Sunday, November 29, 2009
Side note
Ok just a little side note here for now. I am doing a tree for the Festival of Trees for a friend of mine. They lost their little boy in Oct. 2008 and it has been a hard road for them. Their little boy Kael was not quite 6 months old. He passed away from some medical complications. But as I have had more time to work on the tree the better I have felt. I have a beautiful picture that is going with the tree that his mother had picked out. Thank you! But I was framing it today and I just started crying, I didn't understand at the time. From doing so much with the tree and picture I understand! Kael's little spirit is close to me right now. The only thing that know is that he really is happy I am doing this for his family. He wants them to know how much he loves them. He is happy and doesn't hurt. It is like his spirit is talking to mine and there are times when it is strong enough to just make me break down for a little bit and then it is gone as fast as it came. It has been amazing! He is a very caring child and I hope my kids will all be caring like that. I think the reason that he is so close is that we are decorating the tree this coming Monday and the Festival starts Wednesday. I just sent a note to his parents asking them to do something that is going to be hard, but as I was writing I felt his little spirit so very strong, he really wants them to do what I have asked them to do. There was a time as I was writing them that I couldn't even see the screen because I was crying. The weird part is as I write this here nothing I am fine. I am blessed to heave his help while doing this for his family. They are a very blessed family and they are very loved. I am happy to know them and call them my friends.
Sunday, November 22, 2009
Just posted at VEPTR
I just posted this at the VEPTR site hoping that they might have some ideas, I would love to know what they would do if they were in my shoes.
Ok this really sucks that I have to write this all over again I thought I posted all the info somewhere and could copy and paste but no luck. Any ways...
Rhett went in for his normal expansion on 10-1-09 and he was sating 88 pre-op, which for him is really really bad. He needs to be above 95. So all the doctors checked him out and nothing was wrong with his lungs so they thought. everything sounded great so they did the surgery and everything went great, but he still couldn't get his sats up. I have to ask them for a x-ray because my mommy feelings were telling me something was very wrong and it took everything I had to get them to do a x-ray. The x-ray was great nothing was wrong, by this time I had also called his pediatrician and was trying to get him to understand that something was wrong. He kept telling me that it was his asthma, which I knew it wasn't because he had no signs of that at the time. The doctor at the hospital said that they were not going to keep him just because his sats were low, and sent us home with Rhett on oxygen on 10-2-09. So I had to take him in for another x-ray on that following Monday(10-5-09) at his doctors office. Where we found a little fluid around the left lung and they said as soon as that clears up then he will be fine. ha ha ha yea right! Any ways then I was wondering if that was the case then why was his sats low even before surgery? That doesn't make any sense to me. Well I monitored him really really close and by Wednesday 10-7-09 his sats were in the low 90's and he was breathing really hard so I turned up his oxygen to 1 1/2-2 liters and then he was sating at 98 but his breathing was still very labored. His heart rate was 130 and he was breathing so hard that his whole bed was moving. I couldn't take it any more and took him to the ER at 12:00 at night. They told me that they were not going to send us home until they discovered what was wrong. We were in the trauma bay for 6 hours. During that time he had another x-ray and it was the same as all the other ones there was really nothing but a little fluid around his left lung. We were finally sent to a room and then we had a pulmonary doctor come and see Rhett before 9 am and his normal doctor did too. Man we were tired! Well they wanted to get a PFT(pulmonary function test) done that day and they were going to notify cardiology that we were there since I was told that if I had to take him to the ER they would get notified and then the doctor could see him before December. Well nobody notified cardiology until I asked the nurse when they wanted to see Rhett. She called down to them and they found out that way that he was there. Friday 10-9-09 we got the results of the PFT and found out that they are the exact same from when he was 7 years old! What?!?!?! How can that be he is having his chest expanded to help his lungs grown for 6 years, so for 3 years was it even helping? His lungs have not grown for 3 years! He is permanently on oxygen again and hates it but is living with it. But how could this have been overlooked? So far his heart is not affected but it is only a matter of time if his lungs cannot support him. They also did a sleep study while we were there and found out that his oxygen isn't even helping he is on a by-pap but hates it and most of the times takes it off or doesn't even put it on. Consistent battle of the attitude!!! How do you get the doctors to understand that you know when things are not right? I was so pissed off at the orthopedic doctors for sending us home with out trying to find out what was wrong with my son.
