Today started out really good! Darein had a FFA breakfast to attend this morning and wanted me to attend it with her. I was reluctant but she was very persuasive so I ended up giving in and having a very nice time with her :) I received a call from the Shriners Hospital this morning at 9am. I was anxiously awaiting this phone call since last week and was so excited to see how long it would be before we could get Darein in. The nurse then proceeded to tell me that sometimes they can't accept patients because of their complicated health history and the fact that they have no ICU if something were to go wrong or if Darein would require more critical care following surgery. Therefore, she needed to get more medical background history so they could make a decision on whether she would be accepted or not. I went over Darein's complicated medical history with her and had to tell her that Darein had a history of sleep apnea but had not had a sleep study since she was about 7 or 8. She had a sleep study done when she was little and it showed sleep apnea so then we had her tonsils removed but left her adenoids as they didn't seem to be blocking her airway and because she has a flat nasal bridge it would make her voice nasal by removing them and we didn't want to do that if it wasn't necessary. Once her tonsils were taken out and she was recovered from the surgery we then had another sleep study done which showed that her sleep apnea had resolved. Therefore, due to the numerous other issues as well as changes in physicians another was never ordered and she seemed to be doing fine. However, I was just thinking the other day that we probably needed it checked out again and mentioned it to Darein and she agreed because she thought she might be having some problems with breathing at night. The nurse was concerned about the history of sleep apnea and the fact that she didn't have a recent test so she spoke with the nurse practitioner and they decided to talk with the anesthesiologist and see if he thought that she would be too big of a risk. The nurse suggested that we go ahead and get a sleep study done because she would need it probably for upcoming surgeries. She also stated that the same doctors that work at Shriners also work at the Children's Hospital there in St. Louis and we would just have to file our insurance if she was turned away from Shriners and then we would have co-pays and whatever insurance doesn't pay to take care. So she will be taken care of, its just a matter of which facility and our cost. My understanding is that this spine surgery will cost close to the amount it costs for a transplant so still praying that we get in to Shriners though them not having an ICU unit scares me and my husband a little so we will still have many questions if they do accept her.
Once I got off the phone I put a call into Darein's pediatricians office so that I could check and see if they would order her sleep study here in Springfield so that we didn't have to travel for it. The nurse called me back shortly and wanted me to speak with the doctor herself so that I give her the new findings and come up with a plan for her. Therefore, shortly the doctor called me to discuss things. She had already set up an appointment for Darein to get her sleep study at the hospital here in town. I then asked her if she knew what the results of Darein's KUB xray were that she had done the other day for her kidney. She said that she had sent the disc to Kansas City and was unable to pull the film up right then on her computer because it wasn't working but did read the report. Darein had had a bowel movement that morning prior to the test and didn't have the test done until after school yet there was still some showing up on the xray and she said that the report mentioned that it looked like there were pills showing up on the xray as well. I'm not sure why her body isn't digesting these but I am quite concerned about it. Unfortunately the pediatrician had no answers and just wanted to make sure that urology was following her. So now I have to find out how big of an issue there is going on with Darein's kidney, bladder or what on top of the scoliosis.
I received a call shortly thereafter from the hospital stating that they were calling to schedule Darein's sleep study. However, due to insurance issues we can't do the consult appointment and sleep study on the same day. So, Darein will go Friday for her consult appointment and for a tour of the sleep center and then she will have the sleep study Tuesday night. I called her orthopedic doctor's office to let them know what was going on so that they could be looking for the results to send to Shriners hospital when they call requesting those results.
Darein then came home from school and was upset that I had scheduled the consult on Friday as she had a field trip scheduled with her FFA that she really wanted to attend and I had forgot as I was in a hurry to get things in motion. I had to explain to her that I couldn't reschedule because if I rescheduled then I would have to reschedule the sleep study which was another couple of phone calls and would throw us further behind. She was not happy but handled it very well fortunately. I figure we won't hear anything from urology until next week but hope to hear as soon as possible so I can figure out where it falls in our new list of priorities.
I also received an e-mail from Toyota today about my truck saying that my truck that was supposed to be ready by yesterday would now not be ready until March 4th!! It is costing me quite a bit to keep this rental due to the fact that we have chosen the rental car companies insurance instead of our own. In case you don't know what's going on with my truck, I was in a wreck a couple of weeks ago and so this is pertaining to getting my truck fixed. Of course, the insurance lady is out all this week so we have no other options other than to wait and hope they will reimburse us for our expenses since this wasn't my fault to begin with.
After school Damein went to physical therapy in town and called his dad saying that he had a flat tire. He told his dad that it was totally flat and he couldn't drive to a convenience store to get it aired up. Evidently, he was just nervous as he hasn't experienced anything like this before so his dad had me take over dinner and went into town to check things out with Damein's car. Come to find out, it was pretty low but Damein hadn't been checking his tires so we are assuming it was a slow leak but not sure. My husband got it to an airhose and showed him how to air it up and they got him home safe and sound. He now has an air tank in the back of his vehicle and has been shown how to use it and so will keep an eye on this and we will see how it progresses but will get a couple of new tires and Shane is going to let him sit at the tire place while Damein's vehicle is being fixed so he understands some things that go with owning a vehicle as Damein is not learning these lessons very well :)
The expenses continue to mount and priorities continue to change on a regular basis right now. Very hard to take baby steps but are definitely a must before we can get to a result that we are comfortable with and so that we can understand the end results of things. Trying to re-adjust my attitude this evening and be happy that even though we have had set backs we are also still making steps forward. We definitely continue to learn everyday with Darein and all that is involved in caring for her. We will continue to build our character as we continue to take life by the horns and face it head on. Though going through each challenge is waring and frustrating, at the end of each challenge I know that there is hope and we are always stronger and more informed and have better character than we did before we faced the challenge and for that reason we will press forward and continue to get through life's adversity head on.
