Virgin Mobile Service Sucks

This is the new phone that I bought myself for my birthday. It is so much better than my old phone with a much better plan. It has a pretty decent camera and google maps etc. I was really excited about using it, but when I tried to swap my phone over, I got a message that the swap failed and to call 888-322-1122. If you want to be really frustrated by failed customer service call that number. First you get a never-ending automated options menu by Alex, who doesn't offer help swapping your phone as an option. Then they send you to talk with their customer service representative. But since all they are so busy, they thank you for your patience and blare Pakistani techno trash in your ear for 10 or 20 minutes. When you finally get to talk with the representative, they introduce themselves as Eric or Alice. How many Pakistanis do you think have perfectly Americanized names? They are genuinely friendly and empathetic with your problem, but they have no power to fix it. They tell you that they are having a service upgrade and to call back later. Then they tell you it can be 24-72 hours. Funny thing is when you go to their website there is no mention of a service upgrade that is disrupting some services. Oh, and for me it's been 4 days that this mess is going on, and that is way over 72 hours. I would highly recommend that you not consider Virgin Mobile as a cellular provider. They won't be responsive if you have a problem.

Weird Dream

Last night I had a very weird dream. Since I've been using the CPAP machine I've had some doozies. In my dream Tim came over to my house with Jack to borrow some insulin pens and we all sat around eating cake. I don't use insulin and never have had a pen. And unless it was someones birthday, I wouldn't have cake at my house because I don't like the crumbs that get spread around. Today Tim called and said that Jenn had only been given a one time prescription for 50 test strips and was running out. The meter Jenn has calls for the really expensive strips that aren't affordable without a prescription. He asked if I had any around. I had a few and a matching meter that I keep around as a back-up. The strips for this meter are somewhat affordable. So he and Jack came to my office to get the meter and strips. While Tim was signing in at the front desk, a couple of vendors that I work with came in bearing boxes of cupcakes. They gave Jack a large chocolate covered one which he immediately buried his face in. Then we went down to the cafeteria and had a visit while Jack ate his cupcake. It was so much like my dream that it freaks me out a little bit. Maybe I should dream about winning the lottery.

50,000 Troops still on the ground in Iraq

It's on every news media that I have seen in the last few days. The troops have left Iraq. Well, almost. There are still 50,000 troops on the ground in Iraq in an advisory position to the Iraqi army. Unfortunately Matt is still there. He was in the first wave of troops that made their way across the desert in 2003, and it seems that he's going to be one of the last out. It breaks my heart because I want my son to be home where he is safe, and I want my grandsons to have their father back. So, please don't stop praying for the troops in Iraq. They are still there.

Last Night

After work last night I took the back road route to the hospital so I could look for one of those people who stand on corners and spin signs announcing hot and ready pizza deals. In the Woodstock area, they are on almost every commercial corner. But Dekalb County seems to have a dearth of them; I never found one. Instead I found a small shop that had a logo that looked borrowed from Circle K convenience stores. I was afraid that I was ordering cardboard crust spread with catsup, but was happy to find a really good pizza place, and a three topping pizza for under ten dollars.

Jenn had been in ketoacidosis when I had left the previous night, so I was not expecting much of a change. Again, I was glad to be wrong. She was sitting in bed sans any tubing except her central line and eating dinner. Well, picking at it would be a better description. Emory University Hospital has the best medical staff I have ever seen in one place, but they could use to hire a chef with dietary knowledge. It can be argued that Jenn is on a special diet, but seriously? Food does not need to be loaded with simple carbohydrates to taste good. If it is prepared well, it doesn't even need to be loaded with a lot of salt or fat. This food was just over cooked and not chosen well. She had salad with no dressing and butter with no bread. She also had white rice, fruit cup, corn and an apple. It looked to be about 6 servings of carbs. Along with that she had processed roast beef in a salty gravy. So much for the plate method. Oh, and they didn't bring her a drink. Tim got her a diet coke from the cooler. Left me wondering what they were thinking. Needless to say that she didn't eat much of it and we went looking for things for her to eat so she wouldn't go low.

