Do I look like a circus dog? No, I didn't think so either, but apparently most everyone in the medical field thinks I do because they make me jump thru hoop after hoop in order to get any accomplished.
Yesterday, I called Blue Cross/Blue Shield (Kai's primary ins thru his dad) to find out 2 things: 1) If they had in fact approved the surgery (since Health Alliance said as long as BC/BS pays on it, then they will pay the remainder and I would not have a co-pay for Kai), and 2) Why they had not yet paid for the nearly $8000 CT scan back in June.
The lady I spoke to there, Marci, was very nice, polite and helpful, but dang, why can't anything be not complicated? She said they had not paid on the CT scan because the hospital had not given them all they had asked for. So, I asked what they needed. She said "medical records". So I asked her to be more specific, was it the diagnosis w/ the CPT & HIPPA codes or what. She repeated she needed "medical records" Well, I don't think they need every piece of his medical record. All they need is the justification for the need for the CT scan and that justification should be no more than the diagnosis , explanation of what Loeys-Dietz is and the recommedation for treatment and follow up. Don't you agree? So, anyway, I said, "well, if you don't have what you need, then let's just conference call the hospital and find out why they aren't providing the necessary information. She agreed, we got ahold of someone at the hospital who transferred us to someone else who told us that she had mailed the docs back on July 30th, but could have faxed it had she been given a fax number. Now, why wouldn't she have been given a fax number? She would have rcvd a written request and I am sure that written request had a fax number on it. This is not 1950 anymore. And how difficult would it have been to call and ask for a fax number anyway? Ok, so she said she would fax it over.
As for the 1st question, Marci tells me that she can see the approval for the 5 day in hospital stay, but couldn't see where they had approval for the surgery itself. Again, hello! If you have a hospital stay planned, do you think it would be for sickness or do you think it would be for a surgery? I just don't understand why people can't use common sense. So, we called Karen, the insurance coordinator for Huddleston's office/hosptial and she said she was given the approval by XXX at BC/BS and had the reference number she was given. So, Marci asks the other gal if she that person that she got the ok from was in Provider Services or Member Services. It was Provide Services. Well, Marci is in Member Services and can't see the Provider Services notes on my son (the dependent of the insrd). How stupid is that? My son should only have one account and everyone who has information regarding him, should be able to enter and read notes regarding him. If the customer service rep in Member Services can't see Provider Services notes/approvals, then how are they servicing the member? I'm not a provider so I shouldn't be pressing "1" for the Provider Service line. I guess the next time I want to know information that Provider Services has, then I will just press "1" and act like I am a provider.
That was just the first phone call yesterday. The 2nd one was to Carle Clinic for a $65 bill I keep getting for Date of Service 10/26/07. Yes, 07. It is 10 months old now. I can not count how many times I have called both Carle Clinic and Health Alliance on this very issue. On the date of service, I paid my $20 co-pay. BC/BS paid Kai's dad $289, then he paid me, then I paid Carle Clinic. Then Health Alliance paid Carle Clinic $125, but not w/ a paper check. It was like an electronic payment or something, I was familiar w/ the word she used, started w/ "Cap". I have had HA call CC, they explained they had already paid it and gave them the date and reference number. CC says that they can't find the payment so they are making HA "prove" the payment and they have not given them the proof. But, CC says they just demanded that proof less than 45 days ago and most ins companies will wait to the end of the 45 days to respond and not to worry. I explained to the lady at Carle Clinic that every time I get one of these bills, I have to start making phone calls to get it resolved and not only do I not have the time to mess w/ stuff like this, I do not need the stress of it. They have been told where to look for the payment. What I didn't say, but was thinking is, how hard can it be track down a payment when you are given the DOS, account number, patient name, and a reference number? OMG! I feel sorry for the poor sole who gets the brunt of my frustration when I finally have reached the boiling point and I finally blow my top.
Today, I went to Kai's school and met w/ his teachers, counselor and the nurse. Everyone was very helpful. I will pick Kai up from school on the 3rd and we will bring all his books home so he can take them to his dads when he is discharged from the hospital. They will email him and cc me his homework from the 4th thru the 16th. Bryan will pick up Kai from Kai's dad on the 16th, then the Homebound teacher is supposed to start coming on the 17th. They gave me a form to have the doctor fill out and get back to the district special services office as soon as possible so they could get a teacher lined up. I called Huddleston's office to ask them if it was ok to fax it to them or should I fax it to Sharkey's office. Huddleston's office said Huddleston would need to fill it out but he wouldn't fill it out until the surgery. I explained I needed it before the surgery so the school could be looking for the teacher. They insisted it would not be filled out until surgery. So, I turn around and call Sharkey's office. They emphatically tell me that they can't fill that out because it has to do w/ surgery and they are not the surgeons. How difficult is it to fill out a piece of paper that has the diagnosis on it and what the "expected" duration of absence will be? RRRRRRRRRRRRRRRR!!!!
