Two more wakes up until the big day....oh my gosh, I cannot believe it!....I am beyond excited and beyond terrified at the same time. I honestly don't know how I am going to get through 4-5 hours of waiting around for Hunter's surgery to be over with. It still doesn't feel 100% real right now and that's pretty much what has gotten me this far...once we land in Cincinnati, I know it will really hit me.
This trip won't be anything like last time...no fun shopping, no eating out at The Cheesecake Factory...no Zoo's or Aquariums to keep up busy...It's all hospital, recovery, and keeping my sanity in the hospital.. It's all okay though, because the important part is what we are really there for, Hunter's surgery..
These doctors do this surgery many times a week. They are the experts, the best of the best. I know Hunter will be in the best of hands. I still don't like not having control though, once he's wheeled back into the O.R., it's out of my hands...that's the hardest thing for me.
There will be a couple of other Mom's and kids at the hospital from the trach forums I am on, (Tracheostomy.com). I hope to meet up with them if at all possible. Last trip we got to meet a sweet family, who's daughter had a trach due to vocal cord paralysis. They are from Ohio and were nice enough to meet us for dinner when we were there in March.
Please keep Hunter in your thoughts and prayers...and Jeremy and I too. We could all really use them.
Sunday, April 29, 2012
Wednesday, April 18, 2012
You will always be missed, Gram...we LOVE you!!!
So I have been meaning to post about my Gramma's passing for a while now but I just didn't want to do it...My Gramma has always had good health until recently we found out the her heart was failing and thus not pumping enough blood to keep her other organs healthy. She was 88 years old and will be missed dearly.
We were in Cincinnati, when I heard she was getting pretty bad and may not have that much time left. After coming home from our trip, I hopped on another plane to be with my Gram for a few days. I am forever thankful I got to spend a few days with her. She was still able to talk and joke somewhat but she slept most of the time. I didn't care though. It was just comforting to be near her and be in her home. Her house is truly a second home to me and always has been. I'm going to miss walking up her porch steps while she opened up her screen door to greet me with a huge hug and kiss. I can smell her scent as I'm typing this...that makes me so sad right now... I still don't think it has fully hit me that she is gone. I know it will once I return home for my next trip up to Washington. Every trip up there she's been there and I've got to stay at her house..Now I don't get to do that anymore...
I think I haven't really had time to digest it all because my mind has been so focused on Hunter and his doctors appointments and trip to Cincinnati Children's Hospital. I've had that as a distraction, but just typing this post it's definitely setting in more.
Her memorial service is this Monday the 23rd. I am not going to go. I think she would understand...besides it was more important that I got to see her before she passed.
Dear Gram,
Thank you for all you have ever done for me. I am blessed to have a Grandparent be such an important part of my life. I will never forget all the wonderful things we did together. From the fun birthday cards/gifts to going to "church" in your living room, to drinking tea down by the creek. I loved spending the night at your house and scarfing down your "best ever in the world pancakes"!
I will miss you always but I am happy that you are with people that you also love now...Grandpa, your brothers, sisters, mom and dad....I know you guys are drinking coffee and watching over the family.
Thank you for loving Hunter, I am sad he won't get to know you better but he will sure be seeing lots of pictures of you and him together when he is older. I know you are watching over him as he will be having his surgery to get his trach out in a couple of weeks.
By the way, Mom is making good on her promise to get plenty of coffee with your Mcdonalds cups...I think you have well got your money's worth out of them!
Love you Gram,
kj
We were in Cincinnati, when I heard she was getting pretty bad and may not have that much time left. After coming home from our trip, I hopped on another plane to be with my Gram for a few days. I am forever thankful I got to spend a few days with her. She was still able to talk and joke somewhat but she slept most of the time. I didn't care though. It was just comforting to be near her and be in her home. Her house is truly a second home to me and always has been. I'm going to miss walking up her porch steps while she opened up her screen door to greet me with a huge hug and kiss. I can smell her scent as I'm typing this...that makes me so sad right now... I still don't think it has fully hit me that she is gone. I know it will once I return home for my next trip up to Washington. Every trip up there she's been there and I've got to stay at her house..Now I don't get to do that anymore...
