I hope everyone had a wonderful day!!!
Happy Valentine's Day!!!
Fish
Thursday, February 14, 2013
Saturday, February 2, 2013
What a catch up...
Wow it has been over a few months since I lasted posted anything. I feel horrible, but things have been happening so fast that I just never have time to do everything that I need to do. There are time that I struggle to stay up and on top of everything.
We had a very good thanksgiving at my sister in laws house. The kids had a blast and I was so happy that Dylan stayed dry the whole time! Well he was pretty proud of himself. :) Dylan is such a cutie and he enjoys staying dry and in big boy underwear as much as he can. He likes it so much that he had a very funny expression on his face when he didn't make it to the bathroom after he was in a diaper for the night. I couldn't help but laugh even though it was almost midnight. Ha ha ha!!!
Gavin, Nikole, and Rhett had a blast playing with cousins and just enjoying the day which was a blessing to me. It was great!!
December came and went and it was dragging so bad but now that I look back it was a like a blink of an eye. LOL!!! Go figure... During December we had sickness hit our house really hard the week before Christmas. I was super sick with something I am not even sure because they couldn't diagnose me at all. That was super frustrating! I pretty much stayed home as much as I could and slept oh so much. The first day that I felt like I could get something done was January 1st.
The kids had a great Christmas thanks to so many people that helped our family. We have a tradition that our kids will get presents for their siblings even if it is something small. That way they have to think of other people and it has helped so much. They actually get so excited to get things for other people it is wonderful. It makes me smile to see them thinking of their brothers and sister depending on who is shopping. Then wen they open the gifts on Christmas the watch so happy and excited for those they got the gift for just to see their face. That is one of the most wonderful things that I enjoy seeing at Christmas. We also went to the Festival of Trees. The kids really enjoyed it but I know they with they had enough money to get things that are in the gift shops that they have there, or even buy a tree or something like that. I just love seeing all the hard work people put into items to help Primary Children's Medical Center.
With the new year brought on even more challenges that we had to deal with on top of birthdays in January. Dylan ended up with the flu the week of his birthday. He missed out having treats on his birthday with his class but they saved it for when he was able to go back to school after he was feeling better. We decided to do cupcakes and have him only blow out a candle on one instead of him blowing out candles on a whole cake and giving us all the flu. We had a little party with him and it was just us since everyone that was going to come have kids, and I know they didn't want to get sick and I honestly don't blame them. On top of that Gavin had a virus the same week and then a stomach issue the very next week that caused him to stay home for a while. He was miserable I felt so bad for him. When I talked with the teacher there were several kids that were out sick so at least he wasn't the only one that was out sick.
On Nikole's birthday it was about the same as Dylan since Gavin was having a stomach problem and Dylan had just gotten over the flu. We did the cupcake for her too. She had a great day. I cannot believe that she is 11 and is not even 5 inches shorter than I am! She is going to be taller than me and I think it is going to happen soon. LOL! We had a surprise in the form of freezing rain on her birthday. That was super crazy. I think if I remember right she came home and told me that she had fallen when she was walking to and from school. I almost fell while I was outside too. It was rather funny. Nikole took treats for her class and barely had enough for her class. I am glad that I had gotten the big bag, it was treats for Dylan and Nikole and their classmates.
The same week that Nikole had her birthday and right after Dylan's birthday Rhett, Dylan, and Nikole all had doctor appointments that week, starting on Monday. The first appointment was the orthodontist for Rhett and Nikole, Rhett just got some more rubber bands and Nikole had a visit with him to see if she is ready for braces. She has to have 3 teeth pulled if they don't come out on their own. :( She is not happy about that since she has had so many pulled, but we will see if that is the case. The second appointment was a well child for Nikole and Dylan on Monday. We got to the doctor early since we left the hospital early and the wonderful doctor that we have was willing to see us during his lunch so we wouldn't have to wait for a hour to see him. The appointment went ok. found out that Nikole needs to see the eye doctor. I wonder if she will need glasses. Oh well we will be seeing him soon.
Tuesday was a cardiologist appointment. Rhett had an exercise study with ECHO. They got him down to 60 without oxygen and walking on the treadmill. His appointment was a super long appointment and it was just sad, since they wouldn't let me in the room to watch. When I saw him they were taking him to a room. As soon as we got to the room waiting for the doctor to meet with us the nurse closed the door and Rhett just broke down and started crying. I felt so bad for him. As I talked with him I found out that they made it really hard for him to breath and he was really upset that they had to do that to him. He was also almost as white as a wall from the lack of oxygen and the exercise that he got walking on the treadmill. The doctor said that his levels are up when his is without oxygen but it is too small to measure with oxygen. So he has to take speical meds to help him keep his pressure down.