We had a follow up and I laid it on the line and told them all that I knew and they even looked up his PFT and went silent and there was nothing they could say since it was cold hard facts screaming at them on paper. But still they want to do a CT before the next surgery which would be a CT in March and Surgery in April and I am going to demand a CT before the end of June so that way I know for sure if the surgeries are even helping. Why do them if they are not helping him? I would love some feedback at how you would feel and what you would do if you were me. Thanks
Ok this really sucks that I have to write this all over again I thought I posted all the info somewhere and could copy and paste but no luck. Any ways...
Rhett went in for his normal expansion on 10-1-09 and he was sating 88 pre-op, which for him is really really bad. He needs to be above 95. So all the doctors checked him out and nothing was wrong with his lungs so they thought. everything sounded great so they did the surgery and everything went great, but he still couldn't get his sats up. I have to ask them for a x-ray because my mommy feelings were telling me something was very wrong and it took everything I had to get them to do a x-ray. The x-ray was great nothing was wrong, by this time I had also called his pediatrician and was trying to get him to understand that something was wrong. He kept telling me that it was his asthma, which I knew it wasn't because he had no signs of that at the time. The doctor at the hospital said that they were not going to keep him just because his sats were low, and sent us home with Rhett on oxygen on 10-2-09. So I had to take him in for another x-ray on that following Monday(10-5-09) at his doctors office. Where we found a little fluid around the left lung and they said as soon as that clears up then he will be fine. ha ha ha yea right! Any ways then I was wondering if that was the case then why was his sats low even before surgery? That doesn't make any sense to me. Well I monitored him really really close and by Wednesday 10-7-09 his sats were in the low 90's and he was breathing really hard so I turned up his oxygen to 1 1/2-2 liters and then he was sating at 98 but his breathing was still very labored. His heart rate was 130 and he was breathing so hard that his whole bed was moving. I couldn't take it any more and took him to the ER at 12:00 at night. They told me that they were not going to send us home until they discovered what was wrong. We were in the trauma bay for 6 hours. During that time he had another x-ray and it was the same as all the other ones there was really nothing but a little fluid around his left lung. We were finally sent to a room and then we had a pulmonary doctor come and see Rhett before 9 am and his normal doctor did too. Man we were tired! Well they wanted to get a PFT(pulmonary function test) done that day and they were going to notify cardiology that we were there since I was told that if I had to take him to the ER they would get notified and then the doctor could see him before December. Well nobody notified cardiology until I asked the nurse when they wanted to see Rhett. She called down to them and they found out that way that he was there. Friday 10-9-09 we got the results of the PFT and found out that they are the exact same from when he was 7 years old! What?!?!?! How can that be he is having his chest expanded to help his lungs grown for 6 years, so for 3 years was it even helping? His lungs have not grown for 3 years! He is permanently on oxygen again and hates it but is living with it. But how could this have been overlooked? So far his heart is not affected but it is only a matter of time if his lungs cannot support him. They also did a sleep study while we were there and found out that his oxygen isn't even helping he is on a by-pap but hates it and most of the times takes it off or doesn't even put it on. Consistent battle of the attitude!!! How do you get the doctors to understand that you know when things are not right? I was so pissed off at the orthopedic doctors for sending us home with out trying to find out what was wrong with my son.
We had a follow up and I laid it on the line and told them all that I knew and they even looked up his PFT and went silent and there was nothing they could say since it was cold hard facts screaming at them on paper. But still they want to do a CT before the next surgery which would be a CT in March and Surgery in April and I am going to demand a CT before the end of June so that way I know for sure if the surgeries are even helping. Why do them if they are not helping him? I would love some feedback at how you would feel and what you would do if you were me. Thanks
Saturday, November 21, 2009
Time flies
Well things have been going crazy. Between school, therapies, doctors visits, and colds or what ever has been going around. Jaren has been working so hard pulling cable for a business and it has been a very long process. But while I was in the hospital with Dylan he was filling our garage with cable that needs to go to recycling so when I got home there was a ton of it. I kept falling over it for more than a week and then I just couldn't put up with it any longer. I got Nikole to help me load it all in my car and I asked Jaren to get the rest that needed to go and so he did it was just one little box that he put in my car. But I took it and and got enough for Nikole's new coat and also new shoes for me since mine were broken. I am grateful that Jaren had gotten so much cable from work that I was able to recycle it with Nikole's help putting it in my car. I did tell the men at the recycling place that my 7 year old and myself were the ones to load it all in and he was shocked. I am glad that Jaren works so hard outside of the home for our family.