Last Sunday was our quarterly Marfan meeting and I made Bryan, Kai and Linnea go w/ me this time. I wanted everyone to meet Bryan and see Kai and Linnea again. Kai was totally unsocial and sat in the corner reading a book w/ his IPod on. I really wanted him to at least sit and listen to what people had to say. One lady had already had open heart surgery, so her family was giving us some very valuable information to think about. The few things that they said was to get an elevated toilet seat and a shower chair. In addition, might want to elevate whatever recliner/sofa you sit in regularly because it is hard to get up out of a chair. She said her breastbone hurt for 4-6 weeks and 7 yrs later it feels like the wires are getting closer to the surface. Man, that is gonna suck! Another lady in the group has a daughter that just had spinal fusion surgery and said that we could probably use her shower seat, they would probably be done w/ it by the time we needed it.
Why do I write about the hoops I have to jump thru on a daily basis with this whole situation? There are a couple of reasons. I happen to be lucky enough to be medically savy and have had to learn over the years how to handle medical/insurance issues and I want all of you to be able to take your own medical issues into your hands and be the driver on your health bus. I also hope that by telling you everything we have to go thru, you will understand when I am stressed out and may not be pleasant to be around or may not answer your emails or phone calls. It would be nice if someone who reads this would be in a position to make a difference in the lives of patients who are dealing w/ medical isssues. I have often wondered if God gave me this knowledge in order to become a patient advocate, but I don't think I could afford to take that kind of job and although it certainly would be challenging, it's not the intellectual challenge my mind craves. I am happy to help where I can and give advice when I can and I guess that will have to be enough for now. Maybe when I retire, that can be my job.
The only other big news is that I have found another place to stay, Haven House. The only draw back is that it is 15-20 minutes west of the hospital. They do provide shuttles to/from the hospital at 7:30, 12:00, and 4:30, provide breakfast at 7:00 and dinner at 5:00. And they said if you can't be there for dinner, then they would save it for you. They have wifi access, a computer room, and a gymnasium. They staff social workers to help you deal with stress (think we'll need that :-) There is no waiting list, we are in, and it is only going to cost $30-$35/night!!!! I need to call the hospital and find out if we drive there and park, if we will get our parking validated. The parking fees are horendous!!!!!!
I know I should post here more often so each blog would not be a book, but I can only bring myself to do this so often. I just feel like I need to veg to destress. I tend to get worked up when I am writing these blogs. It brings all the emotions back to the surface.
Kai goes to his dads this weekend and Bryan and Linnea are going to Bryan's dad's this weekend. I get the house all to myself from Friday night thru Sunday night. I am so excited. I am going to Evelyn's birthday party Saturday night. I am hoping that I will get a little cleaning done this weekend as well. We all have Monday off and I am taking Tuesday and Wednesday off as well to have time to wrap things up before we have to leave on Thursday.
Ok, time to go to bed now. As Paul Harvey says, "Good Day!"
Wednesday, August 27, 2008
Wednesday, August 13, 2008
Tidbits
Yesterday when I got home from work, I received a letter from Kai's surgeon's secretary w/ some information regarding the surgery and the stay. They had Kai set to be at the Heart Station (where he gets his pre-op echocardiogram) at 10 am on Thursday Sept 4th, then at Same Day Surgery at 1 pm to meet w/ the anesthesiologist and Dr Huddleston. I called to get the first appointment moved back an hour to give us some wiggle room in the trip down there. You never know what will happen at that time of day. So, after some coaxing, I managed to get the lady to agree to move the first appointment to 11 am. I did also find out that Kai won't be admitted the night before the surgery, he would come to the hotel w/ us. I don't know what time surgery is yet. She said surgery would be calling me to give me all that info
I also sent emails to my surgeon, Dr Moon, and Kai's cardiologist, Dr Sharkey w/ several more questions. This morning, I received a reply from Dr Moon. I forgot to forward the email w/ his responses to my home address so I will put what I can remember under my questions.
To Dr Moon:
1) My son's pediatrician had ordered a blood test to see if his iron stores were high enough before his surgery. His were low so they put him on some Iron Polysaccaride to build them up. I called my Primary Care Physician and she said to check w/ you to see what all blood work you would need. I am assuming you do the "pre-op" blood work the day before surgery down there, but is there anything I need to have up here ahead of time like checking for the Iron Stores?
A: Unless you have been severely anemic in the past, there is no need to worry about that.
2) Do you or the anesthesiologist have a list of meds that are usually given during this type of surgery? If so, could you please provide that to me?
A: Meds vary for each person but I could as the anesthesiologist and he could give me that info when we meet him for my pre-op.
3) Does the operating room have the capability of video taping the surgery? If so, can you tape it? I would like to see what was done to me. I know, some people are squeemish and others have no desire to see, but that kind of stuff does not bother me and frankly, I would like to see inside me :-) If it can't be video taped, will they allow any photos to be taken? I had some taken during previous surgeries and had other doctors tell me that if I would have let them know ahead of time, they could have either taped it or taken some photos. So, I figured it can't hurt to ask.
