Nursing Care Drama

So I haven't said much about the situation with Caden's nursing care. I guess that's because sometimes I feel a little weird about having a nurse in the first place. It's supposed to take some of the stress out of my life. However, it's actually been adding a whole different kind of stress into the house.

When a child qualifies for nursing care, the agency typically says they can't get a nurse for less than 40 hours/week because the nurses want to work full time. I can understand that perspective, but yet I really didn't think I needed a nurse for that much time! After all, I don't have a very big house and sometimes I like to have my own space to relax in without someone else around. But apparently we didn't have a choice.

So, in the middle of February, we had our nurse #1 start. We liked her pretty well. She was very soft-spoken, considerate of the fact that this is our home, LOVES children and you could see that in how she interacted with Caden and overall a nice person. However she has a lot going on in her personal life so she sometimes gets a little distracted and can forget little things. And, for those of you who know me, you know I am very particular and like things done in a specific way. So when I go to look for something after she left, I would never know where to find it. For many things it's not that big a deal. However, when it is your child's g-tube extension and you can't really feed them without it, it becomes a bit more of a problem. At any rate, things were still moving along okay. One of the things I really appreciated about her is that she is a Christian and was constantly singing bible songs to Caden. I love that!

Well, this nurse also happens to be in the military reserves which means she has training obligations and other things she is required to participate in. She had a two-week training scheduled beginning on April 19 and ending April 30. That was fine. We were told by the nursing agency they would be able to get us a temporary replacement during her absence. However, a whole week went by with no one being able to come out. Every day I was told “we don't have anyone today, but tomorrow we have the perfect person coming in to do orientation and we'll give you a call.” I wouldn't hear anything the next day so I would call them back and would hear, “well, they didn't have pediatric experience” or “they haven't worked with babies before.” So obviously I don't want them taking care of Caden if that is the case.

So I was on my own for that week and that was okay. However, the problem came in when I talked to the nursing agency on Thursday and they told me that the nursing supervisor had to come out to do a “re-certification” in order to justify Caden having nursing care and that had to be done by that day otherwise we would have our case discharged. I told them I didn't really feel that was fair to me because it wasn't my fault we didn't have a nurse. They told me I had two choices. We could either be discharged or we could be put on a “hold” status. I said I didn't really like either option but if those were the only two I had, I was choosing the hold status. The idea was that when our nurse came back from her two weeks of military training that she would come back and the case would resume as it was before. I said that was fine.

Then I got a call the following Monday, April 25 and was told that they had a nurse who could come out that day to do an orientation and could work that week. I said, great, send her out. So she came out that afternoon with the nursing supervisor. The supervisor told me they had to re-open my case since we had been discharged the previous week. I wasn't very happy when I heard that since I was very clear when I told them I did NOT want to be discharged. Anyway...

Enter nurse #2 into the picture. First off she seems “ok”. Not great, but ok. I notice that she doesn't seem to be listening to what I tell her because she will ask me a question I literally just answered. For example I will say that Caden takes a nap at noon. Then five minutes later she asks me if and when Caden takes a nap. Things like that made me wonder if she was just overwhelmed with information and she was having trouble remembering it all or if she truly just wasn't listening to what I was saying. I decided to give her the benefit of the doubt to start off.

Things started getting really ugly when she attended a few of Caden's therapy sessions though. The first session she came to was PT. Now, keep in mind that Caden's PT is phenomenal and we LOVE LOVE LOVE her! She is extremely knowledgeable and VERY good at what she does. She is also good at educating and explaining to people why she is doing certain things with Caden. She did a great job telling nurse #2 why we were trying to keep Caden on all fours as long as possible and keeping him out of standing position. (That's a whole other story and if you want me to say more about it, I can in another post.) She also had nurse #2 practice several exercises with Caden on the large exercise ball so that she would be able to do these at home. It became clear very quickly that nurse #2 was not “getting” it! In fact at one point she completely let go of Caden while he was on the ball. Now I'm pretty sure that anyone with common sense wouldn't think that was a good idea. Hello??? An almost 16-month old baby on top of a large round ball without support??? Call me crazy but that just seems like a no-brainer! So things weren't going great.