One of my neighbors moved and asked for help so I was 2 houses away so I ran over and was helping load boxes into their big truck and it was just me helping for a long time and then some others came. But the family that moved was going to give me a twin bed meaning the whole thing, sheets included because they didn't need it any more. So that day I was frantically taking down Rhett and Gavin's bunk bed and making room since I saw the bed and was like where am I going to put that. I hurry and did that and then Jaren got home and helped take it down the stairs and then he come over to my friends house to help them finish putting the rest of their stuff in the truck. So after that whole thing my mom has been helping me try to get my house under control and that I am very grateful for. She has come over and help me move things around in the kids bedrooms to the point that they are all really liking their beds more now then when they did. Thank you mom and dad you are the best!!
Rhett's breathing has been a frustration, because of the cold he caught he has been coughing and it has been causing his asthma to become more of a problem. The doctor thinks that it is Nikole's cat that is causing all the grief but I honestly don't think so. Because it is mostly coughing outside and I know that sometimes that air can be really bad so I am not sure. We have to go see and allergist coming up hopefully we can cram appointments in before the new year that way we won't have to pay anything yet. This last week was crazy we went and got Rhett's hearing aids back from the fix shop. They took molds of Dylan's ears while they were at it. Rhett is signing more and it makes me wonder if this next year will be a good time to put him back in USDB (Utah School for the Deaf and Blind). I am so not sure what is going to happen. I feel like I have been tossed in the frying pan and in order not to get burned you have to dance. I sometimes feel like I am slipping.
Nikole has still been coughing non-stop since October and there is nothing that I can do to help her stop. I feel horrible that I can't do it all.Recently she has been telling me that her tummy hurts every morning. I know that something is wrong since it just came on and that it isn't her norm. She has also told me that she doesn't like going to school because she doesn't have any friends to play with at recess. What can I do about that? I have talked to the teacher and the school councilor but to no avail she still tells me such things. she is doing great in her studies and comes home and does her homework right away. She use to come home and refuse to work and just play but now she has found out that as soon as her homework is finished she is able to play longer than before. I am very grateful that she has figured it all out. She lost her coat recently, and just yesterday I was able to get her a new one. I did have to tell her that she must not lose it.
Gavin has been doing better since we talked to his teacher. He knows now that he can talk to his teacher if there is something that is bothering him. Before he would just bottle it all up and look like he is going to explode and other times he would have a melt down. I am glad that he has a nice teacher that is willing and able to work with him. I know he does have a temper but he is normally a good boy and really like his friends. He is very protective of his friends and it is cute to watch him. He really enjoys playing with Dylan after school and there are times that they are actually playing quiet together and I think that there is a huge problem because they are quiet. But they do have their moments that Gavin won't share but then he decides better.
Dylan is just hanging out and is enjoying what he can. He loves the fact that he can walk and loves be able to get around. He is almost running!!! Way cute!!! He wants to be just like his brothers and loves following them around. There are many times that it turns into a not so good thing especially when they are tired of him following them. Hopefully we will be getting him some loaner hearing aid from PCMC soon. that should be fun to see how he reacts to them. He loves carrying around his water so that way when ever he is thirsty he can have a drink without waiting. He is suppose to have a CT scan coming up this next year to get lung volume and stuff but it is not on the calendar at the moment that is something I have to do.
One of my neighbors moved and asked for help so I was 2 houses away so I ran over and was helping load boxes into their big truck and it was just me helping for a long time and then some others came. But the family that moved was going to give me a twin bed meaning the whole thing, sheets included because they didn't need it any more. So that day I was frantically taking down Rhett and Gavin's bunk bed and making room since I saw the bed and was like where am I going to put that. I hurry and did that and then Jaren got home and helped take it down the stairs and then he come over to my friends house to help them finish putting the rest of their stuff in the truck. So after that whole thing my mom has been helping me try to get my house under control and that I am very grateful for. She has come over and help me move things around in the kids bedrooms to the point that they are all really liking their beds more now then when they did. Thank you mom and dad you are the best!!