Wednesday, February 23, 2011
Monday, February 21, 2011
Research Involved With New Information
I don't have much to write about so while we wait to hear from the Shriners Hospital I thought I would talk a little bit about the research that I do when finding new information out so that I am an informed mother prior to going into an appointment.
When I found out that Darein would be referred to the Shriners hospital in St. Louis and was given 2 of the doctors that the orthopedic doctor would try to get us in to see there was much to do. As I talked about in my previous post, I took care of the medical questions involved with other physicians and got everyone on the same page so that all of the physicians that needed to know what was going on were informed. The following day I still felt as though I needed to do more, it makes the waiting easier and helps calm me so that I know what to expect and have an idea of what I need to know.
I first went to the Shriners hospital website and checked out the hospital that we would be visiting. I found out through the hospital that it doesn't look as though there is a place to stay such as the Ronald McDonald House for the parents like there is at some other children's hospitals which means I need to be prepared to take minimal family members up there for surgery for a lengthy stay and I need to have my husband and son try to attend their normal lives as much as possible while staying there with Darein following her surgery. I also found out that everyone was very happy with their care there which helped to put me at ease. I found out that there are only 80 beds there which could mean that it could take some time to get in for surgery. I also discovered that the first appointment is about a 3 - 4 hour appointment with a team of different physicians that would be a part of her care and surgery. Following the initial appointment, tests will be ordered if necessary before deciding on surgery and setting up surgery. The doctors tend to run behind so entertainment should be brought to keep you patient. We will also bring a nights worth of clothes so that if we are lucky enough to get to schedule tests the same day or next day then we are prepared.
I wasn't satisfied with the amount of information there and so I decided to Google, "how long does it take to get an appointment at the Shriners hospital in St. Louis, MO?". It was here that I discovered that both of the doctors that Darein was being referred to were excellent physicians, one of them being the President of the Scoliosis Society. I also found out that it can take up to 4 months to get in. I'm not sure if that is for an initial appointment or to schedule surgery. I did discover that the type of surgery that her orthopedic doctor thought that she would have to have is the most invasive as they have to make an extra incision to take a couple of her ribs to graft to her spine. This is also the most painful following surgery and takes approximately a year to fully heal. She most likely will have a full body brace following the surgery. The doctors are very good not to do surgery if not necessary. Most kids have to have curvatures of about 40 - 45 degrees before surgery is performed so looks like we might have enough time to wait the 4 months if necessary. There were also details of the surgery which by this time, I just mildly glanced at. I will go back and read this at a later date if necessary but for now I felt as though I had the information I needed. I think that it is very important to do your research whether you are meeting a new doctor or going to a new clinic or hospital or being scheduled for a procedure you are unfamiliar with. I'm the type of person that likes to know the worst case scenario so that I can know all of the risks and am well informed and can plan accordingly. Then, any other better news is music to my ears. I don't like being hit by a ton of bricks and unfortunately that is not always avoidable, kinda like when I went to the orthopedic doctor expecting everything to be great with sis and then to be told that her condition was dramatically worse.
I hope that this article is beneficial to those who deal with medical issues regularly or are embarking on new things that are scary for them medically. Research makes me feel confident and secure in what lies ahead. It can be scary but is very helpful in preparing you for what you need to know and knowing what questions to ask your physician. I now know some things that I have read and can carry on an intelligent conversation with the doctor when he tells me what his plan for my daughter is. I can ask questions, I know why he is doing certain things and I have a timeline and so if something comes up that isn't what I expect then I know what to ask so that I can better understand what is going on.
When I found out that Darein would be referred to the Shriners hospital in St. Louis and was given 2 of the doctors that the orthopedic doctor would try to get us in to see there was much to do. As I talked about in my previous post, I took care of the medical questions involved with other physicians and got everyone on the same page so that all of the physicians that needed to know what was going on were informed. The following day I still felt as though I needed to do more, it makes the waiting easier and helps calm me so that I know what to expect and have an idea of what I need to know.
I first went to the Shriners hospital website and checked out the hospital that we would be visiting. I found out through the hospital that it doesn't look as though there is a place to stay such as the Ronald McDonald House for the parents like there is at some other children's hospitals which means I need to be prepared to take minimal family members up there for surgery for a lengthy stay and I need to have my husband and son try to attend their normal lives as much as possible while staying there with Darein following her surgery. I also found out that everyone was very happy with their care there which helped to put me at ease. I found out that there are only 80 beds there which could mean that it could take some time to get in for surgery. I also discovered that the first appointment is about a 3 - 4 hour appointment with a team of different physicians that would be a part of her care and surgery. Following the initial appointment, tests will be ordered if necessary before deciding on surgery and setting up surgery. The doctors tend to run behind so entertainment should be brought to keep you patient. We will also bring a nights worth of clothes so that if we are lucky enough to get to schedule tests the same day or next day then we are prepared.
