Tuesday, March 4, 2014
Winter Has Been Rough
Since Ben started going to school a full day, the cold and flu season has been very rough on him. He catches bugs easily because his trach is an open airway directly to his lungs. And when he gets anything, he gets extremely sick because he has chronic lung disease, is considered failure to thrive because of his low body weight, spends most of his time on his back and doesn't walk. Keeping him out of the hospital with every bug is a struggle. We have almost everything at home that a hospital has with the exception of a cough assist machine and if he needed to get an IV for fluids. So far this winter has been especially bad. It seems Ben has been sick on and off since November with about a week in between illnesses. We have debating keeping him out of school from Nov-March for health reasons, but for now haven't gone that route because school is such an enjoyable experience for him. He is just getting over a stomach bug now and we are praying this is the last illness for him this season.
Learning Sign Language
What this mom is trying to do for those deaf is FANTASTIC! She also happens to be the mother of a little girl with CHARGE Syndrome who is deaf and has a trach (just like Ben). I encourage everyone to learn a few basic signs as well. You don't have to know many or be perfect at doing them, just attempting to communicate can make this world a little less lonely for people like my son. Here is a link with video clips of some basic words.
http://www.start-american-sign-language.com/basic-words-in-sign-language.html
And watch the video below too - it is GREAT!
http://vimeo.com/87797329
http://www.start-american-sign-language.com/basic-words-in-sign-language.html
And watch the video below too - it is GREAT!
http://vimeo.com/87797329
Wednesday, October 2, 2013
2nd Grade off to a good start
Ben's school year has been going well. The same nurse is attending with him and he also has the same interpreter. Both people have been wonderful to him and he enjoys their company. I have been very pleased with his homeroom teacher this year too. Although his Resource Room teacher has been on maternity leave since the start of the school year, there has been a long term sub and Ben doesn't seem to mind her. He is once again riding the bus and we are still working out some of the kinks with that.
We recently changed the food Ben is getting through his gtube and the times he is getting it. This is the first time in his life he is eating something other than formula. It is very exciting and I was very nervous to make the change. It was something we really felt we needed to try though because his growth has been unchanged for such a long time. He is actually only 5 lbs heavier than he was at 3 years old and is now 8. He is getting something called a blended diet now. The base of his food is his formula and to that we are adding:
Rice cereal
Olive oil
Stage 1 or 2 baby food meat
Stage 1 or 2 baby food yellow or green fruit or vegetable
Stage 1 or 2 baby food orange fruit or vegetable
It makes a really thick mixture that we use a syringe to plunge into his belly instead of letting gravity take it in like before. He gets weighed this Friday and I am hopeful he has gained some weight being on this diet for almost one month now. He doesn't seem as gaggy on this food and does seem to have more energy. He has to feel better having some substance in him now.
We recently changed the food Ben is getting through his gtube and the times he is getting it. This is the first time in his life he is eating something other than formula. It is very exciting and I was very nervous to make the change. It was something we really felt we needed to try though because his growth has been unchanged for such a long time. He is actually only 5 lbs heavier than he was at 3 years old and is now 8. He is getting something called a blended diet now. The base of his food is his formula and to that we are adding:
Rice cereal
Olive oil
Stage 1 or 2 baby food meat
Stage 1 or 2 baby food yellow or green fruit or vegetable
Stage 1 or 2 baby food orange fruit or vegetable
It makes a really thick mixture that we use a syringe to plunge into his belly instead of letting gravity take it in like before. He gets weighed this Friday and I am hopeful he has gained some weight being on this diet for almost one month now. He doesn't seem as gaggy on this food and does seem to have more energy. He has to feel better having some substance in him now.
Wednesday, August 21, 2013
Friday, August 9, 2013
Celebrating being 8
The highlight of Ben's birthday {for us and Ben} was the smearing of buttercream frosting all over his face. Since he can't eat anything by mouth, this was what he felt was the best use of his birthday cake.