Rhett's breathing has been a frustration, because of the cold he caught he has been coughing and it has been causing his asthma to become more of a problem. The doctor thinks that it is Nikole's cat that is causing all the grief but I honestly don't think so. Because it is mostly coughing outside and I know that sometimes that air can be really bad so I am not sure. We have to go see and allergist coming up hopefully we can cram appointments in before the new year that way we won't have to pay anything yet. This last week was crazy we went and got Rhett's hearing aids back from the fix shop. They took molds of Dylan's ears while they were at it. Rhett is signing more and it makes me wonder if this next year will be a good time to put him back in USDB (Utah School for the Deaf and Blind). I am so not sure what is going to happen. I feel like I have been tossed in the frying pan and in order not to get burned you have to dance. I sometimes feel like I am slipping.
Nikole has still been coughing non-stop since October and there is nothing that I can do to help her stop. I feel horrible that I can't do it all.Recently she has been telling me that her tummy hurts every morning. I know that something is wrong since it just came on and that it isn't her norm. She has also told me that she doesn't like going to school because she doesn't have any friends to play with at recess. What can I do about that? I have talked to the teacher and the school councilor but to no avail she still tells me such things. she is doing great in her studies and comes home and does her homework right away. She use to come home and refuse to work and just play but now she has found out that as soon as her homework is finished she is able to play longer than before. I am very grateful that she has figured it all out. She lost her coat recently, and just yesterday I was able to get her a new one. I did have to tell her that she must not lose it.
Gavin has been doing better since we talked to his teacher. He knows now that he can talk to his teacher if there is something that is bothering him. Before he would just bottle it all up and look like he is going to explode and other times he would have a melt down. I am glad that he has a nice teacher that is willing and able to work with him. I know he does have a temper but he is normally a good boy and really like his friends. He is very protective of his friends and it is cute to watch him. He really enjoys playing with Dylan after school and there are times that they are actually playing quiet together and I think that there is a huge problem because they are quiet. But they do have their moments that Gavin won't share but then he decides better.
Dylan is just hanging out and is enjoying what he can. He loves the fact that he can walk and loves be able to get around. He is almost running!!! Way cute!!! He wants to be just like his brothers and loves following them around. There are many times that it turns into a not so good thing especially when they are tired of him following them. Hopefully we will be getting him some loaner hearing aid from PCMC soon. that should be fun to see how he reacts to them. He loves carrying around his water so that way when ever he is thirsty he can have a drink without waiting. He is suppose to have a CT scan coming up this next year to get lung volume and stuff but it is not on the calendar at the moment that is something I have to do.
Wednesday, November 11, 2009
Oh boy!
Well we went to see the orthopedic doctor and had to see what he had to say. It wasn't pretty and it wasn't ugly either.
He asked me what was going on and when I told him that his lungs haven't grown in 3 years he asked who said that and I let him know that the pulmonologist gave me that information. He asked if they said that and I said y es and asked me how come they said that and told him that the PFT(pulmonary function test) had the same numbers on it as it did when he was 7 years old. So he pulled up the results and looked them over. I did tell him that he had no signs of pulmonary hypertension but if things are they way they are going to be then it is only a matter of time before it comes back. He did agree with me and said that oxygen was a good thing. Rhett was not happy to hear that but he has always wanted to be off oxygen since he was placed on it. So he looked Rhett over and I had asked for so much information that he was soon rendered speechless. :) I am super good at that. Well after he did look over Rhett he determined that before the next surgery they want to get a CT scan and that way they can get the lung volume to see what is going on. So he has a CT scheduled in March and a surgery in April. I am going to ask the doctors to do a CT scan either in May or June to see if they the surgeries are working. Oh well just one day at a time.
This whole thing has been a roller coaster ride and I wish that I could make life easier for my family as we are riding the roller coaster. I felt really bad that I have no place to have the kids play. It isn't like Rhett and Dylan can go outside and actually play. Now that it is getting cold they are kinda stuck for the most part inside because they have a hard time regulating their body temperatures. It makes me feel like I am not a very good parent because I cannot give my children things that they could use as they go through a hard time in their live. I know that if I was able to have my business up and going more then it is now then it would be different. It is all in the Lord's hands, but I am going to do all that he asks me to do anyway.
He asked me what was going on and when I told him that his lungs haven't grown in 3 years he asked who said that and I let him know that the pulmonologist gave me that information. He asked if they said that and I said y es and asked me how come they said that and told him that the PFT(pulmonary function test) had the same numbers on it as it did when he was 7 years old. So he pulled up the results and looked them over. I did tell him that he had no signs of pulmonary hypertension but if things are they way they are going to be then it is only a matter of time before it comes back. He did agree with me and said that oxygen was a good thing. Rhett was not happy to hear that but he has always wanted to be off oxygen since he was placed on it. So he looked Rhett over and I had asked for so much information that he was soon rendered speechless. :) I am super good at that. Well after he did look over Rhett he determined that before the next surgery they want to get a CT scan and that way they can get the lung volume to see what is going on. So he has a CT scheduled in March and a surgery in April. I am going to ask the doctors to do a CT scan either in May or June to see if they the surgeries are working. Oh well just one day at a time.