I wasn't satisfied with the amount of information there and so I decided to Google, "how long does it take to get an appointment at the Shriners hospital in St. Louis, MO?". It was here that I discovered that both of the doctors that Darein was being referred to were excellent physicians, one of them being the President of the Scoliosis Society. I also found out that it can take up to 4 months to get in. I'm not sure if that is for an initial appointment or to schedule surgery. I did discover that the type of surgery that her orthopedic doctor thought that she would have to have is the most invasive as they have to make an extra incision to take a couple of her ribs to graft to her spine. This is also the most painful following surgery and takes approximately a year to fully heal. She most likely will have a full body brace following the surgery. The doctors are very good not to do surgery if not necessary. Most kids have to have curvatures of about 40 - 45 degrees before surgery is performed so looks like we might have enough time to wait the 4 months if necessary. There were also details of the surgery which by this time, I just mildly glanced at. I will go back and read this at a later date if necessary but for now I felt as though I had the information I needed. I think that it is very important to do your research whether you are meeting a new doctor or going to a new clinic or hospital or being scheduled for a procedure you are unfamiliar with. I'm the type of person that likes to know the worst case scenario so that I can know all of the risks and am well informed and can plan accordingly. Then, any other better news is music to my ears. I don't like being hit by a ton of bricks and unfortunately that is not always avoidable, kinda like when I went to the orthopedic doctor expecting everything to be great with sis and then to be told that her condition was dramatically worse.
I hope that this article is beneficial to those who deal with medical issues regularly or are embarking on new things that are scary for them medically. Research makes me feel confident and secure in what lies ahead. It can be scary but is very helpful in preparing you for what you need to know and knowing what questions to ask your physician. I now know some things that I have read and can carry on an intelligent conversation with the doctor when he tells me what his plan for my daughter is. I can ask questions, I know why he is doing certain things and I have a timeline and so if something comes up that isn't what I expect then I know what to ask so that I can better understand what is going on.
Thursday, February 17, 2011
...And Now We Wait
I spent part of yesterday calling Darein's endocrinologist to find out if she needed to go back on her Florinef that he took her off of about two weeks ago as she was craving water. We were supposed to watch her and make sure that she wasn't craving salty foods as this would be a warning sign that she was losing salt. She wasn't craving salty foods but had been craving water. I was kind of glad to see her craving water as it is good for her but was concerned as this was not the norm for her. His nurse said that he wanted Darein to go back on her Florinef for now. She had her labs drawn when he first took her off of the medication and had her lab drawn two weeks later. Her first labs he had back and I guess they were high but the nurse didn't know if it was high for Darein and her congenital adrenal hyperplasia. She said that since we had the necessary labs drawn to go ahead and put her back on her medicine so that I didn't have to worry about it and then he would look at her lab work when he received it and make further decisions from there. Darein takes Florinef for her CAH. Most children with this disease are salt losers. If your body loses salt you can fall into a coma the same as a diabetic or possible lose your life. If a child is born and is not diagnosed with this condition it is very likely that they will not survive so it is extremely important to watch her and know her eating habits as well as have labs drawn regularly to check these levels. I also asked the nurse if we would need to take Darein off of her estrogen since it seemed to be increasing her height and I was concerned that it might cause her scoliosis to get worse at a rate that was faster than what was desired. She said that she would speak with him and called me back today to let me know that he said that she needs to stay on it. She is not producing the hormone that she needs and there are many ill effects to taking her off of it at this time including problems with osteoporosis and other problems with her bones. Since Antley-Bixler syndrome is a musculoskeletal disease and we are finding more and more of her bones that are fused every year for the past two years, her bone development is very important.
Yesterday, I also called to cancel her appointment with her orthodontist today as we were scheduled to get her molds and xrays so that she could get her braces put on in two weeks. Because of the uncertainty of her scoliosis surgery and possible tests that might be needed we felt as though it would be better not to get started with the braces at this time. We will postpone starting her braces and therefore the facial jaw and nose surgery until we have her scoliosis taken care of as this is now our priority.
I faxed our application to the Shriners Hospital yesterday and called and made sure that they received it. After making that phone call I then called her orthopedic doctor's nurse and let her know that I had faxed this and she stated that she would get her paperwork together yesterday and get it faxed as well as make a phone call to them yesterday. She said that the office notes won't be ready until next week but as soon as they are done she will then take care of faxing that as well. I have the xray so we can hand carry that to St. Louis when we are scheduled for Darein's appointment. I asked her what the chances were of us getting in to the hospital and she said that every child is accepted and they only take whatever your insurance pays them and no out of pocket expense for us which will be something new and wonderful to our pocketbook :)
I looked online at the Shriner Hospital website and learned a little about it. It looks as though when we receive the phone call from the hospital of an appointment, we will go for a 3 - 4 hour visit with a team of doctors. St. Louis has 80 beds and is an orthopedic specialty hospital. If for some reason they are unable to help us then they will find a surgeon outside of the hospital to help her. I have heard many good things about this hospital and have asked all the questions possible, done my research and contacted the physicians necessary to coordinate any possible care so now we sit back and wait for an appointment.
On a different note, Toyota contacted me yesterday and they have received all the parts on my truck and have disassembled it and are working on it now so hopefully it will be back to us by the first of next week. Things seems to be going fairly smooth with the insurance company so far though they are trying to get me to pay for 1/2 the bumper since it was wrecked previously by Damein but so far thankfully they aren't being pushy about it and I talked to the adjuster today and told him we were already out money with the rental car for deciding to pay for the insurance through the rental company instead of using our own and due to the fact that my husband missed out on a whole days worth of pay to help me pick the rental vehicle up and take his mom's truck back to her. He didn't say anything more about it and so I didn't think that we would be willing to split the cost of the bumper with him. So hopefully, this won't be an issue and we get this all resolved and get our vehicle back before we have to deal with Darein's medical issues.