A: Yes, they can video tape it, but it is a big hassle so they don't. If I want photos, I can ask the anesthesiologist and he can take them for me.
4) How are the ends of the wires that hold the breastbone together protected so they don't poke?
A: They bend them down.
5) Will I have any post-op checkups w/ you or are they all w/ Dr Braverman? If I have some w/ you, can we coordinate them so Kai will see Huddleston and I will see you on the same days so we are not making additional trips down there?
A: My follow up w/ him is really just to see the incision, so if I am doing well, I can go to my primary care physician and have her look at it. But if I need to come down for Kai's anyway, then he would coordinate the appointments
6) I have some papers that need to be filled out for work concerning the time I will be gone. Should I fax them to your office or to Braverman's?
A: I should fax them to Moons office
7) What about a handicap placard? Will I qualify for one now?
A: He says he certainly hopes not. (and from that, I gather he won't recommend one for me, which I would really like to have more for orthopedically, but just walking into work, my heart rate exceed 100/minute and I work up a sweat.)
I have not heard back from Dr Sharkey yet, but she said she would not email answers back to me, she would call me, so I imagine I will hear from her tomorrow or Friday. I asked her about the referral to the Ronald McDonald house so we could try to save some money on hotel bills. I sent her the list of PE activities for Kai this year and asked her to indicated which ones were ok, which were not allowed, and which were ok w/ certain modifications and to let me know what adaptations she thinks will be necessary when he gets back to school. I also asked her about the feeling I got from Dr Huddleston during my phone conversation w/ him and asked her if I caught him on a bad day or if he was always that way. I just felt like he was annoyed w/ me. And lastly, I asked her if she thought it would take 10 weeks to get the kids DNA tests back since the lab was supposed to send my results w/ the kids' samples, so they wouldn't have to search for the mutation, they would know exactly where to look for it. I look forward to hearing from her.
I went to lunch w/ Michele Jensen today and her daughter, Brianna, just had spinal surgery at St Louis Children's Hospital on July 23rd, so she was able to tell me everything about how to save money and what was available. Everyone please keep your fingers crossed and keep praying that we are able to get into the Ronald McDonald house.
It's amazing, since I have received dates and most questions have been answered, I really do feel like I am almost back to my old self. I was really productive Monday and Tuesday and work and it felt good. Today it felt like I was just spinning my wheels, but nothing to do w/ the surgeries, just one of those days.
Last weekend, I had a lot of energy for some reason (probably something like when pregnant women do their "nesting" right before they are due, there's a lot to get done on my home front before these surgeries) and I really got a lot done. We are getting ready for a garage sale and started digging all kinds of crap out of the attic and got rid of a lot of it (or at least going to sell it). If it doesn't get sold at the garage sale, then I might try to sell some of it on e-bay and what I don't sell on e-bay, is getting donated. Bryan doesn't want any of it to come back in the house. And, if you want to get down to it, neither do I really.
Ok, that is all I can think of right now. I'll let you know when I find out anything else or I decide to let the world into my very busy mind.
Later!
I also sent emails to my surgeon, Dr Moon, and Kai's cardiologist, Dr Sharkey w/ several more questions. This morning, I received a reply from Dr Moon. I forgot to forward the email w/ his responses to my home address so I will put what I can remember under my questions.
To Dr Moon:
1) My son's pediatrician had ordered a blood test to see if his iron stores were high enough before his surgery. His were low so they put him on some Iron Polysaccaride to build them up. I called my Primary Care Physician and she said to check w/ you to see what all blood work you would need. I am assuming you do the "pre-op" blood work the day before surgery down there, but is there anything I need to have up here ahead of time like checking for the Iron Stores?
A: Unless you have been severely anemic in the past, there is no need to worry about that.
2) Do you or the anesthesiologist have a list of meds that are usually given during this type of surgery? If so, could you please provide that to me?
A: Meds vary for each person but I could as the anesthesiologist and he could give me that info when we meet him for my pre-op.
3) Does the operating room have the capability of video taping the surgery? If so, can you tape it? I would like to see what was done to me. I know, some people are squeemish and others have no desire to see, but that kind of stuff does not bother me and frankly, I would like to see inside me :-) If it can't be video taped, will they allow any photos to be taken? I had some taken during previous surgeries and had other doctors tell me that if I would have let them know ahead of time, they could have either taped it or taken some photos. So, I figured it can't hurt to ask.
A: Yes, they can video tape it, but it is a big hassle so they don't. If I want photos, I can ask the anesthesiologist and he can take them for me.
4) How are the ends of the wires that hold the breastbone together protected so they don't poke?
A: They bend them down.
