Well, I got the phone call I've been waiting for this morning. A sweet lady named Mollie called from UCD's managed care department to tell us that we've been officially denied our request to go to Stanford. The reason is that they have determined that UCD can offer the same level of care as Stanford. I disagree. Other bad news: they can also offer the same level of care as UCSF. So we've been denied to go there too. Because our insurance is POS we can choose to still go to Stanford and pay a 20% copay. So, what is 20% of a million dollars...oh, way more than we have to spend.
Of course I sobbed on the phone with Mollie (poor thing, I bet that happens a lot) and she said she is going to help us find a way. She is going to contact CCS to see if we qualify (we definitely don't qualify for income, but we may be able to qualify with specific diagnoses) and they may cover the copay. The other option is to begin the appeals process, which I probably will anyway, but I have to wait until I receive the denial letter in the mail and then the process takes about 30 days. We only have 37 days until our scheduled surgery date at Stanford. Of course, the final option is to just schedule surgery at UCD.
My heart is heavy. I am so disappointed. I was really hoping and praying that we would be approved on the first try. I know it's not the end of the world, and we have time to work it out. I know Drew will have the surgery that he needs and it is in God's hands. But it is so frustrating. We already had a date and a plan and it feels like we are starting over from square one. We have made plans for the summer around a surgery date of May 23. If that date changes, so do all of our plans.
Showing posts with label mood. Show all posts
Showing posts with label mood. Show all posts
Wednesday, April 16, 2008
Sunday, February 10, 2008
February 10th
Today is the anniversary of the worst day of my life. The day that we found out that no, we didn't have a perfect healthy baby boy the day before as we had thought. We had a very sick baby. And I relive each year on this day the moment I found out. I remember running behind the basinette as they rushed my day old baby to the NICU. I remember waiting outside the NICU while they stabilized him. And mostly, I remember that I only had a few hours of the bliss of having my brand new baby before it was destroyed by the reality that we might not ever bring him home with us. Those first few days are a blur, but not because we were sleep deprived by having our newborn wake us up every few hours. It was the shock, complete upheaval and disbelief. It was meeting with doctors, lots of them, to hear a diagnosis, a surgical plan, discussing our options that exhausted us.
I fight these feelings every time they come. I don't want to think about this stuff. I know that I am blessed abundantly by my family, friends, and church. It's not as if I am sad about today. I think I am greiving that one, horrible day. And every year from now until April 18th, I compare what we are doing now with what we were doing then. Feb 16, the day Drew had his first open-heart surgery. Feb 29, diaphragm placation & extubation, Mar 9 transferred back to UCD, April 13, g-tube surgery, and finally April 18 the day we brought him home, ten weeks after he was born. And mixed in there are Valentine's Day, my birthday, and Easter. All of which we "celebrated" in the hospital.
Every year I think, this will be the year that stuff doesn't bother me anymore. Yes, that was the worst day of my life, but that was then and it's over. But I wonder if that day will ever come. Maybe it's the kind of thing that I will never forget, never stop grieving. And so what if I have a couple of blue days around this time every year? The reason I fight these feelings is because it's unpleasant. It doesn't feel good. I want to focus on the positive. But maybe these feelings demand to be recognized. Maybe if I honor them and really feel them on this one day they can be safely tucked away the rest of the year.
I fight these feelings every time they come. I don't want to think about this stuff. I know that I am blessed abundantly by my family, friends, and church. It's not as if I am sad about today. I think I am greiving that one, horrible day. And every year from now until April 18th, I compare what we are doing now with what we were doing then. Feb 16, the day Drew had his first open-heart surgery. Feb 29, diaphragm placation & extubation, Mar 9 transferred back to UCD, April 13, g-tube surgery, and finally April 18 the day we brought him home, ten weeks after he was born. And mixed in there are Valentine's Day, my birthday, and Easter. All of which we "celebrated" in the hospital.