Darein's 4-wheeler is also almost done and so hopefully we will receive it back at the first of next week as well so we can get that issue resolved prior to her hospitalization as well. Of course, she is disappointed that we had a record high snow and she didn't have her 4-wheeler to ride or to pull her on the sled and she won't be able to ride it for quite some time once she has the surgery but at least it will be ready for her when she is able and ready to ride again.
Trying to focus on the positive and Darein of course has the best temperament possible and is doing incredibly well which is a blessing in and of itself. She told me that she doesn't know why I'm so worried because it can't be anymore painful or scary than her facial surgery and I was okay with her undergoing that surgery. I explained to her that the facial surgery is very worrisome as well but that it was the biggest surgery she would encounter that we were prepared for. We have been preparing for that surgery since about the age of 2 or 3 so we are a little more comfortable with it knowing that that was the only major surgery she would have. She has had about 7 or 8 surgeries to date but none of them have been anything very major, all minor routine surgeries so this is very different for us. However, knowing that she has a great attitude keeps me from worrying so much and keeps me trying to strive for the same attitude though you do have to realize that I am still a mom so I will never fully achieve that but I can at least try and keep my fears to myself and not voice them so much :) She never ceases to amaze me with how well she adjusts to so much. Of all things, she is mad because she doesn't get her braces now and she really wanted them so this keeps me laughing at her perspective on things and makes me more and more proud of the young lady that she is turning into each and every day.
Hope everyone is enjoying the weather changes as it is starting to feel a lot like Spring!!
Yesterday, I also called to cancel her appointment with her orthodontist today as we were scheduled to get her molds and xrays so that she could get her braces put on in two weeks. Because of the uncertainty of her scoliosis surgery and possible tests that might be needed we felt as though it would be better not to get started with the braces at this time. We will postpone starting her braces and therefore the facial jaw and nose surgery until we have her scoliosis taken care of as this is now our priority.
I faxed our application to the Shriners Hospital yesterday and called and made sure that they received it. After making that phone call I then called her orthopedic doctor's nurse and let her know that I had faxed this and she stated that she would get her paperwork together yesterday and get it faxed as well as make a phone call to them yesterday. She said that the office notes won't be ready until next week but as soon as they are done she will then take care of faxing that as well. I have the xray so we can hand carry that to St. Louis when we are scheduled for Darein's appointment. I asked her what the chances were of us getting in to the hospital and she said that every child is accepted and they only take whatever your insurance pays them and no out of pocket expense for us which will be something new and wonderful to our pocketbook :)
I looked online at the Shriner Hospital website and learned a little about it. It looks as though when we receive the phone call from the hospital of an appointment, we will go for a 3 - 4 hour visit with a team of doctors. St. Louis has 80 beds and is an orthopedic specialty hospital. If for some reason they are unable to help us then they will find a surgeon outside of the hospital to help her. I have heard many good things about this hospital and have asked all the questions possible, done my research and contacted the physicians necessary to coordinate any possible care so now we sit back and wait for an appointment.
On a different note, Toyota contacted me yesterday and they have received all the parts on my truck and have disassembled it and are working on it now so hopefully it will be back to us by the first of next week. Things seems to be going fairly smooth with the insurance company so far though they are trying to get me to pay for 1/2 the bumper since it was wrecked previously by Damein but so far thankfully they aren't being pushy about it and I talked to the adjuster today and told him we were already out money with the rental car for deciding to pay for the insurance through the rental company instead of using our own and due to the fact that my husband missed out on a whole days worth of pay to help me pick the rental vehicle up and take his mom's truck back to her. He didn't say anything more about it and so I didn't think that we would be willing to split the cost of the bumper with him. So hopefully, this won't be an issue and we get this all resolved and get our vehicle back before we have to deal with Darein's medical issues.
Darein's 4-wheeler is also almost done and so hopefully we will receive it back at the first of next week as well so we can get that issue resolved prior to her hospitalization as well. Of course, she is disappointed that we had a record high snow and she didn't have her 4-wheeler to ride or to pull her on the sled and she won't be able to ride it for quite some time once she has the surgery but at least it will be ready for her when she is able and ready to ride again.
Trying to focus on the positive and Darein of course has the best temperament possible and is doing incredibly well which is a blessing in and of itself. She told me that she doesn't know why I'm so worried because it can't be anymore painful or scary than her facial surgery and I was okay with her undergoing that surgery. I explained to her that the facial surgery is very worrisome as well but that it was the biggest surgery she would encounter that we were prepared for. We have been preparing for that surgery since about the age of 2 or 3 so we are a little more comfortable with it knowing that that was the only major surgery she would have. She has had about 7 or 8 surgeries to date but none of them have been anything very major, all minor routine surgeries so this is very different for us. However, knowing that she has a great attitude keeps me from worrying so much and keeps me trying to strive for the same attitude though you do have to realize that I am still a mom so I will never fully achieve that but I can at least try and keep my fears to myself and not voice them so much :) She never ceases to amaze me with how well she adjusts to so much. Of all things, she is mad because she doesn't get her braces now and she really wanted them so this keeps me laughing at her perspective on things and makes me more and more proud of the young lady that she is turning into each and every day.