I think I haven't really had time to digest it all because my mind has been so focused on Hunter and his doctors appointments and trip to Cincinnati Children's Hospital. I've had that as a distraction, but just typing this post it's definitely setting in more.
Her memorial service is this Monday the 23rd. I am not going to go. I think she would understand...besides it was more important that I got to see her before she passed.
Dear Gram,
Thank you for all you have ever done for me. I am blessed to have a Grandparent be such an important part of my life. I will never forget all the wonderful things we did together. From the fun birthday cards/gifts to going to "church" in your living room, to drinking tea down by the creek. I loved spending the night at your house and scarfing down your "best ever in the world pancakes"!
I will miss you always but I am happy that you are with people that you also love now...Grandpa, your brothers, sisters, mom and dad....I know you guys are drinking coffee and watching over the family.
Thank you for loving Hunter, I am sad he won't get to know you better but he will sure be seeing lots of pictures of you and him together when he is older. I know you are watching over him as he will be having his surgery to get his trach out in a couple of weeks.
By the way, Mom is making good on her promise to get plenty of coffee with your Mcdonalds cups...I think you have well got your money's worth out of them!
Love you Gram,
kj
 |
| Helen Clark August 5th 1923-April 8th 2012 |
Friday, April 13, 2012
Update
So actually there is a TON to update on but I will do some news in another post. Last week of March we were in Cincinnati to see hunters new doctors there. We met with Dr. Rutter the ENT, Dr. Boesch Pulmonology, Dr. Putnam GI. They really know what they are doing there. I like that they have "seen it all" so hunters case was very routine and they assured us of their help. That's all I really wanted to hear. Our ENT locally I feel, would have just played the "let's wait and see" game with Hunter.
Dr. Rutter said he found no webbing in his airway or signs of tracheolmalacia(floppy airway). That is great because we previously were told Hunter had both. Dr. Boesch said his lungs looked great. Dr. Putnam placed an impedance probe down hunters esophagous to measure the amount of any of reflux. We are still waiting on official results back but he said all looked good from what he could see. Overall all the doctors were comfortable with going forward with surgery to fix hunters airway.
Hunter is going to have a Laryngotracheolplasty(LTP) with anterior rib graft. Basically they will take a piece of rib cartilage and use that to create a graft piece to widen the trachea. Here is a link to a very informative website about it, http://tracheostomy.com/resources/surgery/ltp1.htm.
We have scheduled Hunter's surgery for May 2nd! OMG that is so close...I thought it would be farther out than that but that's when they can do and why wait longer? I'm excited and terrified. It's a big surgery, 4-5 hours long and Hunter will be sedated and on a ventilator for up to a week or so. Then they will slowly wean him off the vent and he may or may not be sedated still depending on how still he can be...hmm toddler being still, I don't think so...The surgery has a great success rate and the extra good thing is that Hunter is otherwise healthy. So that always helps when having a big surgery done.
I *plan* on blogging daily about the surgery and what Hunter and we (Jeremy and I) are going through.
- Posted using BlogPress from my iPad
Dr. Rutter said he found no webbing in his airway or signs of tracheolmalacia(floppy airway). That is great because we previously were told Hunter had both. Dr. Boesch said his lungs looked great. Dr. Putnam placed an impedance probe down hunters esophagous to measure the amount of any of reflux. We are still waiting on official results back but he said all looked good from what he could see. Overall all the doctors were comfortable with going forward with surgery to fix hunters airway.
Hunter is going to have a Laryngotracheolplasty(LTP) with anterior rib graft. Basically they will take a piece of rib cartilage and use that to create a graft piece to widen the trachea. Here is a link to a very informative website about it, http://tracheostomy.com/resources/surgery/ltp1.htm.
We have scheduled Hunter's surgery for May 2nd! OMG that is so close...I thought it would be farther out than that but that's when they can do and why wait longer? I'm excited and terrified. It's a big surgery, 4-5 hours long and Hunter will be sedated and on a ventilator for up to a week or so. Then they will slowly wean him off the vent and he may or may not be sedated still depending on how still he can be...hmm toddler being still, I don't think so...The surgery has a great success rate and the extra good thing is that Hunter is otherwise healthy. So that always helps when having a big surgery done.
