UGH!!! Many months back Tim and I went round and round with our insurance company. They kept denying Casey's nursing care. They said that she did not need it (WHAT!!?). We had to collect very detailed letters from ALL of Casey's doctors and we had to write letters ourselves as well. The issue went back and forth for over a month. Everyday we spent HOURS on the phone trying to get things straightened out. We were told that most likely once we went through all of that and finally had it all straight that we would not have to do it again. Well, this morning Casey's nursing service called to tell me that once again they are denying her care.
Here's the good news; since we have Medicaid for Casey now things like nursing (or whatever) that our private insurance denies can be covered my Medicaid. Last time we went through this we did not have a plan B, at least this time we do. We still have to get it resolved. I just don't feel quite as stressed this round.
The timing could not have been funnier. We had Casey's case manager her yesterday afternoon going over all the admin stuff. While he was doing the mountain of paperwork he made a comment that I keep playing in my head today. He said Casey has more stuff going on, and requires more interaction and care than a lot of his other patients that have a lot MORE hours. After he said that he went on to say that we should qualify for more.
I have to get her current hours covered again before I can even begin to think of more hours. It sounds fabulous though. Anyway, I have made a few call this morning. Now we wait. Our insurance should get back to us soon to tell us why it was denied and the course of action they suggest we take. Then we will take that info and start over again.
There is always something. I hope that we can get this one resolved a little quicker this time around.
Friday, September 18, 2009
Wednesday, September 16, 2009
One of Those Days...
I think I maybe should have stayed in bed today. Casey has a pretty full day so I got early to get dressed and try to get a head start on things. After I got dressed I REALLY wanted some coffee. I got it all ready, pressed brew and stood back to wait for my cup. WRONG!!!! I put the lid on wrong (I do this a couple times a year) and the beans get backed up and clog the line then the water backs up then I have a huge mess all over the counter and the maker. Ugh. I spent 30 minutes (that I did not have to spare) cleaning up the the mess then finally brewed another pot.
Once I finally had my coffee I had to get on the phone with Maxim (our nursing service). I had to call them to discuss the Ann situation. Luckily they have a person in mind that they are going to try and get out here soon for us to meet. Maybe even this afternoon. I do feel a lot better now that I have gotten Ann off the schedule.
After I got off the phone I had just enough time to help Angela get Casey ready for her Ortho appointment. Casey was really tired and slept the whole way there. Shortly after we got there Casey started getting all worked up. We were suctioning nonstop. I was in such a rush this morning to get out of the house on time I forgot to change her Scopolamine patch. I think the one she had one wore out and she was just a little faucet.
In between suctioning we noticed a little girl across the aisle that was wearing a scope patch as well. I started talking with her mom and it was really interesting. Her daughter (Kennady) is actually doing a lot of the same things as Casey. She is 8 and did not have to be suctioned all the time like Casey but other than that they had a lot in common. They have been trying to work with Botox and patches, she had a gtube plugged into to what looked like the same pump we use, she even wore a pink dress to her appointment. Casey was not having a good morning so we didn't get to chat too much. We did exchange contact info though. Hopefully we can get together sometime or at least stay in contact. They are from San Marcos so I don't think we can see them often, but hopefully we can see them sometime. It is so rare to see anyone with as many things in common as Kennady had with Casey.
When we went back to the exam room we decided to do a deep suction. The patches have made her mouth and throat VERY dry. When we did the deep suction there was a bit of fresh blood in her throat. Never a good thing. We got her cleared out then gave her some time to see if the bleed would clot. We had to do this a few times before the bleeding seemed to stop.
The doctor came in and overall that part went well. We are going to add OT in her outpatient plan there at the hospital. I hope we can get it the same day as water therapy so it can be one trip. The OT that we see will be able to get us a different type of hand splint as well. I hope we can find one that will work on both Casey's hands and oral stuff.
