Hanging Out at the RMH

Sierra has been out of the hospital for 5 days.  It has been wonderful!! Even though we have to stay at the Ronald McDonald House, it is nice to have some freedom to go different places.  The doctors placed Sierra on an 1800 mg sodium restriction and 1800 mL fluid restriction.  The fluid is not a problem, I usually have to push her to drink that much.  The sodium is a different story.  I have never read so many food labels in all my life.  Foods that I thought were delicious, after looking at the food label, I realized why. I didn't think it would be that big of a deal, because we don't eat that much salt anyway.  However, for a teenager, being told she can't have pizza, tacos, cheese, chips and salsa or her favorite microwave popcorn, she was not happy.  She has stayed under the 1800mg and found some great low to no sodium snacks for in between meals, I am really proud of her. 

The milranone seems to be doing it's job.  Her kidney function is staying in the normal range.  Her weight they want around 42 kg, but it is being a little bit bull headed and staying above 43 kg. We give her an extra dose of diuretics when her weight is above 43 kg.  We have had to give her the extra dose the last 3 days.  We have clinic tomorrow.  I am always a little nervous for clinic, as we never know what to expect.  I wish more fluid would come off with this milranone, it makes me VERY cautiously optimistic.  This is a different heart failure than we have gone through before. In the past the milranone only worked for a short period of time, and Sierra and Lindsey were never able to be outpatient on the milranone, they were too sick.  My caution is that, as we have seen with all meds, they work for a little while and then they are not effective.  So, we will cherish the days that we have with her out of the hospital, because I know they will not last.  

Gage started swimming lessons today at the local pool.  It is good to get him involved in something we would "normally" do at home.  He loved his lessons and had a great time.  Looking forward to going back tomorrow.  I am really missing my other kids and hope we can all be together soon.  We are excited to have Megan coming on Saturday. She has definitely earned a vacation from all she has done at home.

Friday Gage, The Thomas's and I went for a bike ride to the children's library.  The kids did great! 

On Saturday we went to a community bazaar in Portola Valley.  It was very fun and warm. 

Sierra, Alex, Tristen and Gage sitting on the grass at the bazaar. 

Gage finally got a hair cut.  Thanks to this amazing volunteer who comes to the RMH and gives patients and families hair cuts. 

Sierra went to the movies last night with a friend, so Gage and I went to our own movie.  Lots of fun. 

Gage ready for swimming lessons.