Every year I think, this will be the year that stuff doesn't bother me anymore. Yes, that was the worst day of my life, but that was then and it's over. But I wonder if that day will ever come. Maybe it's the kind of thing that I will never forget, never stop grieving. And so what if I have a couple of blue days around this time every year? The reason I fight these feelings is because it's unpleasant. It doesn't feel good. I want to focus on the positive. But maybe these feelings demand to be recognized. Maybe if I honor them and really feel them on this one day they can be safely tucked away the rest of the year.
February 9th
February 10th
February 9th
February 10th
Thursday, February 7, 2008
Sad/Glad
Today was kind of a hard day for me. Dan is not feeling well, so I had all the birthday preparations to take care of on my own. I know a lot of moms do most of the work involved in taking care of the kids and the house, but Dan really does a lot. So to have him out of commission was a big deal. I was very stressed out. And then I was sad.
I usually get sad around Drew's birthday. I guess it's just a reminder of the shock we felt when we first learned of his condition and all that it would take to keep him with us. But I don't want to be sad! I want to be happy. I have a beautiful son, with a beautiful heart, and I would not change the way he is. I love him. It's not that I start thinking about that time in the hospital and the surgeries and the despair AND THEN feel sad. I just feel sad. Without thinking about anything. A friend of mine explained it to me like this. Your body just remembers. It's like seasons. A certain time will come around and my body remembers what it felt like. Anyway, since this typically happens around Drew's birthday I have been dreading it. I have been anxious in anticipation of it happening. So I'm hoping that was it and it's over.
Luckily I have a wonderful friend who graciously came over this afternoon and helped me out. She made more cupcakes, decorated them, helped me fill the favor boxes, get some dinosaur games ready, and prepare food. She also entertained and loved my children. She did all that while being 9 months pregnant and ready to have her baby any minute. Am I lucky to have a friend like that, or what?!
I usually get sad around Drew's birthday. I guess it's just a reminder of the shock we felt when we first learned of his condition and all that it would take to keep him with us. But I don't want to be sad! I want to be happy. I have a beautiful son, with a beautiful heart, and I would not change the way he is. I love him. It's not that I start thinking about that time in the hospital and the surgeries and the despair AND THEN feel sad. I just feel sad. Without thinking about anything. A friend of mine explained it to me like this. Your body just remembers. It's like seasons. A certain time will come around and my body remembers what it felt like. Anyway, since this typically happens around Drew's birthday I have been dreading it. I have been anxious in anticipation of it happening. So I'm hoping that was it and it's over.
Luckily I have a wonderful friend who graciously came over this afternoon and helped me out. She made more cupcakes, decorated them, helped me fill the favor boxes, get some dinosaur games ready, and prepare food. She also entertained and loved my children. She did all that while being 9 months pregnant and ready to have her baby any minute. Am I lucky to have a friend like that, or what?!
Friday, February 1, 2008
Hope
I had an interesting day yesterday. It's amazing to me the range of emotions I can feel in any one day. In the morning I was fine. Drew was at preschool, Ava had some little friends over to play, life was generally good (except for my ridiculously cranky daughter). Then everyone left, Ava went to sleep and Drew was watching a movie. I sat on the couch, immobile. This business of trying to choose a hospital and a surgeon for Drew's upcoming surgery is driving me crazy. I wanted to crawl into my bed and pretend like it wasn't happening. I told Dan I was in a funk and I couldn't think of anything that would make me feel better. I was unable to make any decisions and if he wanted me to go to the grocery store he would have to make me a list. So he did and I went. Once I got there, I noticed he wrote at the bottom of the list "anti-funk treat." And I almost cried right there in the grocery store because he is so sweet and loves me even in my funkiness. Then I went to the pharmacy and they asked how Drew was doing. I told them, he's fine, but I'm not, holding back the tears. Finished my shopping and ended up at the cashier who also asked me how I was and I seriously had to bite my lip to keep from crying. Am I nearing the Britney Spears danger zone? I hope not, but sometimes I wonder. Anyway, I made it back to my car where I announced to no one in particular that "I am not OK" and then sobbed there in the parking lot for a while. I just don't feel qualified, knowledgeable, or capable of making this decision. There are so many factors. And I am not a pediatric cardiologist or surgeon or nurse or anything close. So how do I decide?