Casey was really upset the entire way home. We stop to talk with Kennady and her mom a little on the way out, but Casey was just so upset. We got her loaded up and got home as quick as we could. Once we got her home and settled in we gave Casey her Tobi (breathing treatment). The Tobi is 28 days on 28 days off. We just started her on round yesterday evening. A few days before she starts a round she gets pretty junky. It is amazing how quick these treatments kick in. You can hear her lungs clear up as you give it to her.
Casey was supposed to have PT this afternoon, but after her morning we decided to reschedule. PT thankfully was able to move to Friday. Now we will spend the afternoon trying to get her to relax instead of working her right back up again.
I think that is about it for now. As always, we hope everyone is well.
Once I finally had my coffee I had to get on the phone with Maxim (our nursing service). I had to call them to discuss the Ann situation. Luckily they have a person in mind that they are going to try and get out here soon for us to meet. Maybe even this afternoon. I do feel a lot better now that I have gotten Ann off the schedule.
After I got off the phone I had just enough time to help Angela get Casey ready for her Ortho appointment. Casey was really tired and slept the whole way there. Shortly after we got there Casey started getting all worked up. We were suctioning nonstop. I was in such a rush this morning to get out of the house on time I forgot to change her Scopolamine patch. I think the one she had one wore out and she was just a little faucet.
In between suctioning we noticed a little girl across the aisle that was wearing a scope patch as well. I started talking with her mom and it was really interesting. Her daughter (Kennady) is actually doing a lot of the same things as Casey. She is 8 and did not have to be suctioned all the time like Casey but other than that they had a lot in common. They have been trying to work with Botox and patches, she had a gtube plugged into to what looked like the same pump we use, she even wore a pink dress to her appointment. Casey was not having a good morning so we didn't get to chat too much. We did exchange contact info though. Hopefully we can get together sometime or at least stay in contact. They are from San Marcos so I don't think we can see them often, but hopefully we can see them sometime. It is so rare to see anyone with as many things in common as Kennady had with Casey.
When we went back to the exam room we decided to do a deep suction. The patches have made her mouth and throat VERY dry. When we did the deep suction there was a bit of fresh blood in her throat. Never a good thing. We got her cleared out then gave her some time to see if the bleed would clot. We had to do this a few times before the bleeding seemed to stop.
The doctor came in and overall that part went well. We are going to add OT in her outpatient plan there at the hospital. I hope we can get it the same day as water therapy so it can be one trip. The OT that we see will be able to get us a different type of hand splint as well. I hope we can find one that will work on both Casey's hands and oral stuff.
Casey was really upset the entire way home. We stop to talk with Kennady and her mom a little on the way out, but Casey was just so upset. We got her loaded up and got home as quick as we could. Once we got her home and settled in we gave Casey her Tobi (breathing treatment). The Tobi is 28 days on 28 days off. We just started her on round yesterday evening. A few days before she starts a round she gets pretty junky. It is amazing how quick these treatments kick in. You can hear her lungs clear up as you give it to her.
Casey was supposed to have PT this afternoon, but after her morning we decided to reschedule. PT thankfully was able to move to Friday. Now we will spend the afternoon trying to get her to relax instead of working her right back up again.
I think that is about it for now. As always, we hope everyone is well.
Tuesday, September 15, 2009
The Nursing Saga Continues
We have been training and working with 2 new nurses over the past month. Angela comes Wed-Fri then we have Ann Mon-Tue. Angela is the one I was really worried about. On her 3rd day she pulled out Casey's gtube. I was so worried that she was not going to be worth keeping. She actually has turned out to be good. She is MUCH more careful now and has been doing a really good job. Ann started out great. I really thought Ann was going to be wonderful. I was way off on this one.
The situation with Ann is crazy. She started out great and every day that she is here she gets worse. I have never seen anything like this before. Most people get better at things the more time they spend doing it. Ann makes more mistakes and forgets things all time. I have to show her how to do the same things over and over and over again.