5) Will I have any post-op checkups w/ you or are they all w/ Dr Braverman? If I have some w/ you, can we coordinate them so Kai will see Huddleston and I will see you on the same days so we are not making additional trips down there?
A: My follow up w/ him is really just to see the incision, so if I am doing well, I can go to my primary care physician and have her look at it. But if I need to come down for Kai's anyway, then he would coordinate the appointments
6) I have some papers that need to be filled out for work concerning the time I will be gone. Should I fax them to your office or to Braverman's?
A: I should fax them to Moons office
7) What about a handicap placard? Will I qualify for one now?
A: He says he certainly hopes not. (and from that, I gather he won't recommend one for me, which I would really like to have more for orthopedically, but just walking into work, my heart rate exceed 100/minute and I work up a sweat.)
I have not heard back from Dr Sharkey yet, but she said she would not email answers back to me, she would call me, so I imagine I will hear from her tomorrow or Friday. I asked her about the referral to the Ronald McDonald house so we could try to save some money on hotel bills. I sent her the list of PE activities for Kai this year and asked her to indicated which ones were ok, which were not allowed, and which were ok w/ certain modifications and to let me know what adaptations she thinks will be necessary when he gets back to school. I also asked her about the feeling I got from Dr Huddleston during my phone conversation w/ him and asked her if I caught him on a bad day or if he was always that way. I just felt like he was annoyed w/ me. And lastly, I asked her if she thought it would take 10 weeks to get the kids DNA tests back since the lab was supposed to send my results w/ the kids' samples, so they wouldn't have to search for the mutation, they would know exactly where to look for it. I look forward to hearing from her.
I went to lunch w/ Michele Jensen today and her daughter, Brianna, just had spinal surgery at St Louis Children's Hospital on July 23rd, so she was able to tell me everything about how to save money and what was available. Everyone please keep your fingers crossed and keep praying that we are able to get into the Ronald McDonald house.
It's amazing, since I have received dates and most questions have been answered, I really do feel like I am almost back to my old self. I was really productive Monday and Tuesday and work and it felt good. Today it felt like I was just spinning my wheels, but nothing to do w/ the surgeries, just one of those days.
Last weekend, I had a lot of energy for some reason (probably something like when pregnant women do their "nesting" right before they are due, there's a lot to get done on my home front before these surgeries) and I really got a lot done. We are getting ready for a garage sale and started digging all kinds of crap out of the attic and got rid of a lot of it (or at least going to sell it). If it doesn't get sold at the garage sale, then I might try to sell some of it on e-bay and what I don't sell on e-bay, is getting donated. Bryan doesn't want any of it to come back in the house. And, if you want to get down to it, neither do I really.
Ok, that is all I can think of right now. I'll let you know when I find out anything else or I decide to let the world into my very busy mind.
Later!
Thursday, August 7, 2008
FINALLY! We have dates
First thing this morning, Linda from Dr Moon's office called me and said she had spoken to Dr Huddleston's office and figured it out. Kai will have his Pre-op down there on Thursday Sept 4th and his surgery would be Friday Sept 5th. My Pre-op down there will be Monday Sept 8th and my surgery will be Tuesday Sept 9th. I am supposed to receive another phone call from Huddleston's office probably tomorrow w/ more details and then from some other departments about specific instructions for our pre-op and surgeries. Linda said she does not take care of getting the authorizations. There is another lady in the office that does that and she is not in this week, so she would probably call me next week w/ some questions or information.
So, today has gone pretty well. I was much more relaxed and able to concentrate and get some work done (with the exception of having some internal plumbing problems more than likely caused by all this stress), so I finished my work up at home this afternoon. It was nice to get something accomplished today.
I tried to call Wemlinger's office to see if they got what they needed from Braverman's office, but couldn't get thru, so I decided to call Health Alliance myself and find out if they had what they needed. Kathy from there was very nice. She told me what she needed and asked questions about Loeys-Dietz since she had never heard of it. She was very shocked to learn that including the kids and I there were only 186 people worldwide with it. Braverman's office was already closed, so I will call them tomorrow to make sure they fax the needed info to Health Alliance. Kathy said once she receives it, she sends it to the medical review board and they take care of the approval/denial and there shouldn't be anything else needed. I gave her my surgery dates.
I feel so much better now mentally, but I will not totally relax until I know all red tape has been taken care of. I also still need to call Social Services at the Children's Hospital to get a referral from a Social Worker for the Ronald McDonald house for us to stay in during Kai's hospital stay. I think I will also call the hotel we stayed at when we were down there in April and see if they will give us the same rate as the Parkway (which is right there on the hospital campus). After all, I am one of their "Rewards" customers. I am not holding my breath, but it can't hurt to ask. We really liked that hotel and it is close, so what the heck! Worth a try. All they can say is no, then we can try the Parkway. It is still $75 a night, but that's cheaper than anything else.