The next day she came with us to Caden's OT session. Caden's OT is also VERY good at what she does and we love her as well! She works at the same place as the PT. :) Caden has some sensory issues that she wanted to address with a brushing/joint compression technique that shows good results when done properly. Our OT says that if this is not done correctly, it is not only ineffective but can also be detrimental to children. So I was paying very close attention while she showed me what to do. She had me practice on her so she could make sure I was using the appropriate pressure and hand positions. She said I did very well; better than most people the first time. So I gave myself a little pat on the back. :)

The OT asked nurse #2 to practice on her. Nurse #2 responded by saying, “I already know how to do it.” Our OT replied that she did NOT want nurse #2 doing the technique on Caden without her approval of it first. So she half-heartedly went through the motions. I was thoroughly unimpressed! And, the other thing that about sent me through the roof during the session happened before this. As the OT was explaining the background about the brushing/joint compression, nurse #2 took Caden and stood him up and was holding on to him telling him, “Go on, take a step. Take a step to Mommy!” This is in COMPLETE opposition to what our PT had told her the day before!!! Our OT gave me a look of horror before firmly explaining to nurse #2 that we do NOT want him standing right now and went into all the reasons why. Oh how I love our therapists! They are looking out for Caden's best interest as our nurse clearly was not.

The icing on the cake was when Caden had his speech therapy testing right after OT that day. Normally I do not go in the room when the therapist works with Caden for speech because it's too distracting. But since she was doing testing in order to write up a report on his progress she needed me to be present to ask me questions. That meant that we all got to go in: me, Caden, Kyler, nurse #2 and the speech therapist. About halfway through the session, nurse #2 announces that Caden said “ducky” twice earlier in the day. I find this extremely hard to believe since we can't even get him to consistently repeat “duh” as the beginning sound for “duck.” The therapist (again, we LOVE Caden's speech therapist and she also works at the same place as the PT & OT) gave me a weird look but kind of ignored the nurse. So nurse #2 gets down on the floor next to Caden and starts saying “Ducky. Ducky. Say ducky” over and over and over again. Even if Caden could say “ducky” she wasn't giving him an opportunity to respond because she was pummeling him with words. I wanted to scream at her to get away from him. Thankfully she backed off and left him alone for the rest of the session.

So, the discussions began with the nursing agency. I told them I wanted nurse #1 back when she was back from her training. They told me they wanted me to have both nurses sharing Caden's care. This would mean that one would be here two days/week and the other would be here three days/week. I thought maybe I could put up with nurse #2 if I only had her two days/week. But then when I talked to the agency about it again, they told me that nurse #1 wanted to have a night shift and they had a family that needed a night nurse so she wouldn't be coming back to work for us. So they thought it was great because then we could keep nurse #2 with us full time. I, however, did not think this was fantastic news at all. In fact I told them I really wasn't interested in that. They suggested I think about it over the weekend and get back to them on Monday. So, Greg and I talked about it a lot over the weekend and I talked to some friends about it as well. The consensus was that nurse #2 did not have Caden's best interest in mind and we needed to keep that our priority. Monday morning I called the agency and told them we did not feel that nurse #2 was a good fit for our family. They started trying to pressure me into keeping her because they didn't know how I could know after only a week that she wasn't the right person. So I told them she wasn't listening to me and the things I was telling her and she really wasn't listening to the therapists and what they were saying. This was a HUGE problem and was not acceptable therefore we did not want her back. I told them I would rather do it myself than have nurse #2 in my house. I told them I would go without a nurse until they could find someone else to come out. So that is where we left it on Monday.

Tuesday came and went with no word which wasn't surprising. And then Wednesday (today) they left me a message telling me that nurse #1 is able to come back to work for us. I asked them what happened since she wanted to have a night shift. I guess it wasn't working out quite as well as she had hoped with her own family so she decided day shift was better after all. So, apparently, tomorrow morning nurse #1 will be back to work with us. We will see how it goes. Hopefully things will go smoothly. Poor Caden is starting to show some of the stress with all the changes recently and I think he really needs the stability in his life.

The label of the post says it all, I think... we've just been dealing with nursing care drama! Quite honestly I am tired of all the drama in our lives. I would really like to have a quiet, boring life. That sounds pretty good right now! In your prayers you can request for us to have a nice, boring, drama-free life!