I have told her exactly how to position Casey to reduce leaking with her tube and keep her comfortable. She keeps doing what I have specifically told her NOT to do. The absolute worst positions for Casey. So of course, her tube is just a mess after Ann has been here. There has been 2 occasions this week that Casey has started to fuss, then built up to screaming in pain. Ann just sits there looking at her. When we step in and take her away. Ann is like "Oh, was that a bad sound?" She doesn't seem to get it.
I feel like I have to spend more time watching her today than I did on her first day here. I need to be able to leave Casey in her nurse's care without having to step back in every 5 minutes. I am going to call and get a new nurse for Monday and Tuesdays. We can not keep her.
The situation with Ann is crazy. She started out great and every day that she is here she gets worse. I have never seen anything like this before. Most people get better at things the more time they spend doing it. Ann makes more mistakes and forgets things all time. I have to show her how to do the same things over and over and over again.
I have told her exactly how to position Casey to reduce leaking with her tube and keep her comfortable. She keeps doing what I have specifically told her NOT to do. The absolute worst positions for Casey. So of course, her tube is just a mess after Ann has been here. There has been 2 occasions this week that Casey has started to fuss, then built up to screaming in pain. Ann just sits there looking at her. When we step in and take her away. Ann is like "Oh, was that a bad sound?" She doesn't seem to get it.
I feel like I have to spend more time watching her today than I did on her first day here. I need to be able to leave Casey in her nurse's care without having to step back in every 5 minutes. I am going to call and get a new nurse for Monday and Tuesdays. We can not keep her.
Saturday, September 12, 2009
"Casey Erin Barnes Supplemental Needs Trust"
I wrote MANY months back about having to take Casey to stay at a nursing home for one night. It was a horrible experience and really put a lot of things into perspective for us. Mainly, that we want to do everything humanly possible to avoid having Casey ever end up in a place like that.
You may be trying to remember why we went there to start with. States offer Medicaid, but usually just for very low income levels. Thankfully, many states (including Texas) have chosen to adopt exceptions for severe cases. These are often referred to as Rider 28 or Katie Beckett Waivers (after the little girl who inspired with law). Each state has different guidelines, and in order for Casey to qualify, she had to have more than 3 disabling diagnosis, be examined by a state nurse, provide letters of medical necessity, and finally she had to stay 1 night in a state certified (there were only a few to choose from) nursing facility. While at the facility, the staff monitored Casey's care and condition then signed off on her severity.
Once in the program, Casey's continued eligibility is based on her income rather than the income of the household. This is a really big deal. With Medicaid combined with our private insurance, we are able to do a lot more for Casey. The even bigger deal is that if anything were to ever happen to our existing insurance, Medicaid would take over for Casey. Tim and I will have to figure something out for ourselves, but at least she will be covered.
Now the trick is that in order to keep her covered, she can not have an income. It's not like she can go get a job, she is only 3, so we aren't worried about that. However she can not have money paid directly to her. If she were to directly get a sum of money it would disqualify her for medical coverage. This is so scary to us.
After doing a lot of research, Tim and I spent the past couple of months working with an Elder attorney that specializes in supplemental needs trusts. These are hard to find, but worth every penny when you consider the cost of us not having something in place. Now that we have a trust for Casey, if anything were to happen to Tim and I, Casey could still use the funds from our life insurance and also continue to receive Medicaid for health insurance - since we name her trust as the beneficiary, instead of Casey directly. Tim and I are not leaving her a ton of money, but the amount that we have in life insurance for her would be enough to get her disqualified for Medicaid coverage if we left it to her directly. Then if that's not bad enough, if she is disqualified she would have to use any money we leave to pay her medical expenses, which would be gone in a year or so max. Then she would be left with nothing. We can also use the trust now for other reasons, like when we do fund raising for some of her treatments.
We just can not bare the thought of her ending up in a place like we had to stay a while back. We just signed all the papers of her trust a few days ago (we even took Casey with us to the signing) - what a huge relief. We feel so much better knowing this is in place. We can't say enough good things about the Greening Law Firm here in Austin, TX. I know people love to bash lawyers, but these guys really surprised us - they get it.
