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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, April 29, 2014

Weekend review

It was a fantastic weekend. Jeff and I went on a retreat that filled us both and gave us a chance to connect and bond. Not just with each other, but with some other sweet folks. While we were away the kids stayed with grandma and papa. They had plans to visit with Captain America, then see the movie. What a BUST! Captain America slept through his alarm and I sent my extremely sensitive children to a PG-13 movie.. It was scary and I heard about it. Face-palm.... Sunday the youth came over for a fireside. We love having them come over. We are pretty lucky to have such great kids in this area. Right after it was over, Jeff took Gator to the hospital for his IVIG treatment.. From what I heard... They had a hard time getting his IV started. Two pokes later and they got things started. He slept through a poke in the night to get his anti-Xa. Daddy got emails sent and Gator sent himself to bed early. This morning, after I got Ry off, the little girls and I went up to take over and take gator to clinic. We did a lot of tweaking with meds and will be watching his Sats. He dipped some last night. If that continues we will be getting him some oxygen to help. His liver #'s were a little wacky, we did a urine sample to rule out infection/virus. We added Aldactone upped his Lasix, lowered his Losartan, his Digoxin and Lovenox stayed the same. He had some Tylenol and Zofran tonight too to keep his body happy after IVIG... 

I ordered a blood pressure monitor and an additional pulse ox. We need to have these things on hand. 

Just to add some cuteness to this update... A little lips:)






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