Friday, July 12, 2013
The Trach - Love it and hate it
After learning that Ben isn't a candidate for airway reconstruction because of his anatomy and that he will have his trach for life it has really given me some time to reflect on life with a trach...probably more related to kids that have other medical issues on top of the trach than typical kids with one. I have figured out that I really have a love/hate relation with the trach.
The trach has given us Ben and the ability to bring him home. I love it for that reason and will always be grateful. Without a trach, we know that he wouldn't be here. And I cant imagine life without Ben in it. But at the same time, I hate what all goes with having trach... for him and for us. I decided to write this to let people know how different life is when your child has medical issues and a trach. So many people have no idea and I was one of those people before we ventured down this path. After seven years of living this life, I felt it was time to share. I hope this doesn't come across as me whining or complaining, because that is not my intention. I simply want to share our life and the obstacles Ben/we face because of the trach.
Ben needs a trained caregiver at all times, even when sleeping. Because of this, we have/use home care nursing. Nursing has its goods and bads. Good- Allows us the opportunity to sleep at night. Ben can attend a typical school (even though it is in a special ed classroom) because he has a nurse that can go with him. It is nice having help during the day so I can do household chores, help taking Ben to therapy/doctor's appointments since he requires someone sitting in the back with him to suction when traveling, etc. Bad- Not all nurses are good. Actually, we have come across more bad nurses than good so when we find a good one we try all we can to keep them. Nurses have their own lives too and will help when they can but you can't rely on that to make your own plans. I miss having our house to ourselves. Nurses come and go and that is hard on Ben. He never know when a nurse is off or isn't going to be back ever. The turnaround in home care nursing is really high.
Ben can't be left alone at all, ever because of the trach. This is hard on us and Ben. We have finally gotten to the point where we feel comfortable listening and watching him via a video monitor so he feels like he is alone playing and someone isn't watching him 24-7.
I am very envious of those moms who can take their kids somewhere by themselves. I dream of doing this one day. And maybe as he gets older, needs less suctioning and stops pulling out his trach, I will be able to. I have advanced to be able to drive him around the city we live in by myself because I know the roads/traffic well, know where I can pull off, etc. The highway is a different story!
So much of Ben's care takes two people. Difficult always needing someones help. And the care of a trach, feeding tube, bowel plans, etc is in addition to that typical care a child receives.
You get very little privacy when you have nursing in your home and your nurses need orders from a doctor to do ANYTHING. Feels like you don't have say if your child's care. Also, because Ben received state funded aid for his care, they also have to approve everything and am monitoring how we care for him.
Having a special needs child who signs with a trach limits who can watch him when you and your husband want to go out. Because of this, we rarely get to do things together. I am lucky that my mom can watch him in addition to a nurse, but those occasions are few and far between. And having someone other than me around is hard on Ben because so many of his signs are difficult to understand.
The constant worry of a plug, trach coming out and not being able to put back in, someone tripping while caring him, him getting sick and winding up in the hospital or even us getting sick and unable to care for him wears on you.
I also worry about Ben's future - what is going to happen when we get older and what would happen to Ben if/when something happens to us (especially since Ben is an only child). I try not to think about this much but it pushes its way to the front of my mind more than I would like.
And last but not least, my heart hurts for Ben and the fact that he doesn't have any friends. He is rarely invited to a party, he doesn't do play dates and all of his time is spent with adults. He gets so excited when kids are around but most kids are scared of him and won't let him get close and touch them (which is all he wants to do because he is so excited). I love that he has some friends at school and am thankful for that but wish he had more opportunities to be around other kids.