Hope everyone is enjoying the weather changes as it is starting to feel a lot like Spring!!
Tuesday, February 15, 2011
A Tough Day
Today was tough to say the least. Darein went to her orthopedic doctor here in Springfield for a check up of her scoliosis. We were expecting things to get better and not expecting a very exciting appointment. Needless to say, that didn't happen. Darein was complaining of back pain today and I promised her that I would talk to her doctor about it and see what he said but mostly, she just needed to practice good posture. We made a few jokes about it while waiting and was finally called back. To our disappointment, we were told that her upper and middle curves had gone from under 20 degrees to 32 and 35 degrees and that they would most likely get as high as 60 - 70 degrees and would cause lung problems if we got to that point. She had grown 1 inch in 4 months and her curvatures would only get worse as she continued to grow. Her surgeon has referred her on to Shriners Hospital in St. Louis now and so we received an application to fill out as well as the xray to take with us when we receive our appointment. I will fax the application tomorrow, the doctor's office will call the Shriners hospital tomorrow and let them know to be expecting our application and then they will send Darein's notes from the visit today sometime next week and then we will wait to hear for an appointment.
There are many other factors and things on our plate that we have been dealing with medically with Darein that we now will need to coordinate and regroup. I will be spending time getting all of Darein's specialists on the same page, considering all questions regarding all kinds of questions related to possible surgery and other medical issues and what needs to be rearranged and placed on the back burner, what needs to be coordinated to happen at the same time as surgery and if there are any medication issues. It seems as though the older she gets, the more complicated things get. There are so many more issues and with doctors being here in Springfield, some in Columbia, some in Kansas City and the rest in St. Louis it makes it hard to make sure that the doctors that need to be informed are informed so that we have some continuity of care going on with everyone. This definitely brings a new challenge to our life but we will figure things out and go from here.
I am going to make this post short but will probably be updating more often to keep those interested informed of the progress that is taking place.
There are many other factors and things on our plate that we have been dealing with medically with Darein that we now will need to coordinate and regroup. I will be spending time getting all of Darein's specialists on the same page, considering all questions regarding all kinds of questions related to possible surgery and other medical issues and what needs to be rearranged and placed on the back burner, what needs to be coordinated to happen at the same time as surgery and if there are any medication issues. It seems as though the older she gets, the more complicated things get. There are so many more issues and with doctors being here in Springfield, some in Columbia, some in Kansas City and the rest in St. Louis it makes it hard to make sure that the doctors that need to be informed are informed so that we have some continuity of care going on with everyone. This definitely brings a new challenge to our life but we will figure things out and go from here.
I am going to make this post short but will probably be updating more often to keep those interested informed of the progress that is taking place.
Sunday, February 13, 2011
A Puzzle With Many Pieces
Darein has been getting sick about once a week for the past month. Finally, after getting sick once again this past week I decided that she might have a kidney infection as this has caused an upset stomach for her in the past. I called her urologist here in Springfield to see if we could just come in for a UA or if she needed to be seen since it has been over a year since we have seen that doctor. We were instructed that she would need an appointment but that she could be seen that day. Therefore, we got ready and I took her in for her appointment expecting to see the doctor and to get a UA. Upon arriving and being taken back to the examining room, the nurse came in to tell us that she was new and the doctor had told her that since she cannot help Darein and had referred her to Kansas City that she did not need to see Darein at all. They did agree to go ahead and do a UA and would send it to Darein's pediatrician and to her urology surgeon in Kansas City at the Children's Hospital. Darein got a UA and we left.
We decided to meet her dad for something to eat on the other side of town on our way home. However, on our way to meet him a lady's vehicle slid on ice and hit my vehicle. We now had to take care of the accident and luckily Shane met us over there to help through the process.
Later, I received a call from the Springfield urology office stating that she had faxed the results to both places and was asking them if they wanted cultures done. I spoke with the Kansas City office the next day to see where we were at on things and was told that the initial lab looked like she probably did not have an infection and maybe just some bacteria but she did let the Springfield office know to go ahead and run cultures. The following day she called to state that the cultures came back showing that she does have an infection and so she would talk to the physician assistant later in the day to see how we wanted to treat this. I gave her some background information also stating that it had been over or about a year since Darein had seen the urologist there and that we were supposed to be working on Miralax and Benefiber daily but were having troubles remembering this daily and fitting this into our lifestyle. I also told her that he wanted her to have another KUB xray and a cystourethrogram within the year and that if he wanted to see her then maybe we could have all of these tests done in Kansas City and he could see her after the tests for the results. She thought this was a good idea and said that she would get back with me on how to proceed. She called later that day to tell me that the physician assistant was out of the office for the day and wanted to know if we could wait until the following day when the doctor would be in. I told her that was fine and that Darein was feeling better so we would continue to wait.
On Friday I received a final phone call from Kansas City stating now that the doctor looked at the culture and that it does not show that she has an infection but instead more of a yeast. She couldn't explain much to me about this other than it was nothing to be concerned about. She stated that the doctor wants to change Darein's Miralax and Benefiber routine to every other day but she needs to increase the Benefiber to three times a day. I have to call on Monday and make sure that I have that right for sure :) Anyways, she also said that he wants her to get a KUB xray this next week and get her bowels working regularly so that he knows how we are going to proceed from here.
