Casey's glasses came in last week. They were super fast. We actually got the glasses before we even got the doctor's report from the appointment. We are still working on getting them to fit her just right. As soon as we do I will get and post some pictures. They are really cute.
We decided to let our Tue-Thur nurse go. There were a couple of things that made us a little uneasy. We finally just decided it had been long enough and it was time to let her go. Our nursing company is trying to find someone to fill the shifts. Hopefully they will find us a good match. Until then we have a Monday and Friday nurse. They are both great. I wish we could clone them, either of them. Her Friday nurse just started today. Already they are getting along great.
On Monday we noticed Casey's left ear (the one with the cholestioma) was draining a lot. When we looked into the ear we saw what looked like a white fluid. I had never seen this before. Drainage is good, but it was a lot. I was a bit concerned. When I called ENT they were at lunch. After that we ended up getting pretty busy. Casey already had an appointment with ENT for Wednesday. We decided to just wait until then. She did not seem to be in pain or anything so we figured another day and half would not be a problem.
On Wednesday Casey's ENT cleaned out her ears really good. He said that the left ear had a lot of build up. The white fluid was actually moist skin. He said that the drainage we saw was probably just a part of the skin build up breaking loose and letting out some built up fluids. After he got her all cleaned out he said that the ears themselves are not bad. The left is still a concern, but it is not getting worse. We will just keep going back every couple of months and hopefully that will be plenty. He will keep an eye on her right ear too. Since the tube is out now he will keep an eye on it to determine if/when she needs another tube.
We have been able to move most of Casey's out of the house appointments to Monday or Friday for now. The few that will come up between we will figure out as we need to. This should work for a little while. I am sure PSA will be able to find us a new nurse in the next week or 2.
That is about it for now. Hopefully I will be able to post updates on a new nurse and maybe even on the bathroom remodel getting started soon. Until then, we hope that everyone is well.
Friday, February 26, 2010
Wednesday, February 17, 2010
Busy Month
Casey has been pretty busy this month (and still has a lot coming up).
She saw her dentist on the 2nd. That was kind of a frustrating day. We went to him because he is one of the only pediatric dentists in town that treats severely disabled kids. This was our second time to see him. His office is really nice, but out off Bee Caves. A VERY long drive. Even longer when Casey just does not want to be in the car.
Last time we saw him he was a little concerned about her teeth not all coming in yet. He wanted us to come back after Casey had had 6-9 months to grow a bit more. Many of Casey's teeth are still not breaking through. When he saw this, and took a look at her high/narrow pallet he was overwhelmed to the least. He told us he has never seen anyone like Casey and had no idea how to even begin treating her. He gave us a couple options.
1- We could drive to Houston and have her seen at Texas Children's hospital. He told us the head dentist there has seen it all and would know what to do. 2- We could take Casey to the Dental school in San Antonio. He said they may have more experience with her specific needs, but he did not have a person directly in mind. 3- We could get Casey into the Cleft Clinic here at Dell Children's. Casey does not have a cleft pallet, but if anyone in town is going to know how to approach her unique pallet concerns it would be this group.
The options were pretty simple for us. We will start here with the Cleft Clinic. The clinic takes a team approach. They will have a dentist, orthodontist and a plastic surgeon all come in and examine Casey. Then they will work together to figure out what will be best for Casey's teeth and mouth moving forward. We will be seeing this group in March. The drive is much better for us. We go over to Dell multiple times a week already so I know we can handle this. I am kind of excited to see what they can suggest for us. If they are not able to help then we will look into taking Casey to Texas Children's. That drive is just so hard on her.
Casey had GI the week after her dentist. She had lost a little more weight since her last visit. It is hard to say if she had lost since we put in the G instead of GJ though. We did not get a good before and after number. We have to take her in each week now until she starts gaining again. In addition we are trying to push her a little to eat more each day. That is much easier said than done.
On the 11th we met Casey's new pediatrician. She was really good. Dr. Legett recommended her to us. We liked our previous pediatrician. We just felt that a lot of times he was not comfortable with Casey's respiratory issues. Even on her best days he was a bit on edge. Dr. Bell is new to private practice. She did her residency at Dell Children's. She has been exposed to some of the more severe cases. Casey was actually having a really hard time while we were there and Dr. Bell did not flinch at all. I think it was time for us to make that move.
We had a new nurse come in to meet us on Friday. She was really sweet. She works full time as a NICU nurse in Temple. She just wants to pick up an extra shift a week. That worked out perfect for us. She will be here on Friday's, then we have Casey's other 2 nurses to work the rest of the week. It is nice to have 3 nurses all trained on Casey's care. That way anytime one is out we have a better chance of getting that shift covered.
