This week was the longest and most intense we have had in quite a while. We were at the hospital for appointments or treatments everyday this week. The scheduling of appointments is starting to get wild again. Last minute additions, surgeries, trying to get the therapies scheduled all adds up to a very filled calendar. Thank God we are organized with this. Elias weekday nurse is about to lose her mind over the changes and number of appointments. She doesn’t know how we keep up with it all. Elias seems to be doing just fine now post UTI. now the question will be when will the next one hit us. There is not much we can do except hope that the prophylaxis antibiotics we are giving him cover whatever UTI bacteria decides to spawn itself through the fistula. There was talk of giving Elias probiotics, but after much discussion it has been decided that right now introducing bacteria, no matter how good it is, it is still bacteria. With the GI issues Elias has with the fistulas and other oddities as well as the central line, which is the gold plated lifeline we would be devastated to lose, the risk of cross-contamination is just too big a risk to outweigh the benefit. It may be something we revisit down the road. We also had a few appointments, mostly follow-ups from the hospitalizations. Nothing of real interest to report from any of them. They were uneventful and in Elias’ world that is a wonderful thing.
The nursing scenario is slightly improved, but might not stay that way too much longer unfortunately. They did find us a Monday-Friday night nurse, so that just leaves us the weekends without nursing. Unfortunately for us Katharine works a lot of weekends so it is still a burden not to have it, especially overnight. That is the most difficult time. The nursing agency told us last week they had someone hired, but she was unable to attend the ventilator class required so she in not eligible for our case. The bad news is the next ventilator class for their new nurses is not for another month, so we will have to wait that ling unless a nurse loses a case that is already working for them. I was particularly upset when they called our day nurse to ask her to cover at another house over the weekend because she would be off on Christmas. Why not have her come cover our Saturday that they can’t fill instead. How dare they! I see where their priorities are. Our night nurse is a ding bat. That is about as nice as I can put it. While the agency touted his 15 years of experience it is obvious that the time off he took has diminished his nursing skills, not to mention that he is demonstrating on a nightly basis he knows nothing about the ventilator or how to respond properly when it alarms. He simply gets up silences the alarm and sits back down. That is damn scary. Fortunately most of the issue alarms that require intervention with Elias have come just prior to his shift ending so we have been up and are responding. The fact that he can not explain why an alarm is going off is a clear indicator he shouldn’t be working this case. Last night he left the heater to the vent off all night, Katharine noticed it when she went in the room. So Elias slept restlessly and was not having his trach humidified properly, so he was having difficulties. So now we have to decide if we should get rid of him because of his lack of knowledge and be without nursing at night again indefinitely. We have thought about teaching him, but first off I should NOT be teaching him and second we have tried to show and explain as we respond, but the next time it happens he does the same thing. So even if we choose that path it might be frustrating. It just isn’t safe for Elias to have someone that can not respond to his needs, especially when it comes to his breathing. Then there is the fact that he constantly reminds us every shift that daytime would be better for him. I finally asked him what I was suppose to do about that, there was no response. On Thursday night, the worst night possible mind you, he called off his shift. We had been at the hospital all day, got home late and Katharine went to work and was there until almost 1 am! When he came to work the next night he gave us a completely different story on why he had to call off than he told the agency or at least what the agency reported to us, but what benefit would it be for the agency to lie on his behalf. The agency said his mother was in the emergency room and he was with her. Perfectly acceptable reason for us, he told us he was sick and didn’t want to bring it to Elias. Again a perfectly acceptable reason. The problem, SOMEONE lied to me and now there is distrust and concern. I do not want to accuse either side of falsifying a story, but there is a definite difference in story. So we are trying to figure out what we should do. More than likely we will be dismissing him and having a strong discussion with the nursing agency. That as we said before though will probably put us back where we started without night nursing. As they say that is the way the cookie crumbles. We will continue to overcome all these obstacles just as Elias overcomes his.
Sorry there wasn’t a lot of fun stuff to report. Elias had limited time for fun and development this week. Poor thing was so tired everyday. We even put him in his jumperoo one evening and he enjoyed it, but did not go crazy jumping around like he normally does. I’m sure some of that was contributed to not feeling well from the infection. We are hoping that this week is a little more on the normal side. We do have a GI appointment this week, but for now that is all. We are hoping to keep it that way. We hope everyone has a great weekend.