Wednesday was an audiologist appointment for Dylan and Rhett. We had to make it out to Taylorsville to see the wonderful audiologist that we saw when Rhett was little, but after we moved it was just too far to drive there so often so we would go somewhere closer but seeing her again was wonderful. I got some paper work taken care of and we looked over the hearing loss for the boys and talked about hearing aids types that were available for the boys. Dylan decided that he didn't like the hearing aid that he is borrowing from school. It was a good meeting since Rhett's hearing aid is broken and trying to get it fixed doesn't look like it is going to happen anytime soon.
Friday was a pulmonary appointment for Rhett to get lung function and volumes. Gah! That was a day I would much rather never repeat, ever! We got there even after the freezing rain the day before and the snow and everything. So glad to make it there safe. They took Rhett back and had him doing a PFT(Pulmonary Lung Function), I waited for what seemed like forever, but more like 1 hour. After he was done he came back and was playing with his rewards, ie: toys from the reward box for doing a good job. So before the doctor was able to come into the room Rhett went to the bathroom and within 5 minutes after he left the doctor came in and decided to tell me the results. He went over everything from the previous 2 PFT and compared it to this one that he just did. Lets just say that he dropped in function and everything except for total lung volume. The results for the lung volume just stayed the same from the last time it dropped back in August. We are going to retest him and Dylan later this spring and see if the air quality had any effect on this last PFT.
This pictures are Rhett's PFT results from August and then again from January.
I also have the terminology that I know will help explain lots of this. I have listed the terminology below, and if you have questions I am more than willing to answer them.
Terminology and Definitions
FVC - Forced Vital Capacity - after the patient has taken in the deepest possible breath, this is the volume of air which can be forcibly and maximally exhaled out of the lungs until no more can be expired. FVC is usually expressed in units called liters. This PFT value is critically important in the diagnosis of obstructive and restrictive diseases.
FEV1 - Forced Expiratory Volume in One Second - this is the volume of air which can be forcibly exhaled from the lungs in the first second of a forced expiratory maneuver. It is expressed as liters. This PFT value is critically important in the diagnosis of obstructive and restrictive diseases.
FEV1/FVC - FEV1 Percent (FEV1%) - This number is the ratio of FEV1 to FVC - it indicates what percentage of the total FVC was expelled from the lungs during the first second of forced exhalation - this number is called FEV1%, %FEV1 or FEV1/FVC ratio. This PFT value is critically important in the diagnosis of obstructive and restrictive diseases.
FEV3 - Forced Expiratory Volume in Three Seconds - this is the volume of air which can be forcibly exhaled in three seconds - measured in Liters - this volume usually is fairly close to the FVC since, in the normal individual, most of the air in the lungs can be forcibly exhaled in three seconds.
FEV3/FVC - FEV3% - This number is the ratio of FEV3 to the FVC - it indicates what percentage of the total FVC was expelled during the first three seconds of forced exhalation. This is called %FEV3 or FEV3%.
PEFR - Peak Expiratory Flow Rate - this is maximum flow rate achieved by the patient during the forced vital capacity maneuver beginning after full inspiration and starting and ending with maximal expiration - it can either be measured in L/sec or L/min - this is a useful measure to see if the treatment is improving obstructive diseases like bronchoconstriction secondary to asthma.
FEF - Forced Expiratory Flow - Forced expiratory Flow is a measure of how much air can be expired from the lungs. It is a flow rate measurement. It is measured as liters/second or liters/minute. The FVC expiratory curve is divided into quartiles and therefore there is a FEF that exists for each quartile. The quartiles are expressed as FEF25%, FEF50%, and FEF75% of FVC.
FEF25% - This measurement describes the amount of air that was forcibly expelled in the first 25% of the total forced vital capacity test.
FEF50% - This measurement describes the amount of air expelled from the lungs during the first half (50%) of the forced vital capacity test. This test is useful when looking for obstructive disease. The amount of air that will have been expired in an obstructed patient is smaller than that measured in a normal patient.
FEF25%-75% - This measurement describes the amount of air expelled from the lungs during the middle half of the forced vital capacity test. Many physicians like to look at this value because it is an indicator of obstructive disease.