You may be trying to remember why we went there to start with. States offer Medicaid, but usually just for very low income levels. Thankfully, many states (including Texas) have chosen to adopt exceptions for severe cases. These are often referred to as Rider 28 or Katie Beckett Waivers (after the little girl who inspired with law). Each state has different guidelines, and in order for Casey to qualify, she had to have more than 3 disabling diagnosis, be examined by a state nurse, provide letters of medical necessity, and finally she had to stay 1 night in a state certified (there were only a few to choose from) nursing facility. While at the facility, the staff monitored Casey's care and condition then signed off on her severity.
Once in the program, Casey's continued eligibility is based on her income rather than the income of the household. This is a really big deal. With Medicaid combined with our private insurance, we are able to do a lot more for Casey. The even bigger deal is that if anything were to ever happen to our existing insurance, Medicaid would take over for Casey. Tim and I will have to figure something out for ourselves, but at least she will be covered.
Now the trick is that in order to keep her covered, she can not have an income. It's not like she can go get a job, she is only 3, so we aren't worried about that. However she can not have money paid directly to her. If she were to directly get a sum of money it would disqualify her for medical coverage. This is so scary to us.
After doing a lot of research, Tim and I spent the past couple of months working with an Elder attorney that specializes in supplemental needs trusts. These are hard to find, but worth every penny when you consider the cost of us not having something in place. Now that we have a trust for Casey, if anything were to happen to Tim and I, Casey could still use the funds from our life insurance and also continue to receive Medicaid for health insurance - since we name her trust as the beneficiary, instead of Casey directly. Tim and I are not leaving her a ton of money, but the amount that we have in life insurance for her would be enough to get her disqualified for Medicaid coverage if we left it to her directly. Then if that's not bad enough, if she is disqualified she would have to use any money we leave to pay her medical expenses, which would be gone in a year or so max. Then she would be left with nothing. We can also use the trust now for other reasons, like when we do fund raising for some of her treatments.
We just can not bare the thought of her ending up in a place like we had to stay a while back. We just signed all the papers of her trust a few days ago (we even took Casey with us to the signing) - what a huge relief. We feel so much better knowing this is in place. We can't say enough good things about the Greening Law Firm here in Austin, TX. I know people love to bash lawyers, but these guys really surprised us - they get it.
Friday, September 11, 2009
Gloves & More
Casey wears splint or gloves on her hands that are designed to keep her hand and thumb open instead of in a fist. She has had to wear some version of these since short after birth. You can see some of her baby NICU pictures with little blue plastic ones. The first set were to open up her fingers. The first pair did not do much at all for her thumbs. Later we moved to a neoprene model that was focused on opening her thumb and did not really do much for her fingers. When Casey is relaxed or sleeping she is pretty good about getting her fingers open so we figured that the focus should be on the thumb if we have to choose one. Casey has been wearing McKie Splints for years. They are easy to use, easy to clean, affordable, etc. Just before she switched from ECI to MISD (Arpil) ECI wanted us to try out a new splint that would focus on her thumb, fingers and even wrist. Sure, why not.
We had them measure Casey's hands, fingers, wrist, etc and order the gloves. We got them right as she switched to the school district. We tried to use them a few times after we got them but they just seemed off. The fingers sit on this big board like paddle and they are so massive. Casey can not do anything with her hands while in the gloves. Usually they are designed for kids to wear all day. There is just no way with these that we could ever get her to go more than 20 minutes. We finally called the company that ordered them and took her back up today to get them refitted. They remeasured and told us that the gloves are SUPPOSED to fit like that. What an awful design.
We had to go out in the rain to get to the appointment. Then the building was totally impossible to get to. We had to circle all around and go hunting for the actual suite. Then they told us that the glove was designed to be unusable basically. So frustrating. We have decided that next week when Casey goes in for her Orthopedic follow-up we are going to see if they can order us better ones. I am pretty sure they are going to want to do new AFO's as well so maybe we can get them all done in one sitting.