Looks like we are back at square one, still with no answers and still trying to figure things out with her left kidney reflux as well as her spastic bladder. It has been approximately one year since we discovered the left kidney reflux and we are still no closer to any kind of treatment really being taken care of. On the upside, we did receive news this past week that Darein's bone age came back age 13. She is 15 and so this means that she still has a couple of years to continue growing. Her projected height is about 60" or 5' give or take a couple of inches which is our ideal height for her based on my height. As long as she reaches about 5', then no human growth hormone injections will be necessary which Darein definitely does not want to undergo.
Needless to say it has been an eventful week but I am trying to continue to take one day at a time and trying to make forward progress every day. Hope next week gets better and we continue to make good progress on life. Have a great week everyone! I know life can be tough but try to find one good thing that has happened that day and build and focus on that to get you through to better days. You can't do anything about the bad things that have already happened and you can't stand still in life until decisions are made that are out of your control so it is important to find what you can control and make the best of it, even if it means just catching up on some much needed rest :)
We decided to meet her dad for something to eat on the other side of town on our way home. However, on our way to meet him a lady's vehicle slid on ice and hit my vehicle. We now had to take care of the accident and luckily Shane met us over there to help through the process.
Later, I received a call from the Springfield urology office stating that she had faxed the results to both places and was asking them if they wanted cultures done. I spoke with the Kansas City office the next day to see where we were at on things and was told that the initial lab looked like she probably did not have an infection and maybe just some bacteria but she did let the Springfield office know to go ahead and run cultures. The following day she called to state that the cultures came back showing that she does have an infection and so she would talk to the physician assistant later in the day to see how we wanted to treat this. I gave her some background information also stating that it had been over or about a year since Darein had seen the urologist there and that we were supposed to be working on Miralax and Benefiber daily but were having troubles remembering this daily and fitting this into our lifestyle. I also told her that he wanted her to have another KUB xray and a cystourethrogram within the year and that if he wanted to see her then maybe we could have all of these tests done in Kansas City and he could see her after the tests for the results. She thought this was a good idea and said that she would get back with me on how to proceed. She called later that day to tell me that the physician assistant was out of the office for the day and wanted to know if we could wait until the following day when the doctor would be in. I told her that was fine and that Darein was feeling better so we would continue to wait.
On Friday I received a final phone call from Kansas City stating now that the doctor looked at the culture and that it does not show that she has an infection but instead more of a yeast. She couldn't explain much to me about this other than it was nothing to be concerned about. She stated that the doctor wants to change Darein's Miralax and Benefiber routine to every other day but she needs to increase the Benefiber to three times a day. I have to call on Monday and make sure that I have that right for sure :) Anyways, she also said that he wants her to get a KUB xray this next week and get her bowels working regularly so that he knows how we are going to proceed from here.
Looks like we are back at square one, still with no answers and still trying to figure things out with her left kidney reflux as well as her spastic bladder. It has been approximately one year since we discovered the left kidney reflux and we are still no closer to any kind of treatment really being taken care of. On the upside, we did receive news this past week that Darein's bone age came back age 13. She is 15 and so this means that she still has a couple of years to continue growing. Her projected height is about 60" or 5' give or take a couple of inches which is our ideal height for her based on my height. As long as she reaches about 5', then no human growth hormone injections will be necessary which Darein definitely does not want to undergo.
Needless to say it has been an eventful week but I am trying to continue to take one day at a time and trying to make forward progress every day. Hope next week gets better and we continue to make good progress on life. Have a great week everyone! I know life can be tough but try to find one good thing that has happened that day and build and focus on that to get you through to better days. You can't do anything about the bad things that have already happened and you can't stand still in life until decisions are made that are out of your control so it is important to find what you can control and make the best of it, even if it means just catching up on some much needed rest :)
Friday, February 4, 2011
Great Doctors Are A Precious Commodity
I am writing today because my family has been so fortunate to have extremely wonderful doctors and I think they need recognition.
Darein's geneticist discovered Darein's diagnosis of Antley-Bixler syndrome when she was 10 years old. He then proceeded to work with his wonderful assistant to write an article about Darein in the Medical Journal of Genetics so that others knew what to expect and learn from this syndrome. During the process of writing his article he then moved on to Virginia. However, he still kept in contact with me via email. We communicated for several years while he was there and he gave wonderful advice and just overall kept up with how she was doing. He then notified me that he was moving back closer to home and would be at St. Louis and would contact me. I hadn't heard from him since this summer and was starting to wonder if he would contact us. However, as promised he contacted me today via email. He had questions on Darein's development and stated that the doctor in England that did Darein's genetic mapping was interested in some follow up research. We are always very eager to help them as we know that hopefully it will benefit others and will hopefully bring us closer to knowing more about this rare syndrome. We still don't know the prognosis of someone with this syndrome and Darein has the mildest form so we are flying through things blindly and never know when she has some new ailment if it is related to her syndrome or totally independent of the syndrome. We have so much to learn and it is so nice to have doctors in your life that care about your child and your family and help you through the unknown as life moves forward. We always have so many unanswered questions and it is nice to have someone to go to that can either answer those questions for you or at least knows what concerns you have and can help work with you on finding out the answers. This doctor took Darein's case to international meetings with other physicians trying to find out the name of her syndrome for several years until he finally got an answer.