Yesterday Casey went to meet a new eye doctor. Instead of taking her to an optomitrist we took her to a low vision specialist. This is the same type of doctor she saw in LA. That appointment went very well. Casey worked really hard to try and see the different images the doctor showed her. She seemed very attentive to the doctor as well. I think she really liked Dr. Miller's voice. We told them how hard it is to get Casey to wear her glasses. She lays on them and they dig into her face. They have a brand that is a soft plastic frame. It fits like a head band around the head instead of behind her ears. They are going to put some tinted frames in them to help block light a little too. They are really cute; pink of course. I expect to get them later this month or early next.
Next week Casey has an ENT appointment. Her ears have not been draining at all like they used to. I am not sure if this is good or bad. I guess we will know soon.
We are working on getting the master bathroom redone. We are killing ourselves trying to bathe Casey in our current tub. We are going to pull it out as well as the shower next to it. In their place we are going to have a much larger, accessible shower installed. Once we have that we can wheel Casey in and out much easier. Who knows, maybe she will actually grow to like bath time.
As always we hope everyone is well. We will post more soon.
She saw her dentist on the 2nd. That was kind of a frustrating day. We went to him because he is one of the only pediatric dentists in town that treats severely disabled kids. This was our second time to see him. His office is really nice, but out off Bee Caves. A VERY long drive. Even longer when Casey just does not want to be in the car.
Last time we saw him he was a little concerned about her teeth not all coming in yet. He wanted us to come back after Casey had had 6-9 months to grow a bit more. Many of Casey's teeth are still not breaking through. When he saw this, and took a look at her high/narrow pallet he was overwhelmed to the least. He told us he has never seen anyone like Casey and had no idea how to even begin treating her. He gave us a couple options.
1- We could drive to Houston and have her seen at Texas Children's hospital. He told us the head dentist there has seen it all and would know what to do. 2- We could take Casey to the Dental school in San Antonio. He said they may have more experience with her specific needs, but he did not have a person directly in mind. 3- We could get Casey into the Cleft Clinic here at Dell Children's. Casey does not have a cleft pallet, but if anyone in town is going to know how to approach her unique pallet concerns it would be this group.
The options were pretty simple for us. We will start here with the Cleft Clinic. The clinic takes a team approach. They will have a dentist, orthodontist and a plastic surgeon all come in and examine Casey. Then they will work together to figure out what will be best for Casey's teeth and mouth moving forward. We will be seeing this group in March. The drive is much better for us. We go over to Dell multiple times a week already so I know we can handle this. I am kind of excited to see what they can suggest for us. If they are not able to help then we will look into taking Casey to Texas Children's. That drive is just so hard on her.
Casey had GI the week after her dentist. She had lost a little more weight since her last visit. It is hard to say if she had lost since we put in the G instead of GJ though. We did not get a good before and after number. We have to take her in each week now until she starts gaining again. In addition we are trying to push her a little to eat more each day. That is much easier said than done.
On the 11th we met Casey's new pediatrician. She was really good. Dr. Legett recommended her to us. We liked our previous pediatrician. We just felt that a lot of times he was not comfortable with Casey's respiratory issues. Even on her best days he was a bit on edge. Dr. Bell is new to private practice. She did her residency at Dell Children's. She has been exposed to some of the more severe cases. Casey was actually having a really hard time while we were there and Dr. Bell did not flinch at all. I think it was time for us to make that move.
We had a new nurse come in to meet us on Friday. She was really sweet. She works full time as a NICU nurse in Temple. She just wants to pick up an extra shift a week. That worked out perfect for us. She will be here on Friday's, then we have Casey's other 2 nurses to work the rest of the week. It is nice to have 3 nurses all trained on Casey's care. That way anytime one is out we have a better chance of getting that shift covered.
Yesterday Casey went to meet a new eye doctor. Instead of taking her to an optomitrist we took her to a low vision specialist. This is the same type of doctor she saw in LA. That appointment went very well. Casey worked really hard to try and see the different images the doctor showed her. She seemed very attentive to the doctor as well. I think she really liked Dr. Miller's voice. We told them how hard it is to get Casey to wear her glasses. She lays on them and they dig into her face. They have a brand that is a soft plastic frame. It fits like a head band around the head instead of behind her ears. They are going to put some tinted frames in them to help block light a little too. They are really cute; pink of course. I expect to get them later this month or early next.
Next week Casey has an ENT appointment. Her ears have not been draining at all like they used to. I am not sure if this is good or bad. I guess we will know soon.