Casey's vision teacher/therapist and occupational therapist are going to start coming again next week. Still no word from Speech. I liked ECI so much better than the school for therapies. They worked all year and were so much better about scheduling and setting goals and stuff. I think I need to find another source for Casey's therapies. The school can be extra but I don't think they are working out as her primary source.
Casey had a GI appointment last week. Things went well. She weighed 29lbs. A few weeks before she was only 27 for her Neuro appointment. I told the GI doctor that I was really worried because she had lost weight and so I was trying to push her food a little to make up for all the leaking. He said that the aggressive rate we have been hitting for her is a good amount and to keep her on it. He also said not to worry about the 27 from Neuro. He said that they are not exact in weights and that it may have been off a little. He also warned that we be sure not to get her on the heavy side either. Such a balancing act. We need her to gain weight and grow, but not too much.
I think that is about it for now. We have a few more appointments and another round of Botox this month. I will post updates as we have them. As always, we hope everyone is doing well.
We had them measure Casey's hands, fingers, wrist, etc and order the gloves. We got them right as she switched to the school district. We tried to use them a few times after we got them but they just seemed off. The fingers sit on this big board like paddle and they are so massive. Casey can not do anything with her hands while in the gloves. Usually they are designed for kids to wear all day. There is just no way with these that we could ever get her to go more than 20 minutes. We finally called the company that ordered them and took her back up today to get them refitted. They remeasured and told us that the gloves are SUPPOSED to fit like that. What an awful design.
We had to go out in the rain to get to the appointment. Then the building was totally impossible to get to. We had to circle all around and go hunting for the actual suite. Then they told us that the glove was designed to be unusable basically. So frustrating. We have decided that next week when Casey goes in for her Orthopedic follow-up we are going to see if they can order us better ones. I am pretty sure they are going to want to do new AFO's as well so maybe we can get them all done in one sitting.
Casey's vision teacher/therapist and occupational therapist are going to start coming again next week. Still no word from Speech. I liked ECI so much better than the school for therapies. They worked all year and were so much better about scheduling and setting goals and stuff. I think I need to find another source for Casey's therapies. The school can be extra but I don't think they are working out as her primary source.
Casey had a GI appointment last week. Things went well. She weighed 29lbs. A few weeks before she was only 27 for her Neuro appointment. I told the GI doctor that I was really worried because she had lost weight and so I was trying to push her food a little to make up for all the leaking. He said that the aggressive rate we have been hitting for her is a good amount and to keep her on it. He also said not to worry about the 27 from Neuro. He said that they are not exact in weights and that it may have been off a little. He also warned that we be sure not to get her on the heavy side either. Such a balancing act. We need her to gain weight and grow, but not too much.
I think that is about it for now. We have a few more appointments and another round of Botox this month. I will post updates as we have them. As always, we hope everyone is doing well.
Thursday, September 10, 2009
Lost Pet
I have seen people put up posters for lost dogs, cats, even birds but never a fish. I honestly don't know what happened to Casey's sucker fish. If I thought there were a chance for him to come back home I would put up the "Lost Pet" poster for him.
Every so often I have to give her fish tank a good cleaning. I went in to do this morning. I saw Al, the 2 shrimp, but could not find the sucker anywhere. I search in the plant, in the rocks, everywhere he likes to hide but he was nowhere to be found. I proceeded to clean the tank. After I got most of it done and still could not find the sucker I decided to dump it and start fresh. I moved the other fish to another location and went about pulling everything out of the tank. Still no sucker. Then I opened up the filter to see if he got sucked in, no. He is was just missing.
I decided that Tim must have found him dead and flushed him and just not mentioned it. So I asked and he said that he did not take the sucker out either. How does a person lose a fish?! It's not like he ran away, I don't think. The only other option we have come up with is that the beta (Al) must have eaten him. So weird.