This whole thing has been a roller coaster ride and I wish that I could make life easier for my family as we are riding the roller coaster. I felt really bad that I have no place to have the kids play. It isn't like Rhett and Dylan can go outside and actually play. Now that it is getting cold they are kinda stuck for the most part inside because they have a hard time regulating their body temperatures. It makes me feel like I am not a very good parent because I cannot give my children things that they could use as they go through a hard time in their live. I know that if I was able to have my business up and going more then it is now then it would be different. It is all in the Lord's hands, but I am going to do all that he asks me to do anyway.
Sunday, November 8, 2009
Getting over it.
Well after staying awake all night cleaning my kitchen and dining room and they are not completely clean. :( I wonder why it is me doing all the cleaning? I have to do it because I feel like if I don't it won't get done. I am having so much over my house being messy it is already interfering with my sleep and life. I feel like I can't let the kids play because my house is a mess. I also feel like no one from the state should come over to work with Dylan, but they do anyways. From the nasty bugs that are starting to increase in my house I pray that the state will not take my kids from me. To top it all off I have been stressing about money because I have not had the time to work on my business as much as I want, and then I find out that my husband is making over $2000 less than what I thought! Oh man!! How are we ever going to make sure our kids get the things that they need. I love my family so much and I think going through all this is so hard on me that my mask is glued to my face. If you didn't know me I could so make it look like everything is fine in life and you wouldn't even know that anything was wrong. How frustrating is that?
I feel bad that Rhett's oxygen catches on all the wall and stuff left everywhere. He gets so frustrated pulling on his oxygen cord, but then there is no place to put anything and when I put it away it usually falls out of place etc... It is hard he really wants to come off the oxygen and even asked me when he could come off of it and I had to tall him that his lungs have not grown in 3 years so I am not sure if he will ever come off the oxygen. He has decided that he doesn't like wearing his by-pap and is sleeping on the floor because climbing to his bed is too much for him. So at least he still has his oxygen on but if it doesn't help him any then pray tell why is he wearing it anyway? all he wants to do lately is play video games, I know what you are thinking so do all 10 year old boys. :) Oh well nothing I can do about that. I have thought about taking him out of school to help prevent getting the swine flu but I am not sure I would want to fight with him all day about video games. We will be seeing the orthopedic surgeon on Tuesday and maybe the test will soon start and if they don't I will have more answers than I do now. Can't wait to see them and give them a piece of my mind because I am not happy that they sent him home without finding out what was wrong after surgery. I hope he knows that I love him I tell him several times a day.
Nikole is doing great! Even though she cut her hair(at least her school pictures were taken before that) and you can so tell that she did, she is enjoying drawing and coloring and playing and reading. I am not sure what she doesn't enjoy. She is a sweet child and I wish that I could give her a sister since that is what she really wants. I feel like I really need to get Nikole into swimming since she really love that, a child after my own heart! If I could have the pool that I could swim in and teach the kids in that would be awesome but that pool cost over $20000! I know whoa that is a lot of money and that is even more when you have to use all the money you have to pay medical bills. But Nikole does need some sports and club and groups of people in her life right now but we can't at the moment. I am not sure what to do to help her get her feelings out and not bottle them up. I fear they are hurting her having them bottled up inside of her. I hope she knows that I love her I tell her several times a day.
Gavin is learning so much! Like Nikole he is acting out in need of friends and support that he could only get from being able to do things. I would love to put him on a football team or/and a soccer team. He needs more male interaction and maybe he would stop doing somethings that make me nervous. I wish he could express his feelings more openly, but it did take Nikole some counseling in order to open up for me and let me in a little, just not enough. Maybe Gavin needs some counseling too. He is so smart!! I just wish I could help him more then I can at the moment. I honestly feel bad for him because Rhett and Nikole like to pick on him frequently and there is nothing that I haven't tried to help solve that problem. Hope he knows that I love him, I tell him several times a day.