We are working on getting the master bathroom redone. We are killing ourselves trying to bathe Casey in our current tub. We are going to pull it out as well as the shower next to it. In their place we are going to have a much larger, accessible shower installed. Once we have that we can wheel Casey in and out much easier. Who knows, maybe she will actually grow to like bath time.
As always we hope everyone is well. We will post more soon.
Monday, February 01, 2010
Lots of Stuff
We went to see Dr. Legett on the 20th. This was our first out patient appointment with Dr. Legett. It was great for her to see Casey doing so much better. The appointment went really well. She has an order for Casey to get some stronger pain meds when she needs them. She also referred us to a new pediatrician. Casey's current pediatrician is nice, but he is scared of Casey. We will only go to him for immunizations and nothing else. We need a pediatrician that we can call when Casey needs one and we can not get right in to her specialist. I trust Dr. Legett and have very high expectations for the new doctor. Changing is kind of a pain. However, I think it is time.
Tim and I had a date on the 24th. This was our first date in a LONG time. I think the last time we went on a date was back in July. We went to a movie and grabbed a bite to eat. It was really nice. We recently changed our respite hours from a provider to what is called CDS (Consumer Directed Services). This basically means that we can hire/fire/train our own nurses. We have to do some paper work, but we are able to hire some nurses that don't want to work for another company. They can schedule more freely. We made this change as of 1/1/2010. It is great. Now we can hire some of Casey's previous nurses. They can still keep their full time jobs and just come by when they have some free time to make a little extra money. The initial setup is a lot of work. Once it is all setup though it just requires me to track and report hours for payment and taxes.
On Monday last week we removed Casey's GJ Tube. She started getting really upset over the weekend and it was just getting worse. We had been slowly trying to get her ready to feed in her stomach. On Monday we gave up on the GJ all together. She was so upset and nothing else seemed to be helping. We pulled it out and with in minutes her hear rate came down 40 points. She was so happy to have that thing out. As were we. In case she did not tolerate the G Tube feedings we scheduled an appointment to have the GJ redone on Thursday last week. We figured that would give us enough time to see if it was going to work or not. We are so happy to report that we canceled Thursday's GJ placement. She is back to her pre-hospital feed rate. She seems so much happier now.
Once a year we get a month that is CRAZY busy. It looks like February is that month. I spent most of the week last week on the phone scheduling everything. In addition to Casey's usual therapies she has a bunch a annual stuff coming up. She has a dentist appointment tomorrow. We meet the new pediatrician next week. The week after she has an eye appointment. The following week is her yearly MDCP review. If that is not enough, some of her quarterly and bi-annual appointments are this month too. She has GI, Pulmonary and ENT fit in where we could find time. Then early March she has Ortho as well. Today is the only day (other than weekends) that we do not have multiple tasks scheduled.
I am sure I will have plenty to post over the next few weeks. As always we hope everyone is doing well.
Tim and I had a date on the 24th. This was our first date in a LONG time. I think the last time we went on a date was back in July. We went to a movie and grabbed a bite to eat. It was really nice. We recently changed our respite hours from a provider to what is called CDS (Consumer Directed Services). This basically means that we can hire/fire/train our own nurses. We have to do some paper work, but we are able to hire some nurses that don't want to work for another company. They can schedule more freely. We made this change as of 1/1/2010. It is great. Now we can hire some of Casey's previous nurses. They can still keep their full time jobs and just come by when they have some free time to make a little extra money. The initial setup is a lot of work. Once it is all setup though it just requires me to track and report hours for payment and taxes.
On Monday last week we removed Casey's GJ Tube. She started getting really upset over the weekend and it was just getting worse. We had been slowly trying to get her ready to feed in her stomach. On Monday we gave up on the GJ all together. She was so upset and nothing else seemed to be helping. We pulled it out and with in minutes her hear rate came down 40 points. She was so happy to have that thing out. As were we. In case she did not tolerate the G Tube feedings we scheduled an appointment to have the GJ redone on Thursday last week. We figured that would give us enough time to see if it was going to work or not. We are so happy to report that we canceled Thursday's GJ placement. She is back to her pre-hospital feed rate. She seems so much happier now.
Once a year we get a month that is CRAZY busy. It looks like February is that month. I spent most of the week last week on the phone scheduling everything. In addition to Casey's usual therapies she has a bunch a annual stuff coming up. She has a dentist appointment tomorrow. We meet the new pediatrician next week. The week after she has an eye appointment. The following week is her yearly MDCP review. If that is not enough, some of her quarterly and bi-annual appointments are this month too. She has GI, Pulmonary and ENT fit in where we could find time. Then early March she has Ortho as well. Today is the only day (other than weekends) that we do not have multiple tasks scheduled.
I am sure I will have plenty to post over the next few weeks. As always we hope everyone is doing well.
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