too much, darling, too much (the incredibles)

Just because you get a diagnosis and get treated, does not mean you are free from worry and stress. We come home and I have to be the home nurse, give her the meds, flush her line and worry about why she isn't eating and looking pale. Saturday was a rough day for me.
So when we returned home for the hospital we got the delivery of her medicine for her line. There wasn't any heprin in the delivery so I had Jake run out in the pouring ran to stop the van and asked about it. He said the new lines now days don't need heprin, so she should be fine. In the back of my mind I thought, I still need heprin, I wasn't feeling comfortable without it (heprin is used after a saline flush, through the line, to lock the line so it won't get blocked. It has called heplock). I just went with what he said. We did fine until saturday. Jake was out of town to wyo (of coarse this has to be the case). I pushed and pushed, and no medicine would go in, and no blood would come when I pulled back (which is suppose to). I was frustrated. I called ICS at primary and they asked if I had done this and this, and I had done this and that. It was inevitable I had to call home health care. I have not had awesome experiences with IHC home health care, the politics that go into health and insurance at times is a joke, but I needed some heavy duty heprin to unblock this line.
When the medicines were delivered the night we got home from the hospital a nurse from home health called and wanted to show me the how to care for the line. I told her I knew all the procedures and wanted to save her the time and energy to come out to my house to show me what I already knew. Well one thing I had forgotten was that I had to jump through their hoops to get medical care. I wasn't reminded of that on this night, I was reminded on saturday morning.

I finally got a hold of the home health care on call nurse. I told her my situation and she explained to me that Chloe was not in their system, there is nothing she can do for me and I would need to go the the ER to get her meds started. I explained that I should be in the system because they gave me drugs and were delivered to my house. Again she told me she couldn't come out to help because Chloe was not entered as a currant patient. I was being denied health care? The ER is 200g's, plus every time we go there we are sent down to primary because they either don't know what to do, or that Chloe is just a special situation. I didn't want to go there. I called ICS again and told them the home health won't come to my house. Jake was gone, was I going to have to go down to primary, get it taken out, put a new one in? Leave my kids here? Was she seriously not going to come to my house to help me get the meds started?

I told ICS nurse about the heprin situation, and she said some lines still do need heprin and some are different and I needed the heprin. She called home health care while I was waiting and calling Jake letting him know and taking care of kids and trying to push the saline through her line, and nothing happening with her line. I got a call back after a few minutes from the on call nurse, I heard her typing and she said "OH there she is." But you told the nurse you didn't need her the night you got home from the hospital, you said you knew how to take care of the line. YOu have to be entered in and sign all our paperwork to get our services." OK, yes, I did say those things but in my defense (which I did not inform her of) when she got out of the hospital as a bone marrow patient and needed home health I didn't have to sign all the papers, I had forgotten it has been three years since I have used home health, and to be honest I hated to admit we needed it again.

We got things scheduled and she would come then ironically right after I got off the phone with her, I tried the line again and got the medicine to go through, but slowly.

To make a long story short (too late) the nurse finally came, did all the hour long paper work and went through all Chloe's medicine she wasn't on anymore (boy she was on a lot of stuff back then) pushed the heavy dose of heprin through, I waited two hours to settle and it works great now. Chloe is on the services of home health until she get her picc out, and I have heprin to flush it with. There is more stress to this story (little things going wrong) but if I listed it all this post would be too long.

Nothing is easy with five kids, but having this happen and doing it by myself was a little too much for me, but you can see from the picture her face is getting way better. I think she will have some scarring on her chin (bummer) but how much I am not sure. Her line is working and dressing was changed and now today I can breath.

ps my other kids didn't end up going to camp hobe because the form we need to fill out for them to attend asked specifically if they were exposed to chicken pox, and of coarse they have so I didn't want to risk going and being turned away, or exposing anyone else. Next year they will go.