Dylan is so cute and he knows it! LOL! He is walking around like a crazy little man. It is just so dang cute because he is like only 2 feet tall and walking. He doesn't have any real language but I have been trying to sign with him and get him to sign back. He is just not doing it. :( He has got some great expressions but you can never know what he wants unless he throws a fit of cries or something like that. I hope he is starting to understand what I am telling him. I sign and speak at the same time. I am grateful for a great doctor and that he is drinking again and maybe he will put some weight back on since fully clothed he only weighted 19 lbs. 7 oz. I know not that much, but maybe we can get him back to at least 20 lbs. :) I am happy that he is feeling better and eating again. He had me really worried, but I guess the Lord wants him with our family a little longer, which I am truly grateful for. He is getting many different people out to our house for therapy every month. I know that when he is 3 he will be going to preschool at USDB and that will be exciting. I have been thinking of sending Rhett back so that he can pick up signing again so that way Dylan has someone to talk to other than me.
We will see how everything turns out since I only can go one day at a time. My family means the world to me! I have no idea where I would be with out my family and friends and all the support that I get from people. Living life the way I have to can be very hard but because of the support it is possible. My family is amazing!!
I feel bad that Rhett's oxygen catches on all the wall and stuff left everywhere. He gets so frustrated pulling on his oxygen cord, but then there is no place to put anything and when I put it away it usually falls out of place etc... It is hard he really wants to come off the oxygen and even asked me when he could come off of it and I had to tall him that his lungs have not grown in 3 years so I am not sure if he will ever come off the oxygen. He has decided that he doesn't like wearing his by-pap and is sleeping on the floor because climbing to his bed is too much for him. So at least he still has his oxygen on but if it doesn't help him any then pray tell why is he wearing it anyway? all he wants to do lately is play video games, I know what you are thinking so do all 10 year old boys. :) Oh well nothing I can do about that. I have thought about taking him out of school to help prevent getting the swine flu but I am not sure I would want to fight with him all day about video games. We will be seeing the orthopedic surgeon on Tuesday and maybe the test will soon start and if they don't I will have more answers than I do now. Can't wait to see them and give them a piece of my mind because I am not happy that they sent him home without finding out what was wrong after surgery. I hope he knows that I love him I tell him several times a day.
Nikole is doing great! Even though she cut her hair(at least her school pictures were taken before that) and you can so tell that she did, she is enjoying drawing and coloring and playing and reading. I am not sure what she doesn't enjoy. She is a sweet child and I wish that I could give her a sister since that is what she really wants. I feel like I really need to get Nikole into swimming since she really love that, a child after my own heart! If I could have the pool that I could swim in and teach the kids in that would be awesome but that pool cost over $20000! I know whoa that is a lot of money and that is even more when you have to use all the money you have to pay medical bills. But Nikole does need some sports and club and groups of people in her life right now but we can't at the moment. I am not sure what to do to help her get her feelings out and not bottle them up. I fear they are hurting her having them bottled up inside of her. I hope she knows that I love her I tell her several times a day.
Gavin is learning so much! Like Nikole he is acting out in need of friends and support that he could only get from being able to do things. I would love to put him on a football team or/and a soccer team. He needs more male interaction and maybe he would stop doing somethings that make me nervous. I wish he could express his feelings more openly, but it did take Nikole some counseling in order to open up for me and let me in a little, just not enough. Maybe Gavin needs some counseling too. He is so smart!! I just wish I could help him more then I can at the moment. I honestly feel bad for him because Rhett and Nikole like to pick on him frequently and there is nothing that I haven't tried to help solve that problem. Hope he knows that I love him, I tell him several times a day.
Dylan is so cute and he knows it! LOL! He is walking around like a crazy little man. It is just so dang cute because he is like only 2 feet tall and walking. He doesn't have any real language but I have been trying to sign with him and get him to sign back. He is just not doing it. :( He has got some great expressions but you can never know what he wants unless he throws a fit of cries or something like that. I hope he is starting to understand what I am telling him. I sign and speak at the same time. I am grateful for a great doctor and that he is drinking again and maybe he will put some weight back on since fully clothed he only weighted 19 lbs. 7 oz. I know not that much, but maybe we can get him back to at least 20 lbs. :) I am happy that he is feeling better and eating again. He had me really worried, but I guess the Lord wants him with our family a little longer, which I am truly grateful for. He is getting many different people out to our house for therapy every month. I know that when he is 3 he will be going to preschool at USDB and that will be exciting. I have been thinking of sending Rhett back so that he can pick up signing again so that way Dylan has someone to talk to other than me.