MVV - Maximal Voluntary Ventilation - this value is determined by having the patient breathe in and out as rapidly and fully as possible for 12 -15 seconds - the total volume of air moved during the test can be expressed as L/sec or L/min - this test parameter reflects the status of the respiratory muscles, compliance of the thorax-lung complex, and airway resistance. Surgeons like this test value because it is a quick and easy way to assess the strength of the patient's pulmonary musculature prior to surgery - a poor performance on this test suggests that the patient may have pulmonary problems postoperatively due to muscle weakness. MVV can therefore be viewed as a measure of respiratory muscle strength. One major cautionary note is that this test is effort dependent and therefore can be a poor predictor of true pulmonary strength and compliance.
Ok so after having the terminology and the results you can tell me what you think. It was just hard getting the results and then comparing them side by side like that.
After that appointment I get home and it was a mess. But on top of that daddy was taking Rhett and Gavin to a scout overnighter at a cabin. I was at a loss. I was already really upset about the test results and then having to deal with the mess by myself with Nikole and Dylan just put me over the edge. It was not pretty.
To follow up with all this info here are some pictures to make up for all the missing pictures as I haven't posted any in a while.
So there are some more recent pictures. I will have to take more pictures and post them soon.
We had a very good thanksgiving at my sister in laws house. The kids had a blast and I was so happy that Dylan stayed dry the whole time! Well he was pretty proud of himself. :) Dylan is such a cutie and he enjoys staying dry and in big boy underwear as much as he can. He likes it so much that he had a very funny expression on his face when he didn't make it to the bathroom after he was in a diaper for the night. I couldn't help but laugh even though it was almost midnight. Ha ha ha!!!
Gavin, Nikole, and Rhett had a blast playing with cousins and just enjoying the day which was a blessing to me. It was great!!
December came and went and it was dragging so bad but now that I look back it was a like a blink of an eye. LOL!!! Go figure... During December we had sickness hit our house really hard the week before Christmas. I was super sick with something I am not even sure because they couldn't diagnose me at all. That was super frustrating! I pretty much stayed home as much as I could and slept oh so much. The first day that I felt like I could get something done was January 1st.
The kids had a great Christmas thanks to so many people that helped our family. We have a tradition that our kids will get presents for their siblings even if it is something small. That way they have to think of other people and it has helped so much. They actually get so excited to get things for other people it is wonderful. It makes me smile to see them thinking of their brothers and sister depending on who is shopping. Then wen they open the gifts on Christmas the watch so happy and excited for those they got the gift for just to see their face. That is one of the most wonderful things that I enjoy seeing at Christmas. We also went to the Festival of Trees. The kids really enjoyed it but I know they with they had enough money to get things that are in the gift shops that they have there, or even buy a tree or something like that. I just love seeing all the hard work people put into items to help Primary Children's Medical Center.
With the new year brought on even more challenges that we had to deal with on top of birthdays in January. Dylan ended up with the flu the week of his birthday. He missed out having treats on his birthday with his class but they saved it for when he was able to go back to school after he was feeling better. We decided to do cupcakes and have him only blow out a candle on one instead of him blowing out candles on a whole cake and giving us all the flu. We had a little party with him and it was just us since everyone that was going to come have kids, and I know they didn't want to get sick and I honestly don't blame them. On top of that Gavin had a virus the same week and then a stomach issue the very next week that caused him to stay home for a while. He was miserable I felt so bad for him. When I talked with the teacher there were several kids that were out sick so at least he wasn't the only one that was out sick.
On Nikole's birthday it was about the same as Dylan since Gavin was having a stomach problem and Dylan had just gotten over the flu. We did the cupcake for her too. She had a great day. I cannot believe that she is 11 and is not even 5 inches shorter than I am! She is going to be taller than me and I think it is going to happen soon. LOL! We had a surprise in the form of freezing rain on her birthday. That was super crazy. I think if I remember right she came home and told me that she had fallen when she was walking to and from school. I almost fell while I was outside too. It was rather funny. Nikole took treats for her class and barely had enough for her class. I am glad that I had gotten the big bag, it was treats for Dylan and Nikole and their classmates.
The same week that Nikole had her birthday and right after Dylan's birthday Rhett, Dylan, and Nikole all had doctor appointments that week, starting on Monday. The first appointment was the orthodontist for Rhett and Nikole, Rhett just got some more rubber bands and Nikole had a visit with him to see if she is ready for braces. She has to have 3 teeth pulled if they don't come out on their own. :( She is not happy about that since she has had so many pulled, but we will see if that is the case. The second appointment was a well child for Nikole and Dylan on Monday. We got to the doctor early since we left the hospital early and the wonderful doctor that we have was willing to see us during his lunch so we wouldn't have to wait for a hour to see him. The appointment went ok. found out that Nikole needs to see the eye doctor. I wonder if she will need glasses. Oh well we will be seeing him soon.