My opinion is that there are too few of these doctors around this day and age. So many physicians want to take care of whatever symptom you are having and act annoyed by all of your questions or difficult situations. We have been so extremely blessed with so many incredibly wonderful physicians and I think that it is important to write about them on occasion so that people know that they do exist and you don't have to settle for someone that doesn't appear to care for your health, especially when it comes to your children. I don't mind a doctor that doesn't have an answer for me but I want them to go that extra mile and work to get an answer for me and they do exist. It took Darein's geneticist 10 years to finally diagnose her and even then it didn't really affect how we were already caring for her but it was nice to have a name. It is also nice to have someone to talk through issues that you are facing and to find the appropriate doctors to help you a particular problem.
I do worry as she gets older that there are not as kind and caring physicians for adults as there are for children. However, as Darein grows older she will still have all the many needs for specialists and care that she does as a child and I do worry what to expect from physicians as she changes from pediatric care to adult care. Maybe, if we start expecting more from our doctors as parents then we will receive better care from them. It is very important to be on top of your healthcare and I think it helps with your doctor's attitude towards you as well as your attitude towards them. All doctors like to know that people actually care enough about their health to know what problems they are having and that they are taking good care of themselves. By the same token, as a knowledgeable person who knows your health better than anyone else you should also feel confident enough to know if a doctor isn't right about something that he is telling you based on how you are feeling. Not all doctors graduated at the top of their class and just because they have MD behind their name doesn't mean they know more than you about your health. A good doctor will always take the time to find out how you feel and what problems you are having and never make you feel rushed or talk over your head.
Just because they may not have that demeanor at first doesn't mean they aren't good either. Sometimes, they just need someone to tell them what you expect from them. Darein had a doctor recently that we had been for for quite some time and we weren't thrilled with his demeanor. He came through his office with lots of assistants, talked fast and didn't act like he knew who we were. I finally had a conversation with him as his predecessor had assured me that he was very good. I just told him that he was going to need to inform me of his thought process because if I didn't feel confident in being in the know then I would not be confident that he knew what he was doing and would need to seek a second opinion. After he understood how concerned I was, he took time out of his day to call me personally and have a discussion with me and let me know what his thought process was and that he understood if I needed to seek a second opinion. Ever since then he has been patient and kind and takes the time to understand our concerns. I think sometimes these doctors just aren't used to people taking such a personal interest in what they are trying to accomplish and they need to understand that you are working with them to accomplish the same goals.
I hope this article helps people to stand up for what they know is right, find good doctors, learn to communicate effectively with them, understand that they are just people too and it is okay to let them know that you don't agree and make them explain themselves so that you both are confident in the plan of action. Do your own research on questions of concern so that you can have an intelligent conversation with your physician and they know that you care about your health as much as they do. Hope this article helps someone and as always feel free to comment or ask questions and try to stay warm during all of this snowy weather :)
Darein's geneticist discovered Darein's diagnosis of Antley-Bixler syndrome when she was 10 years old. He then proceeded to work with his wonderful assistant to write an article about Darein in the Medical Journal of Genetics so that others knew what to expect and learn from this syndrome. During the process of writing his article he then moved on to Virginia. However, he still kept in contact with me via email. We communicated for several years while he was there and he gave wonderful advice and just overall kept up with how she was doing. He then notified me that he was moving back closer to home and would be at St. Louis and would contact me. I hadn't heard from him since this summer and was starting to wonder if he would contact us. However, as promised he contacted me today via email. He had questions on Darein's development and stated that the doctor in England that did Darein's genetic mapping was interested in some follow up research. We are always very eager to help them as we know that hopefully it will benefit others and will hopefully bring us closer to knowing more about this rare syndrome. We still don't know the prognosis of someone with this syndrome and Darein has the mildest form so we are flying through things blindly and never know when she has some new ailment if it is related to her syndrome or totally independent of the syndrome. We have so much to learn and it is so nice to have doctors in your life that care about your child and your family and help you through the unknown as life moves forward. We always have so many unanswered questions and it is nice to have someone to go to that can either answer those questions for you or at least knows what concerns you have and can help work with you on finding out the answers. This doctor took Darein's case to international meetings with other physicians trying to find out the name of her syndrome for several years until he finally got an answer.
My opinion is that there are too few of these doctors around this day and age. So many physicians want to take care of whatever symptom you are having and act annoyed by all of your questions or difficult situations. We have been so extremely blessed with so many incredibly wonderful physicians and I think that it is important to write about them on occasion so that people know that they do exist and you don't have to settle for someone that doesn't appear to care for your health, especially when it comes to your children. I don't mind a doctor that doesn't have an answer for me but I want them to go that extra mile and work to get an answer for me and they do exist. It took Darein's geneticist 10 years to finally diagnose her and even then it didn't really affect how we were already caring for her but it was nice to have a name. It is also nice to have someone to talk through issues that you are facing and to find the appropriate doctors to help you a particular problem.
I do worry as she gets older that there are not as kind and caring physicians for adults as there are for children. However, as Darein grows older she will still have all the many needs for specialists and care that she does as a child and I do worry what to expect from physicians as she changes from pediatric care to adult care. Maybe, if we start expecting more from our doctors as parents then we will receive better care from them. It is very important to be on top of your healthcare and I think it helps with your doctor's attitude towards you as well as your attitude towards them. All doctors like to know that people actually care enough about their health to know what problems they are having and that they are taking good care of themselves. By the same token, as a knowledgeable person who knows your health better than anyone else you should also feel confident enough to know if a doctor isn't right about something that he is telling you based on how you are feeling. Not all doctors graduated at the top of their class and just because they have MD behind their name doesn't mean they know more than you about your health. A good doctor will always take the time to find out how you feel and what problems you are having and never make you feel rushed or talk over your head.
