it's still just too soon. If she went now they still wouldn't be able to do any interventions to help her because she's not far enough post-op, it would only be doagnostic. We want her to get the most out of each procedure she has to go through so the further we can push the cath date the better for now. 
Our little Avelyn moved out of ICU today, which has been a very stressful blessing. We're glad she doesn't need the more intensive specialized care anymore but the last time they tried to move her out of ICU was the day she crashed. So we have been quite apprehensive about the move. I know she is better than she was on the 26th and has really made improvements, but being without the constant observation and monitoring is concerning. I am sure many parents feel the same after an extended ICU stay. You can't help but get dependent upon monitors and specialized care for peace of mind-if you can call any moment of thought peaceful while your kiddo is in the ICU anyway. 
Long story short- Little Avie is making great strides and doing her best. She of course still has a long way to go but we are proud and so grateful for her improvements. Thank you all for the well wishes, positive thoughts and prayers. We appreciate each and everyone of you. 

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