Pegram's office called today and said Kai's Iron stores are a little low, so they want him to take 150mg of Iron polysaccaride and 1000mg of Vitamin C together to help build up his iron stores for surgery, so I guess we will get that tomorrow. I think I will call Wemlinger's office tomorrow and find out if they plan to do that blood test on me. I need to have my thyroid checked this month anyway since they found a "nodule" on it (already had a biopsy and it was benign). Yeah, I know, what is NOT wrong w/ me?!?!?!? It really sucks, but there are a lot more things that could be a lot worse, so I am thankful for that.
So, today has gone pretty well. I was much more relaxed and able to concentrate and get some work done (with the exception of having some internal plumbing problems more than likely caused by all this stress), so I finished my work up at home this afternoon. It was nice to get something accomplished today.
I tried to call Wemlinger's office to see if they got what they needed from Braverman's office, but couldn't get thru, so I decided to call Health Alliance myself and find out if they had what they needed. Kathy from there was very nice. She told me what she needed and asked questions about Loeys-Dietz since she had never heard of it. She was very shocked to learn that including the kids and I there were only 186 people worldwide with it. Braverman's office was already closed, so I will call them tomorrow to make sure they fax the needed info to Health Alliance. Kathy said once she receives it, she sends it to the medical review board and they take care of the approval/denial and there shouldn't be anything else needed. I gave her my surgery dates.
I feel so much better now mentally, but I will not totally relax until I know all red tape has been taken care of. I also still need to call Social Services at the Children's Hospital to get a referral from a Social Worker for the Ronald McDonald house for us to stay in during Kai's hospital stay. I think I will also call the hotel we stayed at when we were down there in April and see if they will give us the same rate as the Parkway (which is right there on the hospital campus). After all, I am one of their "Rewards" customers. I am not holding my breath, but it can't hurt to ask. We really liked that hotel and it is close, so what the heck! Worth a try. All they can say is no, then we can try the Parkway. It is still $75 a night, but that's cheaper than anything else.
Pegram's office called today and said Kai's Iron stores are a little low, so they want him to take 150mg of Iron polysaccaride and 1000mg of Vitamin C together to help build up his iron stores for surgery, so I guess we will get that tomorrow. I think I will call Wemlinger's office tomorrow and find out if they plan to do that blood test on me. I need to have my thyroid checked this month anyway since they found a "nodule" on it (already had a biopsy and it was benign). Yeah, I know, what is NOT wrong w/ me?!?!?!? It really sucks, but there are a lot more things that could be a lot worse, so I am thankful for that.
Wednesday, August 6, 2008
Why can't people just do what they say they are going to do?
By the end of the workday on Wednesday, Health Alliance had Kai's authorization request in their system pended for review. Mine was not there. Then Tuesday, Bonny from Health Alliance called me to get a few more details and said she was approving it right then for 6 visits and said all Huddleston's office needed to do was to call her w/ details regarding the surgery. Bonny was fantastic! Very concerned for our well being. I asked her about my referral. She said she only did the kids, but would ask that a case manager be assigned to me and told me who she was going to ask to be my case manager and would call her herself. I really felt relieved after talking to her and very happy w/ Pegram's office for being so willing to do what is needed w/out any delay or hesitation.
So, at 4:30 on Tuesday, I called Huddleston's office and told them about my conversation w/ Health Alliance. Debbie confirmed that they had the approval already and it had Bonny's name on it. I asked Debbie to please call Bonny and give her the info that is needed to get the surgery approved. Debbie also said the only thing they were waiting on was hearing from my surgeon, Dr Moon's, office for his available dates. So, I asked her what the first available Tuesday would be for Huddleston. She said it would be Sept 2nd because he was booked the week of Aug 11th, out the week of the 18th, already had a big case for the 26th. So, she was going to see if Moon would be available for Sept 5th. By the time I got off the phone w/ Debbie, it was too late to call Dr Moon. I was somewhat relieved that by Wednesday, I should have a date
Today, I thought I would give everyone most of the day to get things arranged and to get me called. While I was at lunch. my PCP office, Dr Wemlinger, nurse Suz called and said Kathy from Health Alliance had called her back and needed more information about the diagnosis and recommendation and Suz needed the phone number for Braverman. Hello!!!!!!! Don't they have the internet? Don't they have a physician network w/ those numbers? I got his number from the internet. I gave it to her. I checked the Health Alliance website and do see that my referral request is pended for review.
So, shortly about 3:45 today, I called Moon's office and spoke to Linda. Linda tells me that Huddleston's office has not contacted her, but Dr Moon had left her a note that said I would be calling to set up surgery dates and that it needed to be coordinated w/ Huddleston's office and that we wanted the surgeries on the same day. I told her that we did not want them on the same day, but Kai's first, then mine either 3 or 4 days later. I told her that Huddleston's office had told me that the first Tuesday they had open was Sept 2nd and asked if Moon was available on Sept 5th. She said No, he is actually out of town that day which she said is unusual because he is rarely ever gone. Figures! Just my luck. But Linda was very empathetic and said she would call Huddleston's office, but she wanted to talk to Dr Moon and he was gone for today. She would talk to him tomorrow, then call Huddleston's office. I explained to her that it wouldn't have to be Kai on a Tuesday and me on a Friday, Kai could be done on a Friday, and me on the next Tuesday.