We will see how everything turns out since I only can go one day at a time. My family means the world to me! I have no idea where I would be with out my family and friends and all the support that I get from people. Living life the way I have to can be very hard but because of the support it is possible. My family is amazing!!
Friday, November 6, 2009
Lovely!
So I am happy to report that Dylan doesn't need IV fluid! I know I was very happy to hear I didn't need to take him to the ER. Oh the down side is he is very clingy. I try to get stuff done but I feel like I can't get on top of anything. I am so very stressed and that is not easy to do. But the weird part is I am stressed because my house is the way that it is. IT is hard for me to keep pulling late nights then having to get up early and stuff. I was really glad that Jaren got all the kids up and going this week because i am still trying to recover from no sleep in the hospital, but my body can't seem to relax because my house is a mess. :( Bummer! No wonder that I am crashing meaning falling asleep in the middle of something. I am not getting the rest that I need. I have no way of changing that until my house gets clean and organized because I just can't handle it. Wish me luck since my goal is to go to bed before 4 am. :) Guess I better get started.
Tuesday, November 3, 2009
Finally Home!
Dylan has made it out of the hospital and we are home. They discharged him today around 4 pm. We got home and was able to enjoy the family being together before they all went to bed. When I can think straight I will post photos of all the kids playing like the good kids they are.
On the home front
Watching brother and sister at the Halloween parade was my cute Darth Vader and his friend.
My sweet Pippi Longstocking at the Halloween parade.
The Halloween parade my little Yoda.
Well since I have been at the hospital trying to get Dylan better so he can come home, my other children have been in care of others. I can honestly say that I have no clue other than parents and friends and spouse, but I could totally be wrong too.
Since I haven't been there it has been giving me stress to the point of crying at nights because I miss all my other children too and it makes me nervous having them go from place to place. I hope life isn't too unstable for my little ones right now.
We missed SEPs and will make them up as soon as we get Dylan home for the hospital. As far as I know Rhett is doing well, but has been slightly slacking in school work. Nikole is doing awesome and going into a 3rd grade ELP class called Discovery for a little while. Gavin I hope is doing well and isn't getting into too much trouble at school.
I was sad that I missed the Halloween Parade at school and I know that Nikole was really sad that I missed it also. But she was really sad that Dylan had missed it too. She misses us dearly and she has cried on the phone to me more than once wishing that Dylan and I can come home right NOW. Well since that cannot be it make me feel stressed that Dylan isn't doing as well as I know he can do. But I did have someone come give him a blessing on Sunday when they brought around that sacrament and I know that everything is in the Lord's hands it just isn't what we would like at the moment.
Jaren brought the kids to have dinner with me in the cafeteria on Sunday and it was so great to see the kids that I have not seen for 5 days. Then I noticed that Nikole had cut her hair right in front and it was not good. Well she told me that she cut it because she was out of her mind and just had to cut it. I told her that she is not allowed to use scissors because she cuts things that are not hers to cut and she cuts things without asking first. Thankfully my mom was getting her hair done Monday after school and was able to take her and have Melanie try to make it not so obvious that she had cut her hair.
Honestly I have no clue what I would do without my parents. They have been a huge support and I know that they love me and my family immeasurably. I hope that they know how much they mean to me. They have been a blessing from the start and there is no way that I could ever repay them for all that they have done for me. I love you mom and dad!!
My sweet Pippi Longstocking at the Halloween parade.
The Halloween parade my little Yoda.
Well since I have been at the hospital trying to get Dylan better so he can come home, my other children have been in care of others. I can honestly say that I have no clue other than parents and friends and spouse, but I could totally be wrong too.
Since I haven't been there it has been giving me stress to the point of crying at nights because I miss all my other children too and it makes me nervous having them go from place to place. I hope life isn't too unstable for my little ones right now.
We missed SEPs and will make them up as soon as we get Dylan home for the hospital. As far as I know Rhett is doing well, but has been slightly slacking in school work. Nikole is doing awesome and going into a 3rd grade ELP class called Discovery for a little while. Gavin I hope is doing well and isn't getting into too much trouble at school.
