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WELCOME, GUEST |
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(2 members)
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Arnara6 |
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mom2bubu6 |
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KYLE
katestclair |
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| Category: Home | Sun | Mon | Tue | Wed | Thu | Fri | Sat | | 1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 | 11 | 12 | 13 | 14 | 15 | | 17 | 18 | 19 | 20 | 21 | 22 | 23 | 24 | 25 | 26 | 27 | 28 | 29 | 30 | 31 |
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VERY LONG OVERDUE UPDATE
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Jan 10, 2010 06:56pm (EST)
Oh, I'm not even sure where to start...an apology... really in 4 years I've never gone this long in between updates. It's been a pretty bad 2 months..horrible really...I'm going to give you the facts...otherwise we'd be here all night.
At this point Kyle is completely TPN dependant, he is not able to take anything into his stomach. We've spent pretty much the last 2 months in the hospital, fighting line infection after line infection. Life for Kyle has been horribly rough. It's been hard on all of us. I think the hardest is watching our sweet boy decline and not be able to do anything about it. At this point we've exhausted Boston and are now looking into two hospitals much further away. We meet this week to make that final choice and we hope to be there and seeing dr's in the next few weeks. His pain levels are high and we have had trouble managing that at home, for the past two weeks he's been morphine dependant and even that wasn't always covering the pain. We are home right now and it's been amazing. Hard to juggle Kyle's new schedule and we are constantly worried about fevers. But are new motto is to Live for today..we keep trying to do that.
I'm not sure why I havn't posted...mentally I can say I havn't been the best...my frustration and heartache is at an all time high. I can't believe after 5 years we are still here....I'm worried...scared for him and for us. It's taking a toll on the other two kids...they are so brave, kind and generous..but they are small children...it's so confusing for them.
I promise to update more and be around...
xoxo
Kate
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Posted by katestclair | Comments: (25) | Permalink
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BOSTON
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Nov 22, 2009 06:11am (EST)
We head to Childrens on Tuesday, we are happy to be moving forward but a little sad since we'll miss Thanksgiving with the other two kids.
Kyle will be admitted Tuesday and he will have a very in depth scope on Wednesday. Surgery times and dates will be scheduled after the scope is done. So we are not really sure when we'll be home which has made things hard to plan.
I will update after his scope on Wednesday...
xo
K
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Posted by katestclair | Comments: (13) | Permalink
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HEADED TO BOSTON
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Nov 10, 2009 06:14am (EST)
We are headed to Boston to meet with the surgical team down there...we are so lucky to have some amazing friends who helped speed up this meeting. We don't have alot of time to play with and this appointment is huge. I will update tonight!! Keep your fingers crossed...I'm not totally sure what we are hoping for...a plan..I think!
xo
K
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Posted by katestclair | Comments: (13) | Permalink
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DAY 14...HE IS HOME
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Nov 07, 2009 12:03pm (EST)
Yes...he came home today. Oh my, we didn't tell the other kids for fear of hurting them again, their faces when they laid eyes on their brother was priceless...
I'm so happy, yet I know this is short lived. I know that the last two weeks are a cake walk compared to what we have to go thru over the next few months. We will be heading to Boston soon for a second opinion. The complications surrounding the next phase for Kyle are so over whelming and life changing that we need to feel like we are hearing all the options. That we are making the best choices we can for him.
I can hear him playing trains in the next room with his brother...I want to bottle that sound...his laughter....I want it to take away my fear and heartache..yet I can't shake it this time. Admittedly we are petrified of the next phase. I want to be the person that has learned to live for the day, not this person who feels full of dread. I know that as we slip back into our "new normal" I will start to become me again..I know I will.
xoxo
Kate
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Posted by katestclair | Comments: (14) | Permalink
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KYLE DAY 13
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Nov 06, 2009 06:25pm (EST)
I'm scattered tonight...sad, worried, heartbroken. I'm so very tired of holding my son down and seeing him scream...it makes me want to scream with him. We are still fighting an infection, we pulled the central line on Wednesday and placed a picc line on Thursday. Hoping to god that the infection doesn't move to the PICC line. At this point Kyle is completely TPN (IV) dependant... we have to have IV access. We are in the process of getting a second opinion on Kyle's upcoming surgery. With this being such an intense surgery it's vital we have all the info we can before we move forward. We don't have alot of time. His body is showing us he doesn't like the central line nor does it like TPN all that much.
I'm finding myself so incredibly sad....it's getting harder to stand by and watch him be in pain, it takes my breath away, makes my ache. In the blogging world you can find families like yours...others who understand you...one of those families is losing their little boy tonight. He is losing his battle and it has put me into a very bad place. It's another slap of reality...almost as violent as a kick in the gut. I try so hard to stay positive...keeping my eye on the ball....but it's so hard. Painfully hard.
I ask that you say a prayer for Gavin Owens and his sweet family. That little boys strength and courage is inspiration for so many. While we have never meet in person his Mom has provided strength, knowledge and compassion.