Last night was also the Hearts of Hope meeting. Dr. Mainwaring, a pediatric heart surgeon from Sutter, was there to speak with us. And, believe it or not, I left that meeting filled with hope and certain that Drew would be ok no matter which surgeon we chose (which, by the way, doesn't make the decision much easier). Each time I hear about the history of congenital heart surgery and the advancements they've made I'm in awe. Did you know that infant open heart surgery was pioneered in the 70s? As in, if you were born before that with a serious heart defect there was nothing they could do for you. And it wasn't until the 80s that they began to do heart surgery on newborns? This is a brand new field compared to most of medicine and they've already drastically reduced the risk of these surgeries. The Fontan, which was one of the options for Drew's third surgery, was orignally done in the 70s and 80s with a risk of 40%! Now it is considered one of the simpler heart surgeries and only has a risk of 1-2%. That is amazing!
Of course, I had a list of questions for Dr. Mainwaring, and he graciously answered each of them. Now I can see why all his patients love him. I sort of wanted to give him a hug before I left. I told him about Drew's situation and he said it was not unusual to do a Norwood and Glenn with his anatamy. He told me that Dr. Hanley actually trained Dr. Azakie when he was at UCSF (small world!). And he also said that if he really thought one hospital was much better than the other he would tell me, but that they both have great programs and great surgeons. He advised me to ask questions about statistics and use the numbers to help guide me. That was all very helpful information.
Oh, one last thing, a reporter from the Sacramento Bee was at the meeting last night and interviewed me about our story. I believe the article will be in the paper next week some time, so keep an eye out!
Last night was also the Hearts of Hope meeting. Dr. Mainwaring, a pediatric heart surgeon from Sutter, was there to speak with us. And, believe it or not, I left that meeting filled with hope and certain that Drew would be ok no matter which surgeon we chose (which, by the way, doesn't make the decision much easier). Each time I hear about the history of congenital heart surgery and the advancements they've made I'm in awe. Did you know that infant open heart surgery was pioneered in the 70s? As in, if you were born before that with a serious heart defect there was nothing they could do for you. And it wasn't until the 80s that they began to do heart surgery on newborns? This is a brand new field compared to most of medicine and they've already drastically reduced the risk of these surgeries. The Fontan, which was one of the options for Drew's third surgery, was orignally done in the 70s and 80s with a risk of 40%! Now it is considered one of the simpler heart surgeries and only has a risk of 1-2%. That is amazing!
Of course, I had a list of questions for Dr. Mainwaring, and he graciously answered each of them. Now I can see why all his patients love him. I sort of wanted to give him a hug before I left. I told him about Drew's situation and he said it was not unusual to do a Norwood and Glenn with his anatamy. He told me that Dr. Hanley actually trained Dr. Azakie when he was at UCSF (small world!). And he also said that if he really thought one hospital was much better than the other he would tell me, but that they both have great programs and great surgeons. He advised me to ask questions about statistics and use the numbers to help guide me. That was all very helpful information.
Oh, one last thing, a reporter from the Sacramento Bee was at the meeting last night and interviewed me about our story. I believe the article will be in the paper next week some time, so keep an eye out!
Thursday, April 5, 2007
Bad Mood
I'm in a mood. And its not a good one.
You would think that with the quarantine and complete house arrest we've been under there would be no possible way my kids could get sick. But you would be wrong.
It appears that Ava has a cold. I know, its not the end of the world, but I am trying my hardest to avoid group activities & to keep everyone covered in purell, and for what? Why am I avoiding the fun things that we like to do if some rogue germs are just going to get us anyway? And how am I possibly going to keep Drew from getting whatever she has? I give up!
You would think that with the quarantine and complete house arrest we've been under there would be no possible way my kids could get sick. But you would be wrong.
It appears that Ava has a cold. I know, its not the end of the world, but I am trying my hardest to avoid group activities & to keep everyone covered in purell, and for what? Why am I avoiding the fun things that we like to do if some rogue germs are just going to get us anyway? And how am I possibly going to keep Drew from getting whatever she has? I give up!
Subscribe to:
Posts (Atom)
