Monday, July 22, 2013


Overall it was a much better day. Dr. Spray decided that he did not want Jake to have a PICC line. He wanted his IV meds transferred over to all oral meds. He didn't want him to be under anesthesia again or risk infection in another central line. They decided it was worth a shot to try and get a IV by ultrasound guidence so we went down to Interventional Radiology to try. After 2 IVs blew and a whole lot of meds to calm Jake down they were able to get one!

We came back up and spent the day sleeping off the drug haze. Jake didn't retch nearly as bad as he did yesterday. He was able to keep down apple juice for me. He still would retch but didn't vomit any. They gave him Zofran to help with his nausea. He pooped on his own, a lot! I know TMI but if you are a heart mom you will get how important that is for all of the belly issues he has been having.


He still has the RA line in (Line that goes directly into his heart). We hope to have that out in the morning. They have been transitioning his medications so he shouldn't have any IV meds after tonight.  He had some pediasure tonight and even ate a few cheese puffs for daddy. Not the most nutritious of foods but hey he ate! Baby Steps.

Aidan had a fun day as well. Child Life came in and told us that this week at CHOP they are having Camp Get-A-Well-A. She gave the boys t-shirts and a schedule of crafts and activities they are having around the hospital for siblings and patients. Aidan made wooden medallions today for he and Jake. It was just what he needed to help break up the day.

We also decorated Jacob's door and windows with Window Markers. I drew his favorite train "The Little Engine" on his door with his name. The nurses loved it.

Please keep the prayers coming. He is still draining a lot of fluid. More then they would like. It could keep us here for weeks to a month. Praying that once we get the line out we can get him out of bed and help that fluid get out of his body. We are making progress!

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