Home, Sweet Home…
Sunday, November 8, 2009
Not the basement, Not Kathy’s house, Not Maryland, actually at home in Bevil Oaks…Beaumont, TX.
Kathy and Mom flew in Friday evening from Maryland and did well on the flight. Mom is adjusting to feeling “different” being at home, but she is doing great.
Kathy and I (Daina) went to church with Dad this morning and we have relayed tons of messages and hugs to her today.
Email Kathy if you need any info about visiting or bringing treats to the house…other wise, check the blog, but we hope to have FAR less news on here by the grace of God that has carried us this far.
hugs from BEVIL OAKS 
DAINA and KATHY
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Leavin’ on a jet plane…
Flight leaves today at 1:30, lands around 4 in Houston. Mom isn’t feeling so hot this morning. Mostly just weak, but her blood pressure is a little low. I’m trying to figure out if one of her meds is causing this, but it’s not really a good day to be experimenting, ya know? Please pray that she does ok for the flight and we get home without incident. Oh, please Lord.
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Care Calendar
We are gearing up for the big move! Besides getting Mom all comfy at home, I’m pretty pumped about going to Casa Ole too.
Anyways, I have opened up a calendar at carecalendar.org, a website that lets me list our needs and lets you log on and sign up if you want to fill them. Simply put, I have put up openings for ladies to visit Mom on weekdays, and meals 3 times a week. Because her information is listed on the pages, though, I really don’t feel comfortable giving the username and password to the page on this very public blog.
So, if you would like to help, there are 2 options. The first is that you can simply email me at rynhill@gmail and I’ll give you the username and password. This way you can see what slots are open and sign up to fill them. The second, if you don’t want to deal with my silly calendar, is that you can just email me with when you would like to help. If you want to visit on Tuesday afternoons for the next 2 weeks, just let me know and I’ll fill the slots for you. The calendar is simply my way of micro-managing all the way from Maryland.
Please help me micro-manage.
~Kathryn
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It’s official, Mom is going home Friday, November 6th-assuming she needs no hospitalization before then. We went ahead and bought plane tickets though, so we’re just going to claim it.
Here’s the honest to goodness truth. Mom is battling some major depression and anxiety. She is also still pretty sick with the gastroparesis, and has some more work to do in many areas. We know that is the anxiety is partially due to her new medication, but I also know that she is miserable in that basement. She needs to be at home, in her own place. She needs her friends. Moving her before her recovery is finished, though, means that I will be passing her off to her doctors, to dad, and to all of you who are there. We need your help and support.
I need to hear from any of you who could commit to helping Mom out once she is in Beaumont. I believe it vital that she have a revolving door of people supporting her. So many of you have offered and wished that you could help, and you have encouraged us emotionally through this. That encouragement has been amazing for us. Now I’m going to humbly ask for more.
I would like to organize some visits and meals for Mom. Ideally, she would have a visitor 3-5 times a week. As far as meals go, I was thinking of maybe 3 a week (Monday, Wednesday, Friday?). Dad will have his ands full taking off work for doctor’s appointments, but maybe if someone wanted to take her out to lunch every now and then, or maybe a ride to her physical therapy. I have found a website that might help me organize things, but for now I just need to hear from you. I promise not to take advantage. Please send me an email letting me know you are willing/able to rynhill@gmail.com.
Thanks so much to all of you!!
K
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A bit of good news
We could all use that every now and then, right?
We saw the cardiologist, and they did an echo to check her heart function. He said her heart looks great!! (it had better, I thought, since her stomach doesn’t work anymore)
It was good to hear that the fluid that was around her heart for so long is finally gone, and the medication for pulmonary hypertension is working.
It was not good that I left her wheelchair in a parking lot on Monday and realized it today. Luckily, it was still right there at the doctor’s office where I left it. Whew.
Now, we must get this gastroparesis under control and Mom can get home. She still has several health issues to tackle once she’s there, but I promised I would let her leave if she would stop throwing up. How’s that for motivation?
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No hospital, just basement
For now. I finally got to talk to one of Mom’s doctors. First, he told us it would take days to get a bed in the hospital due to flu season. Secondly, he thinks he can change her dosage and montier the situation from home. I told him this plan would require him returning phone calls and thankfully, he agreed.
Please forgive the lack of details for now, Mom is still so sick and I’m so tired. Together we make up Team Sick and Tired. That was my attempt at a joke.
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Dear Medical Community,
Please send someone who is willing and able to spend more than 5 minutes with my mother. Preferably someone who cares to see her actually become a normally functioning person again. This might require you to do more than prescribe medications, but we are desperate. Call me. Anytime.
Can you feel my pain?? Mom is having some severe adverse reactions to the liquid form of the medication she was given yesterday. This is, of course, the medication that she needs in order for her stomach to function properly. I need her to be admitted to the hospital, but not one doctor will return my (many) phone calls. I think the hospitalization is necessary because it seems to be the only way to get medical attention for more than a couple of minutes. Surely, some doctor out there could be willing to spend the time necessary to straighten this out. Surely.