After that, I just couldn't take it anymore. I can't concentrate on my work at work. I need to get things done. I have only been in this job for 9 months and this was not in my plan. I was going to go into this job and just kick ass and blow them away. I wanted to be the best new person they had ever hired. And now, this crap happens and I am finding it so hard to do what I am supposed to do. I feel like I am letting down my project teams, my testing teams, my boss, my department. I am having a really hard time getting past that. I just broke down, right there at work. The other major thing I never wanted to happen. I left a few minutes early and cried all the way home, almost to the point I couldn't catch my breath. When I got home, I had cramps, a headache was starting, all I wanted to do was go to bed. So, I did and stayed there until 8:00. No, I don't feel too much better, still crying on & off.
Maybe tomorrow will be better. Maybe tomorrow I will get dates and approvals. Good news is, Kai is doing great. The sad thing is it seems like he is watching out for me, reassuring me that he loves me. Bryan has been absolutely great in all of this. I asked him how he could stand being around someone like me who is so emotional all of the time. He said he finds the light at the end of the tunnel and focuses on it. I asked him what the light was now. He said the quality of life after the surgery. I am not so sure that my quality of life after the surgery is going to be any better and may not be as good as it is now. I don't count on anything anymore. I just keep praying that God will allow me to sleep solidly, awake refreshed, help me have a productive, worry free day, and hopefully get me some surgery dates I can live with.
Please continue to pray not only for our physical well-being, but for our mental well-being as well. I need it so bad. I am very lucky to have so many caring people in my life and I am so grateful. So, thank you to all who give me support every day. I truly appreciate it.
So, at 4:30 on Tuesday, I called Huddleston's office and told them about my conversation w/ Health Alliance. Debbie confirmed that they had the approval already and it had Bonny's name on it. I asked Debbie to please call Bonny and give her the info that is needed to get the surgery approved. Debbie also said the only thing they were waiting on was hearing from my surgeon, Dr Moon's, office for his available dates. So, I asked her what the first available Tuesday would be for Huddleston. She said it would be Sept 2nd because he was booked the week of Aug 11th, out the week of the 18th, already had a big case for the 26th. So, she was going to see if Moon would be available for Sept 5th. By the time I got off the phone w/ Debbie, it was too late to call Dr Moon. I was somewhat relieved that by Wednesday, I should have a date
Today, I thought I would give everyone most of the day to get things arranged and to get me called. While I was at lunch. my PCP office, Dr Wemlinger, nurse Suz called and said Kathy from Health Alliance had called her back and needed more information about the diagnosis and recommendation and Suz needed the phone number for Braverman. Hello!!!!!!! Don't they have the internet? Don't they have a physician network w/ those numbers? I got his number from the internet. I gave it to her. I checked the Health Alliance website and do see that my referral request is pended for review.
So, shortly about 3:45 today, I called Moon's office and spoke to Linda. Linda tells me that Huddleston's office has not contacted her, but Dr Moon had left her a note that said I would be calling to set up surgery dates and that it needed to be coordinated w/ Huddleston's office and that we wanted the surgeries on the same day. I told her that we did not want them on the same day, but Kai's first, then mine either 3 or 4 days later. I told her that Huddleston's office had told me that the first Tuesday they had open was Sept 2nd and asked if Moon was available on Sept 5th. She said No, he is actually out of town that day which she said is unusual because he is rarely ever gone. Figures! Just my luck. But Linda was very empathetic and said she would call Huddleston's office, but she wanted to talk to Dr Moon and he was gone for today. She would talk to him tomorrow, then call Huddleston's office. I explained to her that it wouldn't have to be Kai on a Tuesday and me on a Friday, Kai could be done on a Friday, and me on the next Tuesday.
After that, I just couldn't take it anymore. I can't concentrate on my work at work. I need to get things done. I have only been in this job for 9 months and this was not in my plan. I was going to go into this job and just kick ass and blow them away. I wanted to be the best new person they had ever hired. And now, this crap happens and I am finding it so hard to do what I am supposed to do. I feel like I am letting down my project teams, my testing teams, my boss, my department. I am having a really hard time getting past that. I just broke down, right there at work. The other major thing I never wanted to happen. I left a few minutes early and cried all the way home, almost to the point I couldn't catch my breath. When I got home, I had cramps, a headache was starting, all I wanted to do was go to bed. So, I did and stayed there until 8:00. No, I don't feel too much better, still crying on & off.
