Sunday, December 28, 2014

More ups and downs

Sorry for the delay in updating our wonderful blog followers.  Life in Boston has had its ups and downs over the past couple of days. The day after we discovered some excess fluid on Emma's lungs, we upped her diuretics and took her back off of the oxygen.  We also "gently forced" our stubborn daughter to start eating.  Emma has never really tolerated formula feeds very well and this time was no exception.  Emma's stomach was so full of gas it literally looked like it could pop.  However, as we came down on the formula, and up on the puréed foods Emma's stomach came back down to her baseline.  Everyone was thrilled with her quick turn around and once again started discussing discharge after an xray and labs on Sunday. 

Yesterday started off as a fairly good day for Emma.  We worked her back to her normal water times through her tube, and once again got her to eat all of her meals.  However, Emma did not really want to eat her supper and kept trying to gag herself.  We managed to get supper finished, played, gave her a bath, and tucked her in for the night.  About an hour after bedtime, Emma woke up retching and gagging.  She never vomited, but did so much retching and gagging that her O2 levels dropped and had a hard time coming up.  We are not sure exactly what happened....she could've aspirated a little while gagging so much...who knows.  Anyway, Scott and I have taken turns tonight keeping a close eye on her. Her oxygen levels have not been as high tonight as they were last night, but she has not needed oxygen so that is a positive thing. 

Having a heart "baby" is never cut and dry.  There are so many factors that play a role in her overall health.  Emma is constantly throwing us curveballs when we think we finally have the right regimen to send her home.  Emma will get an xray and labs done this morning.  We should then have a better idea of what the next few days hold. 

If you don't hear from us on the blog, please know that things are probably status quo.  Scott and I are taking turns sleeping, so most days are a little crazy.  For instance, yesterday, Scott slept at the hotel from 2-9pm, came back to the hospital and then I slept from midnight to 7am.  So, we are doing our best to keep Miss Priss entertained while squeezing in some much needed

Specific Prayer Requests:

1. That Emma will continue eating and not be so stressed.

2. That Emma's labs and xray will look good today.

3. That Emma will be able to have good O2 levels without oxygen.

God is Good!  All the Time! God is Good! 

Thank you for the continued prayers and support.  We also want to thank all of you who have sent cards, gifts, and most importantly prayers our way.  We are truly blessed by all of our loving friends and family.

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