trial run

Wow, what a difference a new nursing company can make. Since we switched Friday, we have had every shift covered and only one nurse called out due to a family emergency so far. Plus, this company actually sends nurses out to orientate with another nurse before they work their first shift with us and the nurses are on time. Staffing actually calls me with updates and asks for my input on how things went with new nurses. They also let me rearrange the hours to fit my needs, meaning if the usual 11p-7a night shift for example doesn’t work for us, we can move the time around if needed. It’s amazing. It’ll still take a little while to narrow down which nurses work best for us and get into a more set schedule but we already found a few nurses that look promising. So far we’re approved for 10hours a day by Medicaid but the agency is trying to fight for 16hours a day by doing a peer to peer which entails our Pulmonologist talking and negotiating with the Medicaid doctor. Quite frankly, I’m fine with 10hours a day because I’m used to our own routine by now and it’s difficult for me to have nurses around again. But we’ll see. To be perfectly honest though (and this is where I need to let off some steam a little), home nursing can be help and a curse at the same time. I know down the road I’ll probably be happy to have the help, especially when Wyatt is toddler age, but for now I’m not so sure. Sometimes nurses get in the way more than they are help. I am overly organized with Wyatt’s supplies and have daily needed items as well as emergency items everywhere throughout the downstairs area of the house. Well, the nurses per policy have to have an emergency to go bag. A new nurse was orientating yesterday and I had to bite my tongue. Nice lady, seems to be good with babies but the to go bag was an issue. See, I have a large zip lock bag hanging on the ventilator stand with extra daily supplies plus the Ambu bag, another bucket that goes with me everywhere I go in the house with daily supplies for care and emergency trachs, then the suction bag which has to go anywhere Wyatt goes also has daily supplies and emergency trachs in it, plus I have two other 7 day supply bags in Wyatt’s closet in his room with absolutely everything, not to mention the extra Ambu bag and O2 tanks in his room. So I am well prepared to head out the door at any time with everything I need. That nurse however wanted another separate bag that has all the (same) supplies that are listed on their emergency procedure paper. What made me mad and I had to bite my tongue was that she went into my 7 day supply bag and took things out to meet her paperwork needs. Now I have to reorganize things today and double check my bags again to make sure everything is where I need it and in appropriate quantities. That kind of stuff is just not going to fly. How many emergency bags can you possibly need? I got it covered! I don’t need someone retracing every step I take or changing things around on me. There is a reason why I set things up the way I have. I mean come on, look at the picture of Wyatt’s room.



right after building his room... all those shelfs and drawers are full with supplies now

Is there really any question that things are visible and readily available? That being said, last night’s nurse didn’t work out well either. Hovering is for helicopters, it does not have a place in this house. Despite me telling her that Wyatt needs a dark and quite room to sleep and that we do not do any hands on assessments when he’s sleeping except for hooking up his feed and a diaper change at 12am and 4am, she ignored that and woke him up several times to check his temperature, listen with her cure all stethoscope and to just routinely suction him when he didn’t even need it. What’s with everyone using the stethoscope all the time anyway? It’s audible and Wyatt will make it known when he needs to be suctioned. Anyway, when I held Wyatt to try to get him to go back to sleep, she kept asking every 15 minutes if I wanted her to hold him. Every time she came over to ask, he was almost asleep in my arms and then she woke him back up by talking and bugging me. She did that three times and this was at 1am. Needless to say, being tired and aggravated at that point myself, I finally snapped and raised my voice a little so she’d get the point that I meant it when I said that I didn’t need her help and Wyatt just needs to be left alone. I know they all mean well but when they don’t take my requests serious and insist on doing things their way, I just don’t have patience for that. Those types of nurses are simply not a good fit for us. I need the skilled but laid back kind of nurses who understand that Wyatt needs to be allowed to be treated like a normal baby and that takes priority over filling in every space on their nursing paperwork... Ok, I think I’m done with venting for today...

Overall, Wyatt is doing very well. He’s 15lbs 3oz by now and at that stage where he doesn’t want to miss out on anything throughout the day. He started this new thing where he’ll squint his eyes when he’s smiling now. I swear it’s his first attempts at flirting or trying to wrap us around his tiny finger to get what he wants. He’s so darn cute when he does it, too. And when you pair him with our two year old, man, they’re going to cause so much trouble sooner or later. He’s also scooting all over the place now and rolling back and forth. Sitting up on his own is still not possible because his head still gets wobbly from time to time but he’ll get there. He’s only 5 months old now, has a vent circuit attached to his neck and has a 98 day hospitalization delay start. I give him some slack for now. His front bottom teeth are starting to come up too so he’s chewing on absolutely everything all day long. It makes him a little cranky sometimes but it’s also kind of nice though because it makes it a lot easier to do his oral motor exercises. He’s basically volunteering for them. A couple weeks ago he didn’t cooperate doing his tongue exercises with his oral swab but I was eating pretzels at the time and he kept gazing at them. So I handed him one and what do you know, he likes it. So pretzels are our new oral motor tool. He’s progressing well with Occupational Therapy and I’m hopeful that once he’s old enough to eat actual baby food, he’ll get the hang of it soon. Until then though, we’re stuck with the G-Tube and we have to bring him in soon to get him switched to the button because his skin keeps getting irritate from the G-tube bridge. Next Monday, he has an abdominal ultrasound scheduled too to check for tumors of neurocrest origin. There is another case of a 20/33 CCHS boy who actually was diagnosed with Neuroblastoma and is undergoing extensive chemotherapy now. I think of him and his family a lot. All the CCHS associated risk factors are scary and will require yearly nerve-wrecking check-ups and tests. Finger’s crossed though, so far we’re in the clear. I have been sprinting Wyatt once or twice a day for the last week or so as well (letting him breathe on his own off the ventilator). The Pulmonologist is a little hesitant and hasn’t given the official order yet but Wyatt seems ready for it so I gave it a shot.  And he’s doing awesome with it. Right now, he can handle it anywhere between 15-30minutes before he gets tired. We have to let him start working that diaphragm and gradually increase the time frame. It’ll take time but we can’t wait for Doctor’s orders.  With a rare disorder like CCHS I’ve noticed that Doctors are often weary and unsure on what to do and try and when.  And that’s understandable when even the Pulmonologist only sees Wyatt once a month for 10minutes and can only go by numbers on a chart. I on the other hand can go by Wyatt’s cues, carefully chart everything we do with him, and then come back around and show the Pulmonologist what we’ve done and how it’s worked. It’s kind of backwards thinking but apparently, that’s the life of CCHS.

happily sprinting... it's so nice to hold him without the vent circuit getting in the way