Oakley Versus IPEX: April 2013

We have been home a little over a week now; and it feels like we've been going nonstop. We put his pump on, he responded as expected, and they let us come home, since they weren't doing much at the hospital that we couldn't do at home. We came home on Saturday, and Trevor and I had decided we didn't want home nursing care during the weekend, because we wanted to have family time without strangers in our home. It went well, we were busy, but able to handle it. Oakley gets meds 11 times a day, plus has an anti-nausea med as needed. On top of that, we have to check his blood sugar every two hours minimum (more if his continuous glucose sensor says he's going high or low), so even though Oakley sleeps through the night, I can't.
We had daytime nursing available, and it didn't work out well for our needs. I am and have always been a head-strong person, and my independence made working with our assigned nurse quite difficult. She had hearing problems, and although she had a cochlear implant, was unable to hear when Oakley's machines and pumps were going off. I have had the anticipation of bonding with Oakley pending for quite sometime, and having a stranger in the room, looming over you, is not conducive to that. She also had some personal issues (hygiene-related) that made her a poor fit for us. So she is no longer with our family. We are working on getting nights covered, so that I can sleep through the night, and things seem to be working better now.
Oakley turns 1 year old this Friday!!! We are so excited to have him at home for this milestone! He's still not allowed to be around children or groups of people, so we'll be celebrating as a family unit, no party. We are excited for the day when he will be able to meet everyone who has been praying for him, giving us moral and financial support, but for now, we are just excited to be able to share that we are finally getting to spend family time together.
Oakley has a G-tube that he is getting continuous feeds through, and he gets a formula called Pediatric Compleat, which is built more on real foods. It has chicken, green beans, carrots, etc. It's great, because he's gaining weight, despite the fact that he's been vomiting quite a bit. It's awful though, because it smells like dog puke...as in, it smells like vomited dog food. He gets car sick, so I've become adept at disassembling his car seat to throw in the wash, and we are working on getting him something to ease his nausea. He's pulled his trach out a few times, but we've put it back in with no problems. All in all, I'm loving being home with him. he seems happy, even if it is because our tv is bigger than the one in the hospital room. We're getting OT once a week, PT once a week, and working on getting night time nursing solidified through the week.
Thank you all so much for your prayers, and your continued support as Oakley continues fighting for normalcy.
I now want to direct your prayers toward another little boy who has IPEX, named Sonny D'Ambrosio. Sonny had his transplant a few weeks after Oakley, but is struggling with allergies to meds, and infections. The terrible thing about being in and out of hospitals is that nasty viruses and bacteria are everywhere (crazy that sick people go to hospitals to get well...) and having an immune-suppressed kid doesn't eliminate that. Oakley picked up CMV and Rotavirus during his time in the hospital, and Sonny has gotten a blood infection, Epstein Barr (mono) and has started feeling pretty crummy lately. He and his family live on the East Coast, and could use any extra prayers you could spare.