Maybe tomorrow will be better. Maybe tomorrow I will get dates and approvals. Good news is, Kai is doing great. The sad thing is it seems like he is watching out for me, reassuring me that he loves me. Bryan has been absolutely great in all of this. I asked him how he could stand being around someone like me who is so emotional all of the time. He said he finds the light at the end of the tunnel and focuses on it. I asked him what the light was now. He said the quality of life after the surgery. I am not so sure that my quality of life after the surgery is going to be any better and may not be as good as it is now. I don't count on anything anymore. I just keep praying that God will allow me to sleep solidly, awake refreshed, help me have a productive, worry free day, and hopefully get me some surgery dates I can live with.
Please continue to pray not only for our physical well-being, but for our mental well-being as well. I need it so bad. I am very lucky to have so many caring people in my life and I am so grateful. So, thank you to all who give me support every day. I truly appreciate it.
Monday, August 4, 2008
Still waiting
Well, today I called Huddleston's office to see if I could get a date for surgery. Debbie informed me that they didn't even have a referral from Health Alliance to see Kai yet. Wish they would have told me that last week. That could have been taken care of last week. So, I called Kai's primary care physician and they submitted that today. I am not for sure, but I think Huddleston's office then has to submit the request for authorization for the surgery, or maybe that will be done in the referral. I am not really sure. So, then I turned around and called Moon's office for my surgery and then my primary care physician to get my referral.
So, still no dates. Who knows when I will have them. If I don't post anything new, then Idon't have anything new. Sorry.
So, still no dates. Who knows when I will have them. If I don't post anything new, then Idon't have anything new. Sorry.
Sunday, August 3, 2008
Questions answered
Ok, I sent the emai to Dr Dietz on 7/29/08 at 11:37 pm. On July 31st around 8:00 am, I was crying again and asked God to give me some type of sign to tell me what I was supposed to . It couldn't have been about 15 minutes later and I got an email response from Dr Hal Dietz himself! I was in as much shock about that as I was getting told about our test results. I couldn't believe he actually answered me. Basically what he said was that Loeys-Dietz is a lot like Marfan's in that it is not just one mutation that causes the syndrome, there are many mutations that cause it. In Marfan's they have found about 50+ so far. Since there are only 186 people (including Kai, Linnea, and me) in the world w/ Loeys-Dietz, this is the first time they have seen the mutation that we have. It is not to say that they won't see it in others. Apparently, jellyfish have the same mutation in the same spot too. Anyway, he said he could understand my wanting to wait to 5cm to have the surgery, but he said since this type of surgery is so safe, waiting would not be the choice that he would make for himself if he was in the same situation. I really felt like that was the sign God was giving me. To me, it just really seemed evident. When I got done reading that email and had sat back and thought about it, I decided that I would go ahead and have this done along w/ Kai and just get it out of the way. A peace came over me and it truly felt like a burden had been lifted. Again, I think that was God at work. Oh, and Dr Dietz said he would be interested in studying our family's cells, so I am REALLY excited about that. Even if it takes 10 years to find out anything significant, the kids would really just be starting their adult life. So, everyone pray that Dr Dietz does in fact decide to study our cells and can discover something that will help not only our family, but others who may be afflicted.
After all that, I called Dr Huddleston's office back again. Once again, he was in surgery, but Debbie said she would have him call me when he got out of surgery. So, I was not expecting a phone call until the afternoon. About 11:00, he calls me. I told him I assumed he had spoken to Dr Sharkey about Kai, but he said no, all he had was a message from her, but he hadn't called her back yet. Ok, now, that kind of pissed me off. It had been at least 4 days if not more. Why hadn't he called her back? Does he take this approach w/ all the patients? I just didn't get a good first impression. He certainly was nothing like my surgeon. In fact, I kind of felt like he thought I was a pain in the ass for calling everyday. I know he is busy, but I guess I kind of felt like a 20 minute conversation w/ a confused parent of a child who he will be operating on wouldn't be that big of deal and in fact, would stop the parent from calling if he'd just address the questions. Anyway, I got all my questions answered from him.
I don't have a date yet, hopefully tomorrow or Tuesday I will have a date. But, here's how we see it working. We are going to both get this done close together and get it over with. We would be at St Louis Childrens Hospital on a Monday. Kai would have an echo, chest xray, and blood work, then see Dr Huddleston for our consultation. Tuesday morning, he would have his surgery which would last about 5 hours (possibly a couple more if he is able to fix his breastbone at the same time). He would be in the ICU and that night, he would get his breathing tube out. Sometime on Wednesday, they would try to get him up and out of bed. Thursday, hopefully in the morning, he would move from ICU to a regular room. Then (if timing works out) I would have my pre-op in the afternoon which consists of a heart catheterization and blood work. I think I have to stay still for several hours after that, so I would not be able to see Kai again unless, I could go later in the evening or something. Friday morning, I would have my surgery, again, lasts about 5 hours. I am hoping Kai would be well enough to be able to be wheeled over in a wheel chair to come see me. I would get my breathing tube out that night. Saturday, would get out of bed. Sunday I would move from ICU to a regular room. Kai might be able to go home on Sunday. If not then, then probably at least by Tuesday. I am hoping that when he is discharged, John & his parents will be able to take him back to John's house and take care of him until the next weekend. I would be discharged somewhere between Wednesday and Friday. Sometime that weekend, Bryan would meet John or his parents w/ Kai in Ogden and bring him back home. Bryan will have been off work for 2 weeks by now. So, I am not sure if he will be able to take another week off or not. If not, then my mom said she would stay.