Tuesday was a cardiologist appointment. Rhett had an exercise study with ECHO. They got him down to 60 without oxygen and walking on the treadmill. His appointment was a super long appointment and it was just sad, since they wouldn't let me in the room to watch. When I saw him they were taking him to a room. As soon as we got to the room waiting for the doctor to meet with us the nurse closed the door and Rhett just broke down and started crying. I felt so bad for him. As I talked with him I found out that they made it really hard for him to breath and he was really upset that they had to do that to him. He was also almost as white as a wall from the lack of oxygen and the exercise that he got walking on the treadmill. The doctor said that his levels are up when his is without oxygen but it is too small to measure with oxygen. So he has to take speical meds to help him keep his pressure down.
Wednesday was an audiologist appointment for Dylan and Rhett. We had to make it out to Taylorsville to see the wonderful audiologist that we saw when Rhett was little, but after we moved it was just too far to drive there so often so we would go somewhere closer but seeing her again was wonderful. I got some paper work taken care of and we looked over the hearing loss for the boys and talked about hearing aids types that were available for the boys. Dylan decided that he didn't like the hearing aid that he is borrowing from school. It was a good meeting since Rhett's hearing aid is broken and trying to get it fixed doesn't look like it is going to happen anytime soon.
Friday was a pulmonary appointment for Rhett to get lung function and volumes. Gah! That was a day I would much rather never repeat, ever! We got there even after the freezing rain the day before and the snow and everything. So glad to make it there safe. They took Rhett back and had him doing a PFT(Pulmonary Lung Function), I waited for what seemed like forever, but more like 1 hour. After he was done he came back and was playing with his rewards, ie: toys from the reward box for doing a good job. So before the doctor was able to come into the room Rhett went to the bathroom and within 5 minutes after he left the doctor came in and decided to tell me the results. He went over everything from the previous 2 PFT and compared it to this one that he just did. Lets just say that he dropped in function and everything except for total lung volume. The results for the lung volume just stayed the same from the last time it dropped back in August. We are going to retest him and Dylan later this spring and see if the air quality had any effect on this last PFT.
This pictures are Rhett's PFT results from August and then again from January.
 |
| August PFT |
 | |||
| January PFT |
Terminology and Definitions
FVC - Forced Vital Capacity - after the patient has taken in the deepest possible breath, this is the volume of air which can be forcibly and maximally exhaled out of the lungs until no more can be expired. FVC is usually expressed in units called liters. This PFT value is critically important in the diagnosis of obstructive and restrictive diseases.
FEV1 - Forced Expiratory Volume in One Second - this is the volume of air which can be forcibly exhaled from the lungs in the first second of a forced expiratory maneuver. It is expressed as liters. This PFT value is critically important in the diagnosis of obstructive and restrictive diseases.
FEV1/FVC - FEV1 Percent (FEV1%) - This number is the ratio of FEV1 to FVC - it indicates what percentage of the total FVC was expelled from the lungs during the first second of forced exhalation - this number is called FEV1%, %FEV1 or FEV1/FVC ratio. This PFT value is critically important in the diagnosis of obstructive and restrictive diseases.
FEV3 - Forced Expiratory Volume in Three Seconds - this is the volume of air which can be forcibly exhaled in three seconds - measured in Liters - this volume usually is fairly close to the FVC since, in the normal individual, most of the air in the lungs can be forcibly exhaled in three seconds.
FEV3/FVC - FEV3% - This number is the ratio of FEV3 to the FVC - it indicates what percentage of the total FVC was expelled during the first three seconds of forced exhalation. This is called %FEV3 or FEV3%.
PEFR - Peak Expiratory Flow Rate - this is maximum flow rate achieved by the patient during the forced vital capacity maneuver beginning after full inspiration and starting and ending with maximal expiration - it can either be measured in L/sec or L/min - this is a useful measure to see if the treatment is improving obstructive diseases like bronchoconstriction secondary to asthma.
FEF - Forced Expiratory Flow - Forced expiratory Flow is a measure of how much air can be expired from the lungs. It is a flow rate measurement. It is measured as liters/second or liters/minute. The FVC expiratory curve is divided into quartiles and therefore there is a FEF that exists for each quartile. The quartiles are expressed as FEF25%, FEF50%, and FEF75% of FVC.
FEF25% - This measurement describes the amount of air that was forcibly expelled in the first 25% of the total forced vital capacity test.
FEF50% - This measurement describes the amount of air expelled from the lungs during the first half (50%) of the forced vital capacity test. This test is useful when looking for obstructive disease. The amount of air that will have been expired in an obstructed patient is smaller than that measured in a normal patient.
