Sunday, October 14, 2007
Sunday October 14th Current mood: creative
It's been a while since I last updated. Not too too much has changed since then. Well, nothing too bad I should say!
Since yesterday, MJ has been smiling and making some noises like her old self again. She now focuses on us and smiles when she sees us or we say something that she thinks is funny. It has taken 2 weeks to get her back to normal mentally like she was pre-surgery. I was beginning to think that maybe something was wrong because she would not focus on us and would not be still for longer than a second, literally. She is kicking her legs up in the air and kicking her animals that dangle above her head. We are still working on getting her head control back. After laying sedated for almost 3 weeks, her muscle tone is.....how shall I put it? ZILCH?!? That's okay though, this is something that we can work on. Obviously she isn't going to be crawling at the normal age, walking, or talking (probably) but none of that matters to me. I have my precious little miracle baby with me in this world and we can overcome anything with a little bit of time, or as she has shown us A LOT of time
We had a scare at the beginning of the week. She had some blood cultures that were drawn from her arterial line come back positive for Staph. Icky! Yuck! The last thing she needed. However, they have done the blood cultures every day since then from her arterial line and her Broviac (central line) and so far there is not any sign of the staph in her blood. However, she did have a swab done of one of her chest tube sites and it came back positive for staph. She is on antibiotics for that and she is also having some ointment applied to the sites. She had some puss come out of her sternal incision, but they started putting Bacitracin on that as well, as so far it is looking better.
Please just continue to pray that everything will continue to go well. If things keep looking up, we might be able to go to a room maybe this week. She is still gagging but has only thrown up about a cc in the past week. They are slowly increasing her feedings and by that I mean 1 cc a day!!! Today is her last day on the TPN--woo-hoo. That stuff can be hard on your liver, so I am always happy to get her off of that.
Remember I said the people out here are rude? I have a little story to share with you. (perhaps I shouldn't say everyone is rude, there are a few nice non-snobby souls out here). The other night I was getting gas at a Shell station. I had called one of my best friends to chat because I was really upset and stressed and was sitting at the gas pump in my car talking. It was 10:30 at night and there are literally 10 gas pumps at this particular station. Well, I am chatting away and this woman walks up to my car banging on the window. She is screaming at me in Spanish! I opened the door to see what she wanted and she was cussing me out and telling me to move my car so that she could get gas in her car. I was like what the heck is this woman's problem?! There are 9 other pumps available!!! She kept screaming and cussing so I shut the door and went around to the pump across from where I was. At first I thought she worked there and was pissed that I was just sitting there then I figured out that she wasn't. So therefore when I had pumped my gas, cut my phone call short, and paid I hopped in my car and said some not so nice things to her as I left. I swear I don't know what her problem was but she thoroughly pissed me off.
We have had an awesome nurse Brian for several days in a row now. He is by far our favorite nurse here!! He acts like he cares about his job and takes really good care of MJ. The other day he put her halloween pants and socks on her and her cute little hat. I will try to post some pics of that this week sometime. He mentioned that we needed to get her some halloween blankets to lay on. Well, that got my interest and today I went to Jo-Ann's fabrics and picked out 2 halloween fabrics to make blankets out of. (HAHA no I am not making them, my mom is ) I also found some flannel material that I couldn't resist. I bought some tinkerbell, care bears, and Raggedy Ann and Andy. They are soo cute, in my opinion. I also bought some stuff to make MJ a name sign for her bed. She now has a Tinkerbell name sign!!! I can't wait to be able to scrapbook again. I realized today how much I missed it.
Well, I think that is all for now. Anyone have any good jokes to send me? Laughter makes me feel better and I would like to hear some jokes. So much serious stuff goes on every day that I cherish the times we are able to laugh. Thankfully, MJ has had us smiling a lot lately.
Oh yeah, before I forget. On top of thinking that MJ had Staph, we had to deal with money this week. We found out that Macy Jane has maybe 2 weeks left on her insurance. Yep, she's reached her max of 2 million in 5 months basically. The reason for that is this. Guess how much it costs per day out here. Come on guess. HAHA, you weren't even close. $20,000 yep, that's right twenty thousand dollars a day! Unfreaking believable. The reason it is so expensive per the insurance lady is that we are paying for all of the deadbeats in the country that rely on the government for insurance and money instead of getting jobs themselves. Grrrr.....we all know how I feel about that. Anyways, we were thinking oh great! Steve doesn't have time to get a job out here before her insurance policy lapses and we are going to be stuck with hundreds of thousands of dollars in medical bills.
Well, Monday I filled out an application for Social Security for MJ. I had an appointment on Friday with them and found out some good information. Pretty much by law, if you have a child that has been in the hospital for at least 30 days consecutively and there is no insurance left, they will pay the hospital bill while she is in the hospital without looking at our income (thank God because even with Steve working, we still make too much money---according to them) Once she is discharged, we have the disability coverage for the remainder of that month, but we have to apply for it again and they look at our income at that point.
I was pretty upset about her private insurance lapsing because we really do not want to have the government breathing down our necks forever telling us how much money we can make. If we were on SSI we could not ever have more than 3,000 dollars to our name and we would have to live paycheck to paycheck. However, I called my dad one day bawling and being the wonderful dad that he is, he called some of his contacts. He gave me the name of a woman named Theresa at an insurance company and told me to call her. If anyone knew the answers to our questions, she would. I called her and explained our situation and our need to keep her on private insurance. She gave me the best news possible! Whenever we have an insurance policy that reaches its maximum we have 63 days to get her on another insurance policy before they consider it a lapse. So now Steve has a little time to find a job without us stressing out. God works in mysterious ways and I am so thankful for the 63 day law. Of course, when we get back to Memphis the job situation is up in the air. But the beauty of all of this is that Steve and I are in a wonderful profession where we can job hop and have insurance without too much difficulty. If we have to move, we will. Florida is sounding nice again, haha. It takes about 30 days to get her approved for SSI, but they will backpay since I applied on the 11th officially. Yay, I don't have to file bankruptcy down the road (well, yet anyways haha).
Okay, that's it for real now. I hope everyone is doing well. Please continue to keep us in your prayers!!
Much Love
Bethany