I am supposed to meet w/ Kai's school counselor, school nurse, and PE teacher the week of Aug 11th to talk about adaptations that Kai will need and the homebound teacher coming over.
Kai came home today after being out in Vegas at his grandparent's house. He is now 6'1" !!!! He has grown an inch and a quarter. I couldn't believe it. After we got home and had supper, I told him. He took it pretty well. Cried a little bit, but not nearly as bad as I did, so I was very proud of him. He hasn't had time to think of too many questions yet. I tried to be as explanatory as I could when I told him. So, he did pretty well, I think. He was more upset when he was talking about wanting to be a pilot in the Air Force and me telling him that w/ his heart condition and having had open heart surgery, he would never get into the Air Force. So, I am wondering if he will have more questions. I did tell him that I have a counseling appt set up for him on Tuesday.
So, that's where we are right now. Just waiting on a date. Dr Braverman is supposed to call me tomorrow morning and I can ask some of my remaining questions. When I have anymore news, I will post it. Keep checking back.
After all that, I called Dr Huddleston's office back again. Once again, he was in surgery, but Debbie said she would have him call me when he got out of surgery. So, I was not expecting a phone call until the afternoon. About 11:00, he calls me. I told him I assumed he had spoken to Dr Sharkey about Kai, but he said no, all he had was a message from her, but he hadn't called her back yet. Ok, now, that kind of pissed me off. It had been at least 4 days if not more. Why hadn't he called her back? Does he take this approach w/ all the patients? I just didn't get a good first impression. He certainly was nothing like my surgeon. In fact, I kind of felt like he thought I was a pain in the ass for calling everyday. I know he is busy, but I guess I kind of felt like a 20 minute conversation w/ a confused parent of a child who he will be operating on wouldn't be that big of deal and in fact, would stop the parent from calling if he'd just address the questions. Anyway, I got all my questions answered from him.
I don't have a date yet, hopefully tomorrow or Tuesday I will have a date. But, here's how we see it working. We are going to both get this done close together and get it over with. We would be at St Louis Childrens Hospital on a Monday. Kai would have an echo, chest xray, and blood work, then see Dr Huddleston for our consultation. Tuesday morning, he would have his surgery which would last about 5 hours (possibly a couple more if he is able to fix his breastbone at the same time). He would be in the ICU and that night, he would get his breathing tube out. Sometime on Wednesday, they would try to get him up and out of bed. Thursday, hopefully in the morning, he would move from ICU to a regular room. Then (if timing works out) I would have my pre-op in the afternoon which consists of a heart catheterization and blood work. I think I have to stay still for several hours after that, so I would not be able to see Kai again unless, I could go later in the evening or something. Friday morning, I would have my surgery, again, lasts about 5 hours. I am hoping Kai would be well enough to be able to be wheeled over in a wheel chair to come see me. I would get my breathing tube out that night. Saturday, would get out of bed. Sunday I would move from ICU to a regular room. Kai might be able to go home on Sunday. If not then, then probably at least by Tuesday. I am hoping that when he is discharged, John & his parents will be able to take him back to John's house and take care of him until the next weekend. I would be discharged somewhere between Wednesday and Friday. Sometime that weekend, Bryan would meet John or his parents w/ Kai in Ogden and bring him back home. Bryan will have been off work for 2 weeks by now. So, I am not sure if he will be able to take another week off or not. If not, then my mom said she would stay.
I am supposed to meet w/ Kai's school counselor, school nurse, and PE teacher the week of Aug 11th to talk about adaptations that Kai will need and the homebound teacher coming over.
Kai came home today after being out in Vegas at his grandparent's house. He is now 6'1" !!!! He has grown an inch and a quarter. I couldn't believe it. After we got home and had supper, I told him. He took it pretty well. Cried a little bit, but not nearly as bad as I did, so I was very proud of him. He hasn't had time to think of too many questions yet. I tried to be as explanatory as I could when I told him. So, he did pretty well, I think. He was more upset when he was talking about wanting to be a pilot in the Air Force and me telling him that w/ his heart condition and having had open heart surgery, he would never get into the Air Force. So, I am wondering if he will have more questions. I did tell him that I have a counseling appt set up for him on Tuesday.
So, that's where we are right now. Just waiting on a date. Dr Braverman is supposed to call me tomorrow morning and I can ask some of my remaining questions. When I have anymore news, I will post it. Keep checking back.
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