FEF25%-75% - This measurement describes the amount of air expelled from the lungs during the middle half of the forced vital capacity test. Many physicians like to look at this value because it is an indicator of obstructive disease.
MVV - Maximal Voluntary Ventilation - this value is determined by having the patient breathe in and out as rapidly and fully as possible for 12 -15 seconds - the total volume of air moved during the test can be expressed as L/sec or L/min - this test parameter reflects the status of the respiratory muscles, compliance of the thorax-lung complex, and airway resistance. Surgeons like this test value because it is a quick and easy way to assess the strength of the patient's pulmonary musculature prior to surgery - a poor performance on this test suggests that the patient may have pulmonary problems postoperatively due to muscle weakness. MVV can therefore be viewed as a measure of respiratory muscle strength. One major cautionary note is that this test is effort dependent and therefore can be a poor predictor of true pulmonary strength and compliance.
Ok so after having the terminology and the results you can tell me what you think. It was just hard getting the results and then comparing them side by side like that.
After that appointment I get home and it was a mess. But on top of that daddy was taking Rhett and Gavin to a scout overnighter at a cabin. I was at a loss. I was already really upset about the test results and then having to deal with the mess by myself with Nikole and Dylan just put me over the edge. It was not pretty.
To follow up with all this info here are some pictures to make up for all the missing pictures as I haven't posted any in a while.
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| Love this Christmas present. LOL!! She is funny! |
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| Yummy! Before school and fresh fallen snow. |
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| One, two, three... jump!! Loves swimming. |
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| Love Christmas eve! So happy. |
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| It is hard to do face time if you don't have your hands. LOL! |
Monday, November 19, 2012
AWESOME!!!!
Nikole started swimming on the Jr. Panthers swim team the beginning of October. She practiced Monday, Wednesday, and Friday. The first week of practice she had a meet that Saturday and did AWESOME!!! It was her first swim meet and I was so happy that she did her best!!!
Gavin is taking swimming lessons on Tuesdays and Thursdays. He is trying to beat Nikole so he is working extra hard at swimming so that he can get on the swim team. Ha ha ha!! Too bad boys and girls don't actually compete against each other. They are going to kick some butt when they get better! I cannot wait to see how they do, and how amazing they will be together on a team with each other.
Rhett had his surgery on the 18th of October. Then we had a pleasant surprise and Rhett was released from the hospital on the 20th! Holy cow!!! Seriously this was a VEPTR revision meaning they broke ribs on the left side and expanded it out all at the same time. When he had the same surgery in March/April he wasn't released from the hospital until the Monday following the surgery. But for every revision he has always been released the Monday following the surgery. I was so happy that he was doing so well. He also told me that he wanted to go to school on Monday after surgery to see the faces of everyone. HA HA HA HA HA!!!! I bet some of their faces looked shocked that he was at school. I know I was sure surprised to see him go to school so soon after surgery. I know that his name was in a few temples and there was family and friends all praying for him. So he had a few hundred thousand people praying for him the week of his surgery and especially on the day of surgery. To see his recovery was amazing!! We went to a Halloween party since the other kids really wanted to go and Rhett was a great sport and went along too. He did stay in his wheelchair which was fine by me I was just amazed to see him up and out of the hospital. He went back to school the following Monday with a doctors note and medicine. He has done great!
The kids picked out costumes that we already had at the house since we didn't have the money of the time to do anything else. Dylan picked out a dog, Gavin was Darth Vader (again), Nikole picked out a costume that I got for myself a long time ago(was a witch), and Rhett decided to be Phantom from Phantom of the Opera. Wow was a lucky to get out of this holiday so easy at least that is what I thought until Halloween. Ha ha ha!!!
This is less than 2 weeks after surgery. I am just glad that we had everything at home and we even made Rhett's mask. So on Halloween this is what I get when Rhett comes home.
It was funny to see him really worried about his make-up. LOL!! He went with Nikole, Gavin, and Dylan with daddy out trick or treating. When he came back he starting peeling off the make-up and when I saw his face it was swollen and itchy. It was like his whole half of his face was covered in hives. Found out that the make-up was latex. I guess that latex precaution that he has had at the hospital is now an actual allergy. :( How frustrating! I called the nurse the very next day and let her know so know they know at the school.
By the beginning of November we were on a roll. All the kids were back in school and things were back to normal, except the kids were playing with the on off cold thing that keeps going around. Grr... those nasty cold bugs.
I have actually needed to put everything that I do in my calendar so I can see what I do and where all my time disappears too. Ha ha ha!! I honestly didn't realize how busy I really was until I did do that and now I am amazed that I have time for anything.