Tim texted me this morning that Jenn has been moved to a regular room. I doubt that the food will be any better, but maybe she can work with a diabetes educator to determine what on that plate she should be eating.

I'm going to take a break from the hospital tonight and get to bed on time. If she is still there tomorrow, I will go over after work.

So glad she is better.

The longest week

Tim has posted about Jenn, so I will be less cryptic. Jenn has spent the entire week in the ICU with DKA. They intubated her on Monday afternoon and she stayed on the ventilator until yesterday. At first she did well, and there was talk about getting her to a regular floor but when I arrived back tonight after a one day absence, she is pretty much in the same place where she was when they brought her in on Monday. Her glucose levels only stay stable when she is on IV insulin. When they put her on shots, her glucose levels rise and she goes back into DKA.

The decision has been made to send Jack to Jenn's parents house where his grandfather and close family friends will care for him in an environment that he considers to be fun. They will be able to keep him on a schedule and in a less stressed environment.

I was absent from the ICU for one day to take Lizzie to the University of South Carolina. Two days before she left, her friend who was supposed to be her room mate decided to go to Oglethorpe instead. Lizzie for now is without a room mate and feeling quite alone. She does like the other 2 girls in her dorm suite. But she is the only one without a room mate. I'm sure in a few weeks she will see this as the positive thing that it is.

As for me, I am more exhausted than I have been since I was on chemotherapy. And because Krista backed out, and I had to buy Lizzie all the shared things that Krista was bringing, I am more broke than I have been since then. Also, having spent the last week in the ICU instead of at work, I have no vacation left. I'm going to have to scrap my plan to visit my sister until next year. I will just have to loose a day or two when Matt comes home. Gotta do what you gotta do.

Another Day Past

I spent the day with Jack and he is tolerating the disruption of his life somewhat well. He misses his family and his routine. He wants his momma and daddy and his life as usual, and who can blame him. I try to keep to the schedule, but nothing here is routine. I woke him up from his nap at the usual time and I clearly should have just let him napped it out. A lesson for today. And while all of this drama is going on in my family it is hard to realize that all the pain in the world isn't being dumped on us. Edwin Leap lost his long time partner and friend to a particularly awful kind of cancer and Chrysalis Angel is experiencing medical problems in a very positive way. I know that there is more out there, but right now I doubt that even Job had the world view to realize that he wasn't the only one suffering during his trials. Right now, at 1:30 am Jack has woken up and is crying for his mother. Little more can be done than to allow him a pacifier and a favorite toy. He isn't a cuddler. I wish that I could do something for his pain, but here it is. He's too young to deal with it by himself and there is no way to make him understand that Momma will come home soon. He doesn't understand temporary. If his mother is off the ventilator tomorrow, I will take him to see her. Thank goodness that she is in a hospital that allows children in the ICU.

2:19 update. After offering Jack his milk which he didn't want he finally decided to sleep on the couch with his froggy pillow and a nubbly throw blanket that is kept on the couch. He is much happier and has even managed a smile. Still, he clearly misses his mother.

2:30 am and I just can't shake the last few days

It started a week ago. My grandson was officially diagnosed with hemophilia. Then over the weekend my other grandsons came up for a visit and it was a glorious time of the kids being together, despite one of the DIL's being under the weather. The kids had a great time together. But on Monday the minor medical problem we suspected for the DIL showed itself to be a major medical problem. And this is Jack's mother. Neither family needs more stress, but adjusting to one stressor at a time has it's advantages. Well, the minor virus we suspected has shown itself to be a formidable foe. Jack's mother is on life support. I spent the day crying with her mother and the family in the next room, who lost the battle with their loved one. Today I will cry while I take care of Jack. We all still expect that his mother will recover, but this has been a shock to her. It will be a while. She isn't going to just show up at work on Monday. Jack asks for her, but we can't take him to her because she can't respond to him. There are many more issues we have to confront in this problem. I can't say what all of it is, but I will not be the winner in the best case senario. Still, love sacrafices. I wish I didn't need to be so cryptic, but HIPPA and all. If they disclose it all, I will talk about it. I think if we wrote it all down it would be a good episode of House MD. Maybe if we sent her case to the writers, they'd give them enough money to pay the medical bills.