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Posted by katestclair | Comments: (8) | Permalink
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UPDATE, DAY 7
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Nov 01, 2009 08:41am (EST)
It's been a week now. We have been battling Kyle's central line infection. While he seemed to be responding well to the antibiotics his blood cultures kept coming back positive. On Friday they did a scope or bronchoscopy. The original plan was to go into his stomach to look at his stomach. There was a concern that maybe he had an ulcer that could have been contributing to his pain. The good news is no ulcer, the bad news is that when doing the scope the GI dr and surgeon discovered that he has surgical material embedded in his esphogous. They believe this material is from his 2nd Nissen surgery (he's had 4) and that the surgical material that was placed on the outside of his esphogous had moved thru the wall and was now on the inside. Not good at all. What they don't know is how to remove it. It may require them taking down his Nissen which isn't good. This will be fixed at the same time as his hernia in his bowels. This only further complicates and concerns all of us. We are now scheduled for a test in the am to make sure this material is not causing him further damage (it's hard to know how long it's been like this) if it seems to be he will be taken in tomorrow for emergency surgery. The hope is that this is not the case, the surgeons are very concerned about doing surgery on Kyle when he still has an active infection. We need to be 14 days without infection before we can safely do this surgery.
The really good news is that the cultures from this weekend have not grown positive. Which means we can start a 14 day countdown if by tomorrow am they are still not positive.
We are at this point still trying to process all this. We had a very sobering conversation with the surgeons on Friday and it's taking it's toll on all of us.
The goal will be to get him home and go into total lockdown mode...Both Kyle and Jack will need to be out of school. We have to keep Kyle as safe as possible from all germs, any cold at this point could be horribly bad for him.
Kate
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Posted by katestclair | Comments: (20) | Permalink
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10/28/09
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Oct 28, 2009 06:15am (EST)
I shouldn't be blogging...I should be in Disney with my family...doing things that other families do....smiling, laughing, enjoying life. Instead we are back at the hospital with Kyle...we never made it to Disney. On Sunday am Kyle woke with a 102 fever. By the time I got him to the hospital it was 104. He was admitted immediately and put into precaution. While Mark and I both knew it was another line infection we had to make sure Kyle did not have H1N1...his line has tested positive for Staph. So here we sit on IV antibiotics. There is now the ongoing debate of his surgery that was supposed to happen after Disney. Our feeling on it (and most of his dr's) is that it needs to happen ASAP. The surgeons now feel (after reviewing more scans) that the surgery itself is very high risk and they are uncomfortable doing it with him still sick. They also are concerned that the location of his bowel hernia is to close to his aorta and spine. They can not guarantee that by doing the surgery it's going to help his motility at all. His GI team is concerned that if we don't do the surgery we are risking him in many other ways. So we are headed back into testing today to hopefully get some answers that will make our decision more clear.
It has not been an easy week for any of us. I will update once a decision has been made. Kyle is responding well to the antibiotics! So that is a big blessing! Kyle turned 5 yesterday, and we tried to make it special but it was so bittersweet. It wasn't Disney.
K
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Posted by katestclair | Comments: (20) | Permalink
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10/22/09
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Oct 21, 2009 07:02pm (EST)
You know I just had the most amazing day, all day today I was surrounded by people who are fighting to stop prematurity, stop infant death, stop birth defects. I had two meetings and a conference call full of the most selfless people you would ever meet....I find myself so lucky to be surrounded by these people. Yet after both meetings I sat in my car and sobbed...oh yah full on lose my marbles sobbed. I see and interact with these people who fight like I do because they have in some way been effected by our fight. Some of who have only been effected because they love my son. That in itself is enough for them to want to help. I wonder sometimes if they know how much I appreciate and love them. Today I was struck by how much more we have to do. That even on my worst days...I can find slivers of good....glimpes of the sun....that even though we have so far to go...we are doing good one dollar, one hug, one shoulder at a time.
I know we all get tired....but thank you for always supporting me...we have some very hard days ahead but we also have some very beautiful days ahead...
We leave for Disney soon.... Can you imagine the kids faces? It's something that will be etched in my brain forever....no matter what our future holds, we will always have Disney as a family.
XOXO
K
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Posted by katestclair | Comments: (15) | Permalink
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LIFE MOVES ALONG WITH OR WITHOUT US
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Oct 17, 2009 06:16am (EST)
There are times during conversations with good friends or family that people ask me how we are, how life is with Kyle. I won't speak for Mark but I know he feels similiar at times in my response. I am (to a fault) good at smiling and nodding and saying that things are good. It is rare that I'll give you the full story. Because admitting where we really are on a certain day is to much of a reality shock for some. I find myself at times looking around at others and being sad...sad that well we feel like our world is slowly crumbling, others and I mean bill collectors, state insurance examiners, some friends and family.....are moving on with life. I feel disconnected and lonely at times. Our schedule is now so dictated by Kyle's TPN schedule, feeding schedule, pain tolerance level...that we feel so far from normal it's mind numbing. While I know people aren't pushing us away, it's hard to not still feel that way. While I used to be good at hiding it (as I mentioned earlier) my fear and anxiety for Kyle and the next few months are bubbling over. So instead of me feeling like they are all pulling away, now I feel like I am...I don't want life to continue on as normal...it's not normal. It's not ok for a little boy to be doubled over in pain from his belly....it's not ok for him to be hooked up to an IV every night, to have weekly blood draws, to be attached to a bag twice his size for 14 hours a day. It's not ok for him to get pneumonia on top of it, not ok for him to be soaked every few hours at night due to all the fluid we are pumping into his body.
Now, I know there is still so much of the "old normal" Kate inside of me, I will close with the postive...the good....we are still fighting, this is a blip on our radar, Kyle will once again survive this and beat this...we have him with us, while I will allow myself small moments of pity parties...I will not allow it to beat us...because Holland is ok, it's not what I dreamed or hoped for....but I'm still so happy to be here.
xoo
K
By Emily Perl Kingsley, 1987. All rights reserved.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
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Posted by katestclair | Comments: (21) | Permalink
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