On November 9th I noticed there was some infection in Rhett's incision from this surgery he just had. I called the doctors office Monday sent some pictures to them and they called out medicine for Rhett hoping that would help. When we went to go get it from the pharmacy it wasn't there! Holy cow so the next day when I called the doctor's office we played phone tag all day. I did find out where they called it in at. I called the doctors office to see if they could call it in to the pharmacy closer that I asked them to the first time. After that they did, I called the pharmacy to find out if they got it and find out how much it was going to cost that way I could be prepared. That is when I was told that the insurance wasn't going to cover the costs until Saturday. I was really frustrated and found out that it had been filled out at the other pharmacy. It was a MESS! But we got it worked out and got it but it wasn't until Wednesday morning when he got his first dose. By then it was half way up his back and for a few days he was in quite a bit of pain. I felt horrible for him but there was nothing that I could do other than give him his medicine and hope for the best. But even by today it was still gooey and yucky red and inflamed. At least he isn't in pain that I know of but he hardly tells me unless it is really bad. So I am just not sure if this infection is going to go away on it's own or if he is going to have to go back into the OR to be cleaned out. Just his luck... I guess I will find out this week.
This was right after a great race!
Gavin is taking swimming lessons on Tuesdays and Thursdays. He is trying to beat Nikole so he is working extra hard at swimming so that he can get on the swim team. Ha ha ha!! Too bad boys and girls don't actually compete against each other. They are going to kick some butt when they get better! I cannot wait to see how they do, and how amazing they will be together on a team with each other.
Rhett had his surgery on the 18th of October. Then we had a pleasant surprise and Rhett was released from the hospital on the 20th! Holy cow!!! Seriously this was a VEPTR revision meaning they broke ribs on the left side and expanded it out all at the same time. When he had the same surgery in March/April he wasn't released from the hospital until the Monday following the surgery. But for every revision he has always been released the Monday following the surgery. I was so happy that he was doing so well. He also told me that he wanted to go to school on Monday after surgery to see the faces of everyone. HA HA HA HA HA!!!! I bet some of their faces looked shocked that he was at school. I know I was sure surprised to see him go to school so soon after surgery. I know that his name was in a few temples and there was family and friends all praying for him. So he had a few hundred thousand people praying for him the week of his surgery and especially on the day of surgery. To see his recovery was amazing!! We went to a Halloween party since the other kids really wanted to go and Rhett was a great sport and went along too. He did stay in his wheelchair which was fine by me I was just amazed to see him up and out of the hospital. He went back to school the following Monday with a doctors note and medicine. He has done great!
The kids picked out costumes that we already had at the house since we didn't have the money of the time to do anything else. Dylan picked out a dog, Gavin was Darth Vader (again), Nikole picked out a costume that I got for myself a long time ago(was a witch), and Rhett decided to be Phantom from Phantom of the Opera. Wow was a lucky to get out of this holiday so easy at least that is what I thought until Halloween. Ha ha ha!!!
Aren't they cute!!
This is less than 2 weeks after surgery. I am just glad that we had everything at home and we even made Rhett's mask. So on Halloween this is what I get when Rhett comes home.
 |
| Do I looked like I was burned by acid? |
Does it cover my make-up?
By the beginning of November we were on a roll. All the kids were back in school and things were back to normal, except the kids were playing with the on off cold thing that keeps going around. Grr... those nasty cold bugs.
I have actually needed to put everything that I do in my calendar so I can see what I do and where all my time disappears too. Ha ha ha!! I honestly didn't realize how busy I really was until I did do that and now I am amazed that I have time for anything.
On November 9th I noticed there was some infection in Rhett's incision from this surgery he just had. I called the doctors office Monday sent some pictures to them and they called out medicine for Rhett hoping that would help. When we went to go get it from the pharmacy it wasn't there! Holy cow so the next day when I called the doctor's office we played phone tag all day. I did find out where they called it in at. I called the doctors office to see if they could call it in to the pharmacy closer that I asked them to the first time. After that they did, I called the pharmacy to find out if they got it and find out how much it was going to cost that way I could be prepared. That is when I was told that the insurance wasn't going to cover the costs until Saturday. I was really frustrated and found out that it had been filled out at the other pharmacy. It was a MESS! But we got it worked out and got it but it wasn't until Wednesday morning when he got his first dose. By then it was half way up his back and for a few days he was in quite a bit of pain. I felt horrible for him but there was nothing that I could do other than give him his medicine and hope for the best. But even by today it was still gooey and yucky red and inflamed. At least he isn't in pain that I know of but he hardly tells me unless it is really bad. So I am just not sure if this infection is going to go away on it's own or if he is going to have to go back into the OR to be cleaned out. Just his luck... I guess I will find out this week.
