Well, it's been a while since we have updated our wonderful, loyal blog followers. Our days are very busy trying to make small steps to improve Emma's heart function.
We moved to the recovery floor last Thursday and were settled into the nice new side. The heart failure/function team continues to drive Emma's care at this point. They are spending a lot of time focusing on Emma's fluid balance, nutrition, and electrolyte status. All of these factors play a direct role in how her body is reacting to her depressed heart function, as well as, how hard her heart is having to work to meet her body's demands. We are literally walking a very fine line on what Emma does and does not tolerate. One day, her medications are perfect for her and the next day we are chasing our tails. It can be extremely frustrating, and yet we know that this is how it's going to be until her heart is functioning more efficiently and her body heals from all the recent surgeries.
One thing that has not escaped my precious daughter is her sassy attitude. We have been pushing her to get in her stander, do physical therapy, occupational therapy, and spend less time with her electronics. She is not a huge fan of these new rules, and she proves that by pushing Scott and I. The last two days, despite having her favorite things taken away from her, she waited until the last five minutes of her stander time to do her occupational therapy tasks that we've been trying to get her to do for an hour. It's good to see that fight in her; however, she has had her fair share of timeout times over the last couple of days lol. Being four and stuck in the hospital for months is not a good combination.
We haven't really heard the "home" word lately, and Scott and I are having to cope with that possibility. We are not sure how long it's going to take her heart to recoup, or if it's going to recoup enough to support her little body, but in the meantime, we pray and push forward.
We really appreciate all the continued support, prayers, and encouragement. It is not easy being separated as a family or being away from home, but we feel the love and support from miles away.
We have had several people ask about new team Emma shirts. Be watching the blog soon because my wonderful, fabulous, super-talented best friend has designed new T-shirts and they will be for sale soon.
God is good! All the time! God is good! We continue to praise him in this storm.