Hi everyone! Sorry I have not sent an update sooner. In my heart I was waiting for Ricky to turn the corner and start doing better, and he finally did. Thursday, I think it was, Ricky finally got off of oxygen. Rather than weaning him off of it, which they couldn’t do because he refused to the nasal canula and was instead on a mask, he went cold turkey at bedtime and never looked back. At first he was still a little dizzy when he stood up and/or tried to walk around, so I was pushing him around in a wheelchair, but gradually he started moving more and now we have taken walks around the floor, gone to the playroom, and also gone downstairs to the cafeteria to get snacks with his cafeteria pass. I am so proud of him! He does complain about his legs aching when he walks, but that will get better. A physical therapist and an occupational therapist have been helping him exercise too, so he won’t be so sore.



He was also on isolation pending his sputum culture results, but luckily they turned out just fine. He’s culturing normal staph aureus (non-resistant) so he is free to go outside of his room and people don’t have to wear masks/gloves/gowns when they are in the room. After he blew two peripheral IVs (through no fault of his own… One of them a nurse accidentally pulled out when she was changing the tape, and anther one infiltrated on its own), on Tuesday it was decided that he’d get a PICC line, which is a vein catheter that is more invasive and goes almost to the heart. The nurse got it to midline (somewhere between peripheral and PICC area) and then it was stopped because of scar tissue from past placements (this happened the last two hospitalizations as well). So he was taken to fluoroscopy where they managed to sneak it up to PICC area. Yay! Meanwhile, though, the resident and attending doctors decided with the medical team that it would be best for Ricky to get a port-a-cath put in. Basically it’s a more permanent line that goes directly into the major vein near the heart, by way of the upper chest. It rests under the skin and is accessed through a silicone skin after piercing the person’s skin. A person can continue to swim and bathe as usual when they have a port, and it lasts for years. It’s a sort of a surgical procedure to put it in, sometimes done under conscious sedation and local anesthesia, but with kids they like to put them to sleep for it.

After the child life person came to explain the procedure to him, Ricky was okay with it and not as anxious as he first was. Whew! Right now he is just anxious about the general anesthesia. I will admit that Dave and I are too, since he has a history of being combative after waking up from anesthesia. The port surgery will most likely occur Wednesday or Thursday. I hope they tell us soon, because I’ll need to make arrangements to change my work schedule if it’s on Thursday.

Okay… That is it for now… I’m going to take Ricky and Misty to the hospital playroom for a while! :) Looks like around another week for Ricky in the hospital. I’ll send another update as soon as there is more news! :)