Look at my cutie! He was helping daddy clean out his work car.
I will do a follow up post after I find out what is going on with Rhett and after I get some great shots of the Festival of Trees.
Friday, October 12, 2012
Rhett's Performances
This was the showcase performance(sorry about the quality I am not sure what happened) that Rhett was in at the Shakespeare Festival this past weekend. I am trying to get the video where you can see it better uploaded it is giving me grief.
As soon as I can I will see if I can get the other videos that we have uploaded so you can see how funny Rhett is, and when I say he is dramatic I mean he is dramatic. But until I can get that loaded you can watch it this video or you can locate it on youtube at
https://www.youtube.com/watch?v=5831ofwUAag
Enjoy Rhett and his friends!
The big meeting and more
Well we finally had this big meeting that we were waiting for with all of Rhett's doctors and heck it was a long meeting. It lasted 1 1/2 hours. One of his doctors could only be there for a 1/2 hour since he had another meeting to attend. But I was glad that he was there even if he had to leave early. So my husband and I were the first ones to show up to the meeting since we were told that they had to start on time at 12:00pm since the pulmonologist had another appointment at 12:30pm. That is cutting it close. We had the cardiologist(heart doctor), the pulmonologist(lung doctor), the pediatrician(his normal doctor), the orthopedic(bone doctor) surgeon, the geneticist(not sure how to describe his job), one of the cardiologist assistants, two deaf school social workers, and the primary children's social worker(the one and only helper getting the meeting pulled together). It was crazy having all these people in one room at the same time knowing that they really want to help Rhett and they are working together to do what is best in their minds for Rhett.
The pulmonologist presented his piece of information and then had to leave early as the rest of us discussed everything. His lung volume, his pulmonary function, and his lung capacity all decreased since the last surgery. But they said that by the graph that we received from the doctor it has only dropped once so they said that wasn't a very good thing to go by. In order to go by that drop on the graph it would have to drop again after surgery again. So the doctors agreed that Rhett should have another surgery and then be tested again after surgery to see if he does in fact drop again. If he does drop then the doctors all agreed that he wouldn't need anymore surgery and we go into medical maintenance. Meaning a hospital bed for him to help make sure he is sleeping well and wearing his bypap, taking his heart medication, and taking his lung medication everyday. They talked about the possibility of Rhett maybe being depressed which he has been tested for and is not. We are still trying to figure out how to help him. I have a few at least 3 social workers helping me which is great because trying to do all of this by myself was so not going to happen very easy or fast. We finally got out of the meeting about 1:30 to 2 pm. It was stressful at least for me anyways.
After leaving we had been told to bring Rhett in for a pre-op appointment so they can decide what it is that the surgeon wants to do. We set that appointment up since he is already on the schedule for surgery. But the pre-op appointment was set up soon after the meeting, but the worst part for me was that normally I know a month in advance what kind of surgery Rhett or any one of my kids will be having but this time it was not that much time. So by the time the pre-op came around I was super nervous. We went in and talked with the doctors had the normal x-rays taken and an extra to get a bone growth survey done too. The bones are growing at the same speed he is aging. That is a good thing. The doctor then told us what he feels would be the best thing in his mind to do for Rhett. It was Rhett, daddy and I who were in the room talking discussing the surgery. The doctor said that he would like to revise the left side meaning breaking ribs on the left side of his body and expanding and pulling the chest out. After the doctor told us all of this and daddy asked some questions I turned to Rhett and said, "Ok Rhett what do you want to do, the doctor said he thinks this might help if he revises the left side and doesn't do anything to the right side. What to you think?" As he looked at me I just wanted to cry seeing his little mind working to understand he is deciding to have surgery or not. He nodded his head. I had to clarify, "So you are ok with that and the is the surgery you want to have?" He nodded again and I looked at the doctor and said, "Did you get that? He is willing to do the surgery." The doctor said ok and we are all ready to go.
Now the wait is on. Surgery is approaching and it is going to be a big one again! It really sucks but I guess there is no way around it.
I also have to figure out some fundraising things that I can do with my family to help us get the money we need to finish our basement. That way I can move Gavin out of the bedroom Rhett and he share so that way we can get the bed that Rhett needs to have in order to sleep better at night. I could totally use some ideas and help. If you have any ideas I would love the input. I will be talking to someone at a bank or something like that hopefully tomorrow to see if I can open an account to have all the money that is raised placed into, and as soon as I do I will have something on my blog where people can donate.
I will update after the surgery it won't be a long wait I promise.