Every so often I have to give her fish tank a good cleaning. I went in to do this morning. I saw Al, the 2 shrimp, but could not find the sucker anywhere. I search in the plant, in the rocks, everywhere he likes to hide but he was nowhere to be found. I proceeded to clean the tank. After I got most of it done and still could not find the sucker I decided to dump it and start fresh. I moved the other fish to another location and went about pulling everything out of the tank. Still no sucker. Then I opened up the filter to see if he got sucked in, no. He is was just missing.
I decided that Tim must have found him dead and flushed him and just not mentioned it. So I asked and he said that he did not take the sucker out either. How does a person lose a fish?! It's not like he ran away, I don't think. The only other option we have come up with is that the beta (Al) must have eaten him. So weird.
Thursday, September 03, 2009
Busy Day
We had a meeting with our lawyer this morning. We have been working on setting up our wills, and a trusts for Casey and all that good stuff. Today was our final meeting. We had to go in, review all the final drafts, and sign a bunch of stuff. We decided to take Casey with us. The first half of the meeting went great. Casey was so calm and content to just hang out in her chair. Then about half way through I don't know if she just got bored, if it was too hot, not sure what caused it but Casey had had enough. She was so mad. Then a little later and she had a big wet diaper to go with it. We were very happy to sign the final paper and get her back home.
After we had been home for about 30 minutes Casey's nurse came in. She had just enough time to get all of Casey's vitals then help me load her back up. Casey had water therapy this afternoon. She did great today. Margaret was able to get some really good stretches with Casey's arms and legs. Casey yelled some, but overall she cooperated pretty well.
After therapy we got Casey loaded into the car, again, and started home. Before I pulled the van out of the parking spot Casey was sound asleep. She slept the entire way home. When we got back home I picked her up to carry her in to the house and she barely even noticed I was moving her. She was so worn out from her busy day. She slept for a good hour.
Shortly after Casey woke up a delivery person from a new vendor was here. We are trying out a local vendor for Casey's suction equipment. We got a new (stationary- not portable) machine for the bedroom. It is a little quieter. We will try it out tonight. There are a few items that they did not bring yet. If they get us the rest of our order soon and everything looks good we will stick with them.
Casey has been using the scopolamine patch for just over a week now. So far so good. She seems to be a bit drier and we are suctioning a little bit less. We still need to watch her for a little while, but so far so good.
That's about it for now. We are still working on nursing. We have one that is working 3 days a week. We still need to find one to pick up the other 2. I really hope to get this person in place and trained soon. We are also still waiting on Casey's therapists to set up the new schedules for this semester. As always, we hope everyone is doing well.
After we had been home for about 30 minutes Casey's nurse came in. She had just enough time to get all of Casey's vitals then help me load her back up. Casey had water therapy this afternoon. She did great today. Margaret was able to get some really good stretches with Casey's arms and legs. Casey yelled some, but overall she cooperated pretty well.
After therapy we got Casey loaded into the car, again, and started home. Before I pulled the van out of the parking spot Casey was sound asleep. She slept the entire way home. When we got back home I picked her up to carry her in to the house and she barely even noticed I was moving her. She was so worn out from her busy day. She slept for a good hour.
Shortly after Casey woke up a delivery person from a new vendor was here. We are trying out a local vendor for Casey's suction equipment. We got a new (stationary- not portable) machine for the bedroom. It is a little quieter. We will try it out tonight. There are a few items that they did not bring yet. If they get us the rest of our order soon and everything looks good we will stick with them.
Casey has been using the scopolamine patch for just over a week now. So far so good. She seems to be a bit drier and we are suctioning a little bit less. We still need to watch her for a little while, but so far so good.
That's about it for now. We are still working on nursing. We have one that is working 3 days a week. We still need to find one to pick up the other 2. I really hope to get this person in place and trained soon. We are also still waiting on Casey's therapists to set up the new schedules for this semester. As always, we hope everyone is doing well.
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