September 23, 2011
Yesterday officially marked two weeks home with Wyatt. He has adjusted quite well. I’m amazed by how much he’s been thriving in such a short time. He’s picking up his head now (still a little wobbly at times with all his gear), he scoots around in his crib and reaches for toys until he accidently rolls onto his side, he loves tummy time and prefers to sleep that way now, and he doesn’t freak out anymore when his two year old brother comes running up to him and pretends to be a tiger by growling at him. As you may have heard in the video I posted last time, he is also an expert at pooping sideways out of his diaper as grandma can testify... The rest of us have adapted quite well also considering the mess of home health care. We have come to appreciate why it is even more important now to stand your ground and go straight to the top when things aren’t handled the way they need to be. Getting consistent nursing coverage of GOOD nurses is the biggest issue. There have definitely been a few nurses we could have done without and those few almost drove me to the point of saying good bye to nursing altogether. But then there are the few amazing ones who just have the right balance. The good ones are those that realize that we as the parents are the experts on our child and the management of this disorder, and nursing is only needed and wanted as a back-up. The ones that appreciate that Wyatt doesn’t need hourly assessments or a diaper scale, and when he’s sleeping, you leave him be. The ones that realize that even though we have three other kids running around, Wyatt doesn’t need to be sheltered from them. Wyatt will get used to them coming in and out just as they will learn to understand that when we are busy with Wyatt’s trach care or blue spells, the other kids just have to wait. Just like anyone else who already has kids and then adds a baby into the mix, everyone in the family has to learn to adjust. And I believe that just because of Wyatt’s diagnosis, it shouldn’t be any different. He’s not sick, he has a gene mutation. He shouldn’t be treated any different than any of our other kids. The only minor difference is the endless bottles of hand sanitizer, disinfecting wipes and paper towels spread around the house to minimize Wyatt’s risk of infection and illness. So far we found two good daytime nurses, one of which I hope will become our primary nurse starting in November. She has another patient with CCHS she’s taken care of for 5 years now. Nighttime right now we’re left without nurses since we fired the one that fell asleep. The nursing company is now scrambling to find nurses with appropriate trach and ventilator care experience who are willing to make the 1 hour drive. The actually had to post an ad for a night nurse to try to fulfill our needs. So for now I set up camp in Wyatt’s room at night. My husband usually stays up till midnight or a little later while I go to bed with the kids at 9pm to get some sleep in our comfortable bed. And then we switch. The biggest pro of continuous G-tube feedings at night is that Wyatt sleeps through the night from about 10pm till 6am. I don’t really like the idea of him taking the easy way out with G-tube feedings only right now but Early Steps is coming out next week to do an assessment and get us Occupational Therapy, Physical Therapy and/or Speech Therapy. Improving his sucking reflex is my biggest concern. He chews on his fingers well because he’s teething but the whole sucking thing is a foreign topic to him still. The feeding schedule we have him on doesn’t seem to work to catch him in a playful mood to try the bottle. We’ll see. We might have to change things around. I’m sure that would make the Case Manager of the nursing company very happy. After all, I have to let her know what every doctor said at each appointment, and any changes that are made by the doctor need an order faxed over to the nursing company because the nurses can only go by what the orders say. Even things as simple as Tylenol, which is only given on an as needed basis anyway, they need an order for. I know it’s a liability thing but who’s in charge here. Wyatt is our son and he’s not sick! It rubs me the wrong way on so many levels. She even told us that she’d prefer if we get a diaper scale. Yeah right, we’re done with the hospital protocols. That’s not happening. Wyatt was at 11lbs 12.5oz on Sept 12th and now he’s already up to 12lbs 8oz today and pooping several times a day. I think we have no plumbing or input/output issues to would warrant the need for a diaper scale! Come on. It’s frustrating to me that there are too many people involved when you have private home nursing. I’m already to the point of not answering my phone anymore 15 times a day. I want to be able to just make an appointment for Wyatt without having to let three other people know about it who then also need paperwork faxed to them. The supply department isn’t much better either. They send me the wrong syringes when they first delivered supplies but because I can’t reorder until October, they argued with me about switching them out. They were also supposed to give me a template of all the supplies with need with the order numbers and prices. I have yet to receive that template so I guess I’ll make my own. And we’re still waiting on our CO2 monitor even though it has been approved for purchase by our insurance weeks ago. But since the nursing company doesn’t carry them, they had to order one. As long as it’s been, it seems like they’re building one… Sorry, had to vent a little.
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