Rough and Tumble Boys

Clifton and Tony are up visiting from Ft. Stewart today, and Tim asked if I could watch Jack as he and Jenn both needed to be out of the house this morning. It's a rare chance to get all the boys together, so I took it. On our way here, Jenn called and said that she isn't well, but could we come over anyway so she could get some rest. Absolutely. When we arrived, Jenn had called the Hemophilia Treatment Center because Jack dropped a stool on his foot. It was bruised and beginning to swell. I didn't think we were going to get much of a visit, but the treatment center said to ice the foot and keep an eye on it for changes. So that's what I've been doing. The boys all love cars and noise, so they have been playing well together and it's been fun to watch them. While Nina and I were fixing lunch, Clifton ran into the corner of a table and banged his head hard. Jack watched while I gave Clifton the ice to hold to his head. I think it made Jack a little more accepting of the ice. So, the first crisis since the diagnosis has come and we are all learning that it is manageable. Maybe someday we will all accept this as our normal.

Hypertension Update

Day three of being on half meds and my hypertension is being controlled well. Today's reading was 117/77. It is nice to see readings like that and know that it can be done with so little medication. Kind of hard to cut those tiny little pills in half, but well worth the effort.

Last Saturday

I haven't written about it until now because we didn't really know what it was. Then, I thought that my kids should make the decision about whether this gets put out on the web. Last Saturday I woke up to my phone gently vibrating near my feet where it had been plugged in. I turn the ringer off when I sleep because of the Long QT Syndrome. I'd missed a couple of calls from my son. He and his family were at Childrens Healthcare of Atlanta, and had just been admitted onto the hematology floor. I rushed over with food and toys in tow and waited with them for the diagnosis. Jack has had a history of strange bleeds since he was an infant. Before Saturday the attempts to find out what was causing just led to frustration. Leukemia had been taken off the list before I got there. The question that usually lead to taking hemophilia off the list was asked and answered, but the blood test proved the answer to be deceiving.
"Is there a history of hemophilia in the family?"
"No"
They suspected a clotting condition called Von Willebrand Disease. That would make sence. We are redhead's; we bruise and bleed easily. It would have also been a better diagnosis. Yesterday all the test were in and my son and his family met with the hematologists again. Jack produces less than 1% of factor VIII. Jack is a severe hemophiliac. He will need frequent infusions of clotting factor for the rest of his life. My son is a paramedic, so these can be done at home. Still we are all reeling. I haven't stopped crying since I found out. This is serious. Perspective says it could be worse. Leukemia could not have been removed from the plate, and that would be worse. We saw a lot of kids on Saturday whose prognosis' are much worse. We will adjust. The families of children with type 1 diabetes adjust. It's just that for now, we are all in shock.

Right Direction

I had my 6 month nephrology appointment today. I like this appointment because I like this doctor and his staff. It's also an easy one because it is usually so brief. I never have a long wait in this office and I'm usually in and out in less than an hour. Labs are done a week before the appointment, so the doctor has the information there in front of him to discuss with me. It's a very productive visit. Since I've been seeing him my potassium levels have stablized and my hypertension has been controlled. Today, my blood pressure was a little low probably due to me sleeping with a cpap machine. So the doctor halved my blood pressure medication. It is so nice to have to take less rather than more medication.

Oh, and the oncology appointment last week went well too. Get to do it all again in six months.