A sad new day..
Today is my last day before going back to work... to say I am sad is a grave understatement! I can't even think about leaving him tomorrow without tearing up. I am not looking forward to work... I know I will have twenty people in my office commenting about "was it hard to leave this morning?"," aren't you glad you're back?"- I just don't have the energy or the ability to withhold sarcastic comments very long! I know he is in good hands with grandma Gina- but I still am dreading the day, and every one to follow it!
On a more positive note, we seem to have finally found a good bedtime rhythm. He gets pretty cranky at night- crying through most of his night feed and then fighting to fall asleep- but lately he has been asleep by eight and will stay asleep until about one or two when he is up and needing changed, then back to bed until 4:30 or 5-ish. I am trying to monitor the amount of time he gets cranky and see if there is a correlation between the time he feeds or just a time of day. The speech therapists mentioned that he may eventually need a feeding pump and that it may solve the crying problem if it is being caused by discomfort for him or just his inability to stay calm long enough to get his night feed done.
I have been doing alot more research into G-tubes and awareness, I found the Feeding TUbe Awareness Organization- and they have SO MUCH good information. The Facebook page has been wonderful in reading what other parents are going through and just as a resource in general. I found out that they make "button" covers, or "Whoobies"- they are little embroidered patches that fit around his tube to help prevent granulation.
Granulation is the build-up of skin around his tube. It is the bodies natural response to the hole they put in him, and while it is normal- it can get uncomfortable for him and lead to infection. Previously, I was just using gauze pads that had slits cut in them to place under his tube and help keep it from moving too much and to control the extra fluid that leaks out. They don't stay on that well and I go through SO MANY! I read that the granulation gets worse when the tube has more wiggle room, and since our little caterpillar likes to wiggle- I now understand why I was seeing the extra skin form all of a sudden. At his next doctors appointment they will probably use silver nitrate to disintegrate it (they used it before when his belly button wasn't healing after his cord fell off- painless to him) or prescribe a steroid cream (which I read can cause hair to grow near the site, so I am hoping the nitrate takes care of it!). These new buttons are supposed to help keep granulation away and break down what is already there... plus they are WAY cuter than the gauze.
He seems to like them, and I like that they make his site look less foreign. While daddy and I know that there is nothing "wrong" with him, it makes me feel better about people seeing him... he doesn't seem as sickly or scary- of which he is neither! My mother and friend Erin have also decided to use him for their "Have a Heart Do Your Part" Radiothon inspiration through WKDD and Akron Children's Hospital. I am also going to put out a jar at work and have my mom make some cupcake buddies to sell for donations. I never ever thought that we would have gone through what we did- but I can say that the care and support we received at Children's was amazing. Even after being home the outpatient visits have been nothing short of wonderful. Doctors listen, therapists help and explain everything- Caden has quite a road ahead of him, and while my mommy senses tell me his tube will be around for a while (probably at least until he gets another sibling)- I feel much better knowing I have such a great support system behind me!
On a more positive note, we seem to have finally found a good bedtime rhythm. He gets pretty cranky at night- crying through most of his night feed and then fighting to fall asleep- but lately he has been asleep by eight and will stay asleep until about one or two when he is up and needing changed, then back to bed until 4:30 or 5-ish. I am trying to monitor the amount of time he gets cranky and see if there is a correlation between the time he feeds or just a time of day. The speech therapists mentioned that he may eventually need a feeding pump and that it may solve the crying problem if it is being caused by discomfort for him or just his inability to stay calm long enough to get his night feed done.
I have been doing alot more research into G-tubes and awareness, I found the Feeding TUbe Awareness Organization- and they have SO MUCH good information. The Facebook page has been wonderful in reading what other parents are going through and just as a resource in general. I found out that they make "button" covers, or "Whoobies"- they are little embroidered patches that fit around his tube to help prevent granulation.
Granulation is the build-up of skin around his tube. It is the bodies natural response to the hole they put in him, and while it is normal- it can get uncomfortable for him and lead to infection. Previously, I was just using gauze pads that had slits cut in them to place under his tube and help keep it from moving too much and to control the extra fluid that leaks out. They don't stay on that well and I go through SO MANY! I read that the granulation gets worse when the tube has more wiggle room, and since our little caterpillar likes to wiggle- I now understand why I was seeing the extra skin form all of a sudden. At his next doctors appointment they will probably use silver nitrate to disintegrate it (they used it before when his belly button wasn't healing after his cord fell off- painless to him) or prescribe a steroid cream (which I read can cause hair to grow near the site, so I am hoping the nitrate takes care of it!). These new buttons are supposed to help keep granulation away and break down what is already there... plus they are WAY cuter than the gauze.
He seems to like them, and I like that they make his site look less foreign. While daddy and I know that there is nothing "wrong" with him, it makes me feel better about people seeing him... he doesn't seem as sickly or scary- of which he is neither! My mother and friend Erin have also decided to use him for their "Have a Heart Do Your Part" Radiothon inspiration through WKDD and Akron Children's Hospital. I am also going to put out a jar at work and have my mom make some cupcake buddies to sell for donations. I never ever thought that we would have gone through what we did- but I can say that the care and support we received at Children's was amazing. Even after being home the outpatient visits have been nothing short of wonderful. Doctors listen, therapists help and explain everything- Caden has quite a road ahead of him, and while my mommy senses tell me his tube will be around for a while (probably at least until he gets another sibling)- I feel much better knowing I have such a great support system behind me!
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