The trach has given us Ben and the ability to bring him home. I love it for that reason and will always be grateful. Without a trach, we know that he wouldn't be here. And I cant imagine life without Ben in it. But at the same time, I hate what all goes with having trach... for him and for us. I decided to write this to let people know how different life is when your child has medical issues and a trach. So many people have no idea and I was one of those people before we ventured down this path. After seven years of living this life, I felt it was time to share. I hope this doesn't come across as me whining or complaining, because that is not my intention. I simply want to share our life and the obstacles Ben/we face because of the trach.
Ben needs a trained caregiver at all times, even when sleeping. Because of this, we have/use home care nursing. Nursing has its goods and bads. Good- Allows us the opportunity to sleep at night. Ben can attend a typical school (even though it is in a special ed classroom) because he has a nurse that can go with him. It is nice having help during the day so I can do household chores, help taking Ben to therapy/doctor's appointments since he requires someone sitting in the back with him to suction when traveling, etc. Bad- Not all nurses are good. Actually, we have come across more bad nurses than good so when we find a good one we try all we can to keep them. Nurses have their own lives too and will help when they can but you can't rely on that to make your own plans. I miss having our house to ourselves. Nurses come and go and that is hard on Ben. He never know when a nurse is off or isn't going to be back ever. The turnaround in home care nursing is really high.
Ben can't be left alone at all, ever because of the trach. This is hard on us and Ben. We have finally gotten to the point where we feel comfortable listening and watching him via a video monitor so he feels like he is alone playing and someone isn't watching him 24-7.
I am very envious of those moms who can take their kids somewhere by themselves. I dream of doing this one day. And maybe as he gets older, needs less suctioning and stops pulling out his trach, I will be able to. I have advanced to be able to drive him around the city we live in by myself because I know the roads/traffic well, know where I can pull off, etc. The highway is a different story!
So much of Ben's care takes two people. Difficult always needing someones help. And the care of a trach, feeding tube, bowel plans, etc is in addition to that typical care a child receives.
You get very little privacy when you have nursing in your home and your nurses need orders from a doctor to do ANYTHING. Feels like you don't have say if your child's care. Also, because Ben received state funded aid for his care, they also have to approve everything and am monitoring how we care for him.
Having a special needs child who signs with a trach limits who can watch him when you and your husband want to go out. Because of this, we rarely get to do things together. I am lucky that my mom can watch him in addition to a nurse, but those occasions are few and far between. And having someone other than me around is hard on Ben because so many of his signs are difficult to understand.
The constant worry of a plug, trach coming out and not being able to put back in, someone tripping while caring him, him getting sick and winding up in the hospital or even us getting sick and unable to care for him wears on you.
I also worry about Ben's future - what is going to happen when we get older and what would happen to Ben if/when something happens to us (especially since Ben is an only child). I try not to think about this much but it pushes its way to the front of my mind more than I would like.
And last but not least, my heart hurts for Ben and the fact that he doesn't have any friends. He is rarely invited to a party, he doesn't do play dates and all of his time is spent with adults. He gets so excited when kids are around but most kids are scared of him and won't let him get close and touch them (which is all he wants to do because he is so excited). I love that he has some friends at school and am thankful for that but wish he had more opportunities to be around other kids.
Ben's new bed
I have been wanting to get Ben a new bed for some time and we decided it would be his birthday gift this year. He was in a toddler bed that we modified so he couldn't fall out. But the mattress he used was his original crib mattress and I felt like it wasn't very comfortable for him. Not to mention, I figured he would love some extra room. After some searching and figuring out details, we landed on a junior loft bed. Went this route instead of the custom made medical beds because 1.) I couldn't justify the $10,000 price tag those beds cost even if insurance would pay for it 2.) This gave him all the floor space under his bed to play since his room wouldn't have much with the bigger bed 3.) We could add a little rail over the open space for the ladder and wouldn't have to do anything else to ensure he was safe from falling out 4.) Easier on our backs doing Ben's care than a typical bed. The bed came yesterday and with a few minor tweaks , we made it work for Ben. He has been loving it so much so that he hasn't wanted out of bed since it has been put together.
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