The pulmonologist presented his piece of information and then had to leave early as the rest of us discussed everything. His lung volume, his pulmonary function, and his lung capacity all decreased since the last surgery. But they said that by the graph that we received from the doctor it has only dropped once so they said that wasn't a very good thing to go by. In order to go by that drop on the graph it would have to drop again after surgery again. So the doctors agreed that Rhett should have another surgery and then be tested again after surgery to see if he does in fact drop again. If he does drop then the doctors all agreed that he wouldn't need anymore surgery and we go into medical maintenance. Meaning a hospital bed for him to help make sure he is sleeping well and wearing his bypap, taking his heart medication, and taking his lung medication everyday. They talked about the possibility of Rhett maybe being depressed which he has been tested for and is not. We are still trying to figure out how to help him. I have a few at least 3 social workers helping me which is great because trying to do all of this by myself was so not going to happen very easy or fast. We finally got out of the meeting about 1:30 to 2 pm. It was stressful at least for me anyways.
After leaving we had been told to bring Rhett in for a pre-op appointment so they can decide what it is that the surgeon wants to do. We set that appointment up since he is already on the schedule for surgery. But the pre-op appointment was set up soon after the meeting, but the worst part for me was that normally I know a month in advance what kind of surgery Rhett or any one of my kids will be having but this time it was not that much time. So by the time the pre-op came around I was super nervous. We went in and talked with the doctors had the normal x-rays taken and an extra to get a bone growth survey done too. The bones are growing at the same speed he is aging. That is a good thing. The doctor then told us what he feels would be the best thing in his mind to do for Rhett. It was Rhett, daddy and I who were in the room talking discussing the surgery. The doctor said that he would like to revise the left side meaning breaking ribs on the left side of his body and expanding and pulling the chest out. After the doctor told us all of this and daddy asked some questions I turned to Rhett and said, "Ok Rhett what do you want to do, the doctor said he thinks this might help if he revises the left side and doesn't do anything to the right side. What to you think?" As he looked at me I just wanted to cry seeing his little mind working to understand he is deciding to have surgery or not. He nodded his head. I had to clarify, "So you are ok with that and the is the surgery you want to have?" He nodded again and I looked at the doctor and said, "Did you get that? He is willing to do the surgery." The doctor said ok and we are all ready to go.
Now the wait is on. Surgery is approaching and it is going to be a big one again! It really sucks but I guess there is no way around it.
I also have to figure out some fundraising things that I can do with my family to help us get the money we need to finish our basement. That way I can move Gavin out of the bedroom Rhett and he share so that way we can get the bed that Rhett needs to have in order to sleep better at night. I could totally use some ideas and help. If you have any ideas I would love the input. I will be talking to someone at a bank or something like that hopefully tomorrow to see if I can open an account to have all the money that is raised placed into, and as soon as I do I will have something on my blog where people can donate.
I will update after the surgery it won't be a long wait I promise.
Sunday, September 23, 2012
Nerves are going to end right?
It is coming up the meeting with all the doctors and to be perfectly honest I am scared of what the doctors are going to say. We are getting the orthopedic surgeon, the cardiologist, the pulmonologist, geneticist, the pediatrician, a few social workers, and a case manager. I am just wondering what the doctors are going to say and what that will mean for us telling Rhett the decisions that he is going to have to make. The bad part is that I am going to have to give all the information that the doctors have to Rhett and then asking him what he wants to do with that info. Then I and daddy will have to enforce what Rhett's choice. How many people have said that they let their 13 year old make the decisions about their life. That is basically letting him decide if he is ready to be done with everything and let life run it's course or keep going and doing what we have been doing all this time.
Oh man I am so nervous.... I would love to know what others would do in my place.
Saturday, September 15, 2012
Little quick update
Dylan was so cute the other day he walks in and says to me, "I need my oxygen." When I turned and looked at him I asked why he needed that he looked at me and said "I needed to be like Rhett." He was such a cutie getting his oxygen out and putting it on. Then he got so frustrated when his cord would get stuck on the things on the floor and the walls. It was super funny.
On a totally different note... Gosh waiting for doctors can be so stressing. I am still not sure when we are having this huge meeting. I think that they are going to have the meeting this month but man the stress is mounting. I cannot wait!!!
Rhett is tired and the teachers have noticed and have told me that he doesn't even want to walk from his chair to the board. That just about broke my heart when I was told that. He is struggling in school getting things done and turning them in for full credit. Why can't he just get stuff done on time? He has been treated like any other child and that is how it is going to stay as long as possible.
I have to post pictures of everything latter today. It is going to take me a while to get them all up so please be patient.
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