I think I'm broken....

Or at least I've sprung a leak. I've been boo-hooing all day today. Could it be due the fact that I started a new anti-depressant and I may need a bit of a higher dose? Could it be due to lack of sleep and the stress of staying up late at night with Jess and then having to get up early to get my boys off to school... maybe because Karl has been in Phoenix (and working) so much and not here to help relieve a little of the stress? Maybe it's because my fibromyalgia is really acting up from the cold that we are not accustomed to and I'm dealing with a lot of pain... Maybe it could be that Jessica had a lung bleed Friday and all those fears have resurfaced or that she is having a lot of pain too. Or possibly because someone at the nursing agency has it in for us and has been causing all kinds of problems for the last few weeks and has been contacting Jessica's new case manager and trying to convince her that we are abusing the system and mis-using the services?

I got a call from the case manager today and she wants to have a meeting with me and the nurse supervisor from the nursing agency and see what services Jessica REALLY needs. She said something about "this has been going on a long time and I just walked into the middle of it" (huh?) and "maybe Jessica was a lot sicker when these services were set in place and she is doing better now". As soon as I started to talk to her I fell apart. Jessica is NOT getting better, if anything she is getting worse. I told her about the lung bleed she had on Friday and sobbed as I explained to her that there is nothing that can be done to help her. I quivered as I answered her question as to what is causing the bleeding - thousands of collaterals (blood vessels) that go from the aorta to the lungs that are bulging... waiting to burst and bleed into the lungs. We had thought that we had the bleeding under control with the morphine but now she is starting to have some bleeding and it could get bad really fast. She is having more pain and doesn't even feel well enough to have her hair washed most days. The case manager asked if she could get some type of blood clotting agent and I explained that Jessica could be having TIAs (tiny blood clots going to the brain) because her blood is already too thick due to lack of oxygen. No, we can't do anything that could make her blood even thicker. We are going to see a neuro-opthomologist next Thursday to see what he thinks. We also have to see the pulmonary doctor and cardiologist in next couple of weeks. We have so many appointments coming up that I just didn't know whether I was coming or going. I kept apologizing for crying the whole time - (I HATE that! I prefer to cry in private - if at all.) She finally said, "It seems like it's not a good time for us to get together so call me when you have time." *duh!* I don't think it's ever a good time for two outsiders to come in and gang up against me and see how many services they can take away! What good am I going to be to Jessica if I am so exhausted I'm in a coma or so stressed out that I'm in a straight-jacket in a padded cell? (ok, so I'm being a drama queen here, but hey, today it feels that bad)

The only service they are providing is for home health aids to come and care for Jess for a few hours a day. They help her have her bath, do her hair, help her dress, fix her food, remind her to take her meds (that I set out) and keep her company when I have to run errands like buy groceries or even have a nap. (oh, the abuse of the services - as if I'm out partying every day) Apparently someone (THE person - I won't name names) asked one of the aides if she does dishes and she said yes. OH NO! Call the police! They are only supposed to do Jessica's dishes - and only once a week, apparently. So now everyone is in a frenzy because a couple of aides want to be helpful. PUH-LEEZ.

I was back in my bedroom where hopefully, Jessica couldn't hear me sob. I tried to pull it all together because she needed me and after a few minutes the phone rang. It was the case manager again. Oh great, now what? Well, she sounded a bit compassionate this time. She said that she noticed that we are not receiving nursing services and they could provide that. I asked if she was offering a once a month scheduled visit or if I could call someone to come over and take a listen to Jessica's lungs and take her vitals if I thought she was getting into trouble. No. It would be a once a month visit. No thanks. I had to explain to her that we already went that route and it didn't seem to help. Last winter we had a nurse coming out once a month and 3 or 4 days after one of her visits Jessica was hospitalized with pneumonia. Jessica can get very sick very fast. The nurse wasn't able to pick up that she was getting sick. Also, I have a pulse-ox that I use to monitor her O2 sats and heartrate. She is having some PVCs but the cardiologist is aware of those and there's nothing they can do about it at this point. Again the tears start. I can see the PVCs on the pulse-ox and again, I didn't think that a nurse coming to take vitals once a month would really be beneficial but thank you anyway. I am up late at night with Jessica then up with my boys while she is still sleeping, so I catch naps any chance I get. We have so many appointments that having a nurse come was just one more appointment I had to be up for. Again I appologized for being so emotional. She responded that we are going through a lot and that it's natural for me to be overwhelmed and that I don't need to appologize. All of a sudden the phone went dead, the oxygen concentrator started beeping and the lights went out. GREAT. The power went out. (I know I paid the bill!) I went outside to get an oxygen tank to hook Jessica up to since her concentrator doesn't work without electricity. Wonderful... the tank is empty so I have to take the regulator off and put it onto a new one. It's windy and coooold! The wind was blowing right through me - pain! So while Jessica calls me from her bedroom that she is scared, I frantically hook up the oxygen and try to calm her down. Thank goodness for the princess light I got for her that runs on batteries! It was daytime but so cloudy that it was fairly dark inside the house.

Then the lights come on. yay. Then the phone rings. ugh! This time it's my neighbor who wants to know if my lights went off too. Good. I'm glad it's not someone who wants to yell at me and at least it's not just my house or my fault the power went off. After a few more tears talking to my friend (she is the one who's mom died from cancer a few months ago) I felt better knowing that she cares and is on my side. I decided to call the case manager back so she didn't think that I just hung up on her. I NEED her on my side. The case manager seemed concerned and apparently she had tried to call me right after the phone went dead. She was hoping that everything was ok. I explained to her that I was outside getting the oxygen ready for Jess. She didn't even think about my having to take care of oxygen needs with the power going out... maybe she will get a little bit of an understanding what is involved in caring for Miss Jess? I can only hope. She seemed to end on a fairly good note and said for me to just call her when things settle down a bit.

The power went on and off all afternoon. I used my land-phone to call the power company and apparently there was a lot of that going on due to the high winds. When Jessica's aide came we decided that Jess should not have her hair washed. What if her hair was wet and the power went off? She would freeze and get sooooo blue if we couldn't get her hair dried right away. There have been many times lately that Jess will get a bit chilled just by getting out of bed to go to the bathroom at night and she just shakes so badly... teeth chattering and body shaking uncontrollably - then she tells me that she hurts all over. We don't want her to get chilled! So I am going to have to help her wash it tomorrow. There's no aide scheduled until Monday - at least I hope they have filled that spot. Tuesday I get to go get my head drilled off - I have a badly cracked tooth and need a crown. Oh, the fun never ends.