I *plan* on blogging daily about the surgery and what Hunter and we (Jeremy and I) are going through.
- Posted using BlogPress from my iPad
Tuesday, March 20, 2012
Finally!!!!!!!!!
I have some great news to announce.....Hunter was finally approved for the medically fragile medicaid waiver!!! We have been waiting for this for just over a year now, ever since Hunter got his trach.
Medicaid will cover anything our main insurance doesn't cover ie deductibles and co pays. That will be such a huge help. Also they help out with some travel expenses for when we travel out of state for Hunter's doctors.
I was beginning to wonder if Hunter would ever get approved. I couldn't be happier. For those wondering, the medically fragile medicaid waiver is a program offered for kids who don't normally qualify for just medicaid due to their parents income. They get this offered (after being on a wait list) a medicaid waiver which helps with expenses due to his tracheostomy.
I am hoping they can help out with some of the cost from this trip to Cincinnati, but since it's so close to when we leave I am not sure this trip will be covered. Either way it's okay. I'm just glad he's been approved.
Okay, I will stop doing the happy dance now..but I can't help it....
Medicaid will cover anything our main insurance doesn't cover ie deductibles and co pays. That will be such a huge help. Also they help out with some travel expenses for when we travel out of state for Hunter's doctors.
I was beginning to wonder if Hunter would ever get approved. I couldn't be happier. For those wondering, the medically fragile medicaid waiver is a program offered for kids who don't normally qualify for just medicaid due to their parents income. They get this offered (after being on a wait list) a medicaid waiver which helps with expenses due to his tracheostomy.
I am hoping they can help out with some of the cost from this trip to Cincinnati, but since it's so close to when we leave I am not sure this trip will be covered. Either way it's okay. I'm just glad he's been approved.
Okay, I will stop doing the happy dance now..but I can't help it....
Monday, March 19, 2012
Update
I have been a terrible blogger lately. I don't even have a great excuse.
We leave for Cincinnati in 4 days!! Wow..it crept up on us..I can't believe it's really here almost. My emotions are all over the place still, happy, scared, anxious etc etc. People keep saying strong I am being able to deal with all of hunter's medical needs and hospital trips etc...I don't feel strong at all. I feel far from it. But when it comes to your child, you just do whatever you have to do to help them, however hard or scary it is. We have appointments starting Monday but the bronchoscopy is Wednesday, that's when we'll get the most info. I'll be a nervous wreck.
Now, my big fear is that Hunter will get sick and then can't be looked at in the operating room. I need to stop worrying but it's hard. So I think until we leave we will be keeping Hunter indoors and away from everyone..I'm
just not willing to take any chances.
Still waiting on word if he's been approved for the Medicaid waiver...sure would be nice to get some help with co pays and deductibles. Still not holding my breath though.
I'm slowly but surely getting packed. Hunters clothes and supplies are pretty much done but still need some odds and ends.
- Posted using BlogPress from my iPad
We leave for Cincinnati in 4 days!! Wow..it crept up on us..I can't believe it's really here almost. My emotions are all over the place still, happy, scared, anxious etc etc. People keep saying strong I am being able to deal with all of hunter's medical needs and hospital trips etc...I don't feel strong at all. I feel far from it. But when it comes to your child, you just do whatever you have to do to help them, however hard or scary it is. We have appointments starting Monday but the bronchoscopy is Wednesday, that's when we'll get the most info. I'll be a nervous wreck.
Now, my big fear is that Hunter will get sick and then can't be looked at in the operating room. I need to stop worrying but it's hard. So I think until we leave we will be keeping Hunter indoors and away from everyone..I'm
just not willing to take any chances.
Still waiting on word if he's been approved for the Medicaid waiver...sure would be nice to get some help with co pays and deductibles. Still not holding my breath though.
I'm slowly but surely getting packed. Hunters clothes and supplies are pretty much done but still need some odds and ends.
- Posted using BlogPress from my iPad
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