I’ll keep you posted.
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Well…
We made it through the weekend without going to the hospital. Whoop.
I can’t say if my medication science project is going to be all that enlightening after all. It doesn’t help that my subject is less that cooperative. We’ll just leave it at that.
She is still having waves of the nausea/diarrhea. We saw the gastro doctor today though. He restated that the test in the hospital showed that she has gastroparesis (which is simply a condition that keeps the stomach from properly emptying itself and can be a complication of surgery). Oddly enough, the medication we were given to treat it (which I kept her on this whole time, in case you were wondering-go me!) is in pill form. Her stomach might not be emptying pills into the small intestine well (which is where they need to be before they can be absorbed into the blood stream-don’t you feel smart?). Yes, I do think it’s interesting that they give pills to people who are having trouble processing food anyways. The doctor is upping the dosage of that medication and giving it to her in liquid form in hopes that her body processes it better. Then we will also cross our fingers that this aids in the processing of the other medications. Understanding this condition better helps me see why other meds aren’t really kicking in, like the Zofran. This must be why she did better once we got her to the ER last time, because at that point she got Zofran by IV. This would also explain why Mom has dropped 30 lbs in the last 6 weeks. Talk about an “aha” moment. Don’t try this diet at home.
Oh Lord, please let us be putting this puzzle together. I hope hope hope that we are close to a solution.
ps. In case you are wondering: No, the doctor did not clamour to look through the lovely journal that I have been meticulously keeping. Maybe next time.
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Don’t try this at home
Yesterday the weirdest thing happened. In one blog previous you can read how frustrated we were to realize that Mom is starting up the same cycle we have seen over and over. I’m coming to a new place in which I can deal with this. I have stopped looking at this situation as temporary, which has helped with my mindset every time we reach a roadblock in recovery.
Last time she was in the hospital with this diarrhea/nausea situation we concluded that the amniodorone (heart medication) she was on was most likely making her sick. We couldn’t find any other causes with the many tests run. Once she seemed to be looking better, they let her go home with a different heart med. Then the cycle began again. It starts with mild diarrhea, building up to serious diarrhea, which eventually leads to the nausea/vomiting. We can keep her hydrated and medicated until the vomiting starts, but at that point she has to be hospitalized. I just knew by the end of the day yesterday we would be there. But around 2pm, she asked for something to eat. This was not expected. Her appetite has been terrible even under the best circumstances. She ate half of a sandwich. I was so surprised that she felt better and chalked it up to the anti-nausea drugs helping (even though they usually don’t). But around 5:30, as I’m cleaning in the kitchen, I hear her talking to Blake in the living room. Upstairs. They went out and sat on the deck together. What?! She supposed to be in the hospital by now! We had some dear friends bring us dinner and Mom even stayed upstairs and visited while we ate. She asked for scrambled eggs and toast and I happily obliged.
We started a journal of food/medication/physical status recently. Only one thing was different yesterday from every other day she has been sick. This was the first day that I didn’t force her to take any medication. This leads me to the only logical conclusion. One of her many medications (or some combination of them) is making her very sick. I feel pretty strongly now that we are not dealing with some infection, or bacteria, or gall bladder problem. We have a medication problem.
This leads to my new research project. I am obviously the only person who is going to take the time to figure this out. I learned that yesterday in my never-ending quest for medical help. Her doctors at this point have run out of guesses. At least that is my assumption, since they are now all referring Mom to each other. When a baby has a food allergy, you take him off everything for a day or two, and then introduce one food at a time until you can pinpoint the culprit. Please know that I do not underestimate my mother’s need for each one of her medications. I know why she needs each of them. My hope is that our little study will not take long, and I’m going to start her back on the most crucial meds first and moniter everything as closely as I can without an echocardiogram. There are 3 that I actually can not take her off of at all.
Her doctor would not like this experiment. If he ever called to hear about it. I would certainly be glad ot discuss any other option with him, but at this point I am desperate. Please pray that her body handles this well and that we can quickly identify the problem with no adverse effects. I’ll keep you posted.
Again, don’t try this at home.
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Deep Breaths in Maryland
Mom isn’t doing better, she’s actually worse. This blog feels like a broken record. I am trying desperately to get this sickness taken care of before the weekend. Being in the hospital on the weekends is like being is a shabby hotel where someone brings you your meals and meds and wakes you up every 2 hours at night to see if you’re ok. Nothing happens, no tests are run, and the big explanation for the lack of action is that it’s the weekend. I can’t believe they can actually say that with a straight face. I’m going to give that a big fat What The Fruitnut.
We’re also trying to avoid the ER, however. This means I might try to have her admitted tomorrow to simply be proactive. She needs a gastrointernologist and possibly an infectious disease specialist. If you know anyone who can be reached by phone, owl, anything, that would be awesome.
K
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