Just because they may not have that demeanor at first doesn't mean they aren't good either. Sometimes, they just need someone to tell them what you expect from them. Darein had a doctor recently that we had been for for quite some time and we weren't thrilled with his demeanor. He came through his office with lots of assistants, talked fast and didn't act like he knew who we were. I finally had a conversation with him as his predecessor had assured me that he was very good. I just told him that he was going to need to inform me of his thought process because if I didn't feel confident in being in the know then I would not be confident that he knew what he was doing and would need to seek a second opinion. After he understood how concerned I was, he took time out of his day to call me personally and have a discussion with me and let me know what his thought process was and that he understood if I needed to seek a second opinion. Ever since then he has been patient and kind and takes the time to understand our concerns. I think sometimes these doctors just aren't used to people taking such a personal interest in what they are trying to accomplish and they need to understand that you are working with them to accomplish the same goals.
I hope this article helps people to stand up for what they know is right, find good doctors, learn to communicate effectively with them, understand that they are just people too and it is okay to let them know that you don't agree and make them explain themselves so that you both are confident in the plan of action. Do your own research on questions of concern so that you can have an intelligent conversation with your physician and they know that you care about your health as much as they do. Hope this article helps someone and as always feel free to comment or ask questions and try to stay warm during all of this snowy weather :)
Thursday, February 3, 2011
Blizzard 2011 & a New Addition to the Family
Well, its been an interesting few days to say the least. We had quite the blizzard here in Missouri. I think that we received about 8 - 10 inches here. The roads have been very slick for many days and the temperatures are extremely cold, I think it got down to about -8 last night and our truck wouldn't start when Shane went in to go to work. Finally about noon today it started but still didn't sound real great as it was being warmed up. The roads were still a little treacherous as we headed into town but were finally cleaned off a few hours later.
Darein has been asking for a dog for quite some time. She was having some problems with her stomach when we had dogs and we were afraid that her allergies to animals were causing some of those symptoms so we have been dog free for about a year now. She has done very well during the past year with minimal stomach problems and her kidney reflux was discovered. We have found that when she has some of her stomach problems it is due to her kidney reflux. She has done a good job with taking care of her guinea pig so we decided to let her have a puppy finally. She has been wanting a chihuahua for quite some time. I wanted an english bulldog but they are extremely expensive and Shane wanted a teacup pomeranian again but they need groomed and require quite a bit of extra care. Darein found a chihuahua that she wanted so we went to look at her today. She belonged to a cancer patient and came with lots of clothes. She doesn't bark, loves to cuddle and is really adorable so we decided to get her for sis. We are all enjoying her very much :) Her name is Daisy and she is about 7 months old.
They are calling for about an inch of snow tomorrow, 1/2 an inch on Sunday I think, more on Monday and Wednesday. Not sure when all of this weather will quit but will be glad when it does as I worry about Shane returning to work and having to drive in this weather. It also makes it hard to check on our loved ones and to get to them if they need anything. Thankfully, all are doing well right now so there are minimal concerns. I need to make Darein's appointment for her braces but am waiting until we know what the weather is going to do so we know that we can keep that appointment. We did take care of Damein's enrollment fee at MU and looks like we now wait for a packet and then set up a visit for orientation so we can schedule classes and pick out housing.
Things are moving forward with the kids and we are just basically taking the time to enjoy each other and hang out. Now, we have a new addition and thankfully I don't work so I can devote some time to helping Darein train her and will be with her all day. In the meantime, I hope everyone is staying warm in the weather that is covering most of the United States. :)
Darein has been asking for a dog for quite some time. She was having some problems with her stomach when we had dogs and we were afraid that her allergies to animals were causing some of those symptoms so we have been dog free for about a year now. She has done very well during the past year with minimal stomach problems and her kidney reflux was discovered. We have found that when she has some of her stomach problems it is due to her kidney reflux. She has done a good job with taking care of her guinea pig so we decided to let her have a puppy finally. She has been wanting a chihuahua for quite some time. I wanted an english bulldog but they are extremely expensive and Shane wanted a teacup pomeranian again but they need groomed and require quite a bit of extra care. Darein found a chihuahua that she wanted so we went to look at her today. She belonged to a cancer patient and came with lots of clothes. She doesn't bark, loves to cuddle and is really adorable so we decided to get her for sis. We are all enjoying her very much :) Her name is Daisy and she is about 7 months old.
They are calling for about an inch of snow tomorrow, 1/2 an inch on Sunday I think, more on Monday and Wednesday. Not sure when all of this weather will quit but will be glad when it does as I worry about Shane returning to work and having to drive in this weather. It also makes it hard to check on our loved ones and to get to them if they need anything. Thankfully, all are doing well right now so there are minimal concerns. I need to make Darein's appointment for her braces but am waiting until we know what the weather is going to do so we know that we can keep that appointment. We did take care of Damein's enrollment fee at MU and looks like we now wait for a packet and then set up a visit for orientation so we can schedule classes and pick out housing.
Things are moving forward with the kids and we are just basically taking the time to enjoy each other and hang out. Now, we have a new addition and thankfully I don't work so I can devote some time to helping Darein train her and will be with her all day. In the meantime, I hope everyone is staying warm in the weather that is covering most of the United States. :)
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