I was sad that I missed the Halloween Parade at school and I know that Nikole was really sad that I missed it also. But she was really sad that Dylan had missed it too. She misses us dearly and she has cried on the phone to me more than once wishing that Dylan and I can come home right NOW. Well since that cannot be it make me feel stressed that Dylan isn't doing as well as I know he can do. But I did have someone come give him a blessing on Sunday when they brought around that sacrament and I know that everything is in the Lord's hands it just isn't what we would like at the moment.
Jaren brought the kids to have dinner with me in the cafeteria on Sunday and it was so great to see the kids that I have not seen for 5 days. Then I noticed that Nikole had cut her hair right in front and it was not good. Well she told me that she cut it because she was out of her mind and just had to cut it. I told her that she is not allowed to use scissors because she cuts things that are not hers to cut and she cuts things without asking first. Thankfully my mom was getting her hair done Monday after school and was able to take her and have Melanie try to make it not so obvious that she had cut her hair.
Honestly I have no clue what I would do without my parents. They have been a huge support and I know that they love me and my family immeasurably. I hope that they know how much they mean to me. They have been a blessing from the start and there is no way that I could ever repay them for all that they have done for me. I love you mom and dad!!
Update on the Hospital stay
My fuzzy Panda Bear in the PICU. Wishes he could be home.
Well Dylan was worked off the By-pap by the end of Wednesday night and then as soon as he was off he spiked a fever. Oh man what I thought was bad was just getting worse. They did all sorts of tests and found out that he had Influenza Type A, which I was told was just a flu but in most cases the secondary test usually say that it is H1N1. Well his test results finally came back and he did in fact have H1N1. :( My little baby was frying up just like his sister did almost 2 week before. We couldn't give him anything except Tylenol, because of the surgery he had. So we were giving him Lora-tab and Tylenol every so often but even all that his fever still raged on. This whole time we had been in the ICU and we had to be isolated and everything. It was so not fun. They keep a close eye on his left lung and so they had taken a few x-rays to make sure his lungs were getting better. Come to find out that he had pneumonia also. Can things possibly get any worse? well we were finally moved out of ICU on Saturday October 31st to the floor. :) Yeah that means we are a few steps closer to going home. So now he is not drinking so his output is really bad. They had to finally stick in with a IV after a few days without one since his IV's go bad so easy. The only place that they could find was in his head, because he is so hard to place an IV in. Well after 12 oz. of fluid on top of what he has been drinking his output is still really really really bad and his IV won't flush so I am not sure what they are going to do but I do know that if he doesn't drink we can't go home. He has got to keep himself hydrated in order to stay out if the hospital, but I am not sure if he know that. He finally had a little over 8 oz. by mouth which is great! That is a whole heck of a lot better then he was doing. I am glad that he didn't throw up yesterday since he has been doing that lately. I just hope that we can go home before too long I miss my other children also and I know that they miss us too.
This was Wednesday evening. He had just came off of the by-pap and this was right before the fever.
Well Dylan was worked off the By-pap by the end of Wednesday night and then as soon as he was off he spiked a fever. Oh man what I thought was bad was just getting worse. They did all sorts of tests and found out that he had Influenza Type A, which I was told was just a flu but in most cases the secondary test usually say that it is H1N1. Well his test results finally came back and he did in fact have H1N1. :( My little baby was frying up just like his sister did almost 2 week before. We couldn't give him anything except Tylenol, because of the surgery he had. So we were giving him Lora-tab and Tylenol every so often but even all that his fever still raged on. This whole time we had been in the ICU and we had to be isolated and everything. It was so not fun. They keep a close eye on his left lung and so they had taken a few x-rays to make sure his lungs were getting better. Come to find out that he had pneumonia also. Can things possibly get any worse? well we were finally moved out of ICU on Saturday October 31st to the floor. :) Yeah that means we are a few steps closer to going home. So now he is not drinking so his output is really bad. They had to finally stick in with a IV after a few days without one since his IV's go bad so easy. The only place that they could find was in his head, because he is so hard to place an IV in. Well after 12 oz. of fluid on top of what he has been drinking his output is still really really really bad and his IV won't flush so I am not sure what they are going to do but I do know that if he doesn't drink we can't go home. He has got to keep himself hydrated in order to stay out if the hospital, but I am not sure if he know that. He finally had a little over 8 oz. by mouth which is great! That is a whole heck of a lot better then he was doing. I am glad that he didn't throw up yesterday since he has been doing that lately. I just hope that we can go home before too long I miss my other children also and I know that they miss us too.
This was Wednesday evening. He had just came off of the by-pap and this was right before the fever.
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