Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Tuesday, September 2, 2014

Keep the bag packed..

We have had a fantastic 24 hours.. Sunday we got a new niece (not to be confused with the new nephew we got two weeks ago, hurray babies) Ryleigh gave a talk in church, so did Jeff and I, MayLee went to nursery for the first time alone, and Alex got discharged.. Hurray!!
 Monday we got a ton done. Backyard mowed, weeded, and a general tidy. Sheets changed, floor swept, and dusting done. Uncle Chais and Auntie Jess came for a visit. Gator drove the lawn mower. The girls wanted in on that action. 
Eden played stay off the alligator infested grass.. She made Jess and MayLee play too. She is kind of a lot bossy. 
Plus also, they played video games on Chaison's phone. 

 We shopped for the hot dog roast tomorrow and got a few things for our hamburger party with grandma and papa. 
The kids even had yummy frozen yogurt. May missed her nap so I stayed home to put her to sleep. We were tucking Gator in when he asked Jeff if he was sweating or crying.. There was a wet spot on Alex's bedding. We traced it back to Alex's PICC line. Oh no, the darn thing was leaking and not in a place we could fix it. After a call into Dylan (our home nurse) we made the trip up to PCH for some help. They placed an IV to make sure his Milrinone keeps going and have made a plan to fix it tomorrow. Not sure yet, what that will mean other than not fun. 

1 comment:

likeschocolate said...

Praying for Alex and praying God is giving you the strength and support to handle all of this!