Thursday, December 31, 2009

Hope in 2010

The last day has been a tough one for Kyle....after his transfusion last night his blood pressure and heart dropped way to low...it was a very long night of trying to battle the his pressures yet not fluid overload his lungs..add pain on top of that and it was a heartbreaking night. Around 1100 last night in the middle of a horrible pain episode he asked if I would take him home to his family...he said...please Momma...I miss my dad, my brother and my sister Alex...then he started to cry...gosh I am so tired of this. After the rough night they discovered a murmur which he's never had so he had an echo and everything looked fine. They think it was all the fluid but will continue to watch his heart closely.
I so feel positive that he was better this evening and his pressures are now normal. Which is great news! His pain and output from his tube is worse which is concerning and his belly is still distended.....we don't have any cultures back from his picc line..praying that the infection is clearing and not moving toward his picc line.

I am trying..really truly trying to stay positive and have hope. But watching him scream in pain every day is really taking a toll on all of us....the kids at home miss him so much. I feel at a loss when they ask when he's coming home.

Alex is petrified that someday he won't come home...My god, how do you answer that question...we can't promise her something we can't guarantee...yet we need to reassure her and keep her feeling safe. Kyle is so fragile...each one of these infections take more and more out of him..I just don't know anymore.

We are down..but I seriously still cling to hope..hope that 2010 will be our year...Kyle's year...

Happy New Year....
XO
K

Wednesday, December 30, 2009

Quick update

Kyle did amazing and was pretty excited when he woke up that Mimi and Papa were here for a visit. The picc line is in and they just started his transfusion....really holding out hope that this goes well and he has no reaction to it...Kyle is known for reacting to everything so we are holding our breathe that everything goes ok!

They can't run the morphine while he is getting the blood transfusion so it's going to be a long two hours...hoping we can keep him quiet and calm so that we can keep his pain issues to a minimum.

They won't even discuss a possible time to go home...seems like we have some big goals to hit before we can leave...looks like we'll be watching the snow this weekend from our big picture window at MMC... ;)

XO
K

Blood Transfusion and central line out..

Kyle is scheduled to hit the OR around noon. He also needs a blood transfusion, his hemoglobin is really low....the dr's are not sure why his levels are dropping and they are running more tests now...I can honestly say I'm not very happy about this, I have a pit in my stomach....

I need to have confidence in the team here to be making the right calls for him but I feel nervous and anxious right now.

Will update when he's out of surgery.

XO
K

Tuesday, December 29, 2009

Our sweet boy

So here is the latest....

We are losing the line, I'm still trying to wrap my head around this...the dr's feel it's for the best to get this line out...they will take him into surgery tomorrow to remove the line and then they will place a PICC line in his arm until we are sure the infection is gone...at that point they will try to place another central line...as I mentioned yesterday none of those things will be easy...we are running out of spots to put these lines.

Alex, Jack and I are sick...we've all been in bed since last night..which means I can't go near Kyle which is killing me. Mark has been at the hospital with him, and while I know he's in the best hands...I've never not been there with him for this long.

The dr's keep bringing up the mass in his esophagus, some feel like it needs to come out and others feel like it's to dangerous to remove....we are at a loss right now, I'm so worried about him. He's miserable and asking to come home. He's back on the morphine pump....he's complaining about pain alot.

I hate this feeling...

xo
K

Monday, December 28, 2009

Positive line infection

The one thing we didn't want...a line infection, worse it's one that can be hard to get rid of. Kyle's line has yeast growing from it...the hard thing is it can a stubborn one to get rid of and we may lose this line. That is very bad news, we don't have many spots left for central lines...I'm not even sure if we have any...let alone one more.
The poor kid is miserable, high temp, retching and gagging and stomach pain. His heart rate has been to high for the last 24 hours, we are trying bolus bags of IV fluid and praying this helps the heart rate...if it doesn't and if the fever stays up we won't have any choice but to pull the line before he gets very septic.

I will update later...
As always...thank you for continuing to support us...
Love
K

Sunday, December 27, 2009

and back we go

Back to the hospital that is....I can't even get into the details at this point because it's giving me a stomach ache. Kyle has a fever and tummy pain again. We have started morphine again and are hoping and praying this is not a line infection.

I will update later when we have news.....

In other news...We had an AMAZING Christmas..... :)

xoxo
K

Wednesday, December 23, 2009

Where to start

I don't even know where to start, it seems strange to feel so happy to be home yet feel so sad inside over where we are in this struggle with Kyle's health. I am trying to keep clinging to the fact that we are home, and yet knowing we'll have to go back sometime soon. Here is the latest...

We no longer have any use of Kyle's belly, his motility has as far as we can tell totally shut down, all his meds have to go thru IV...they have had to increase his TPN to 14 hours a day, along with the IV antibiotics his now hooked up a total of 16 hours a day..not an easy thing to explain to a 5 year old. Even with these changes his retching and gagging has drastically increased this week..it is at times painful to watch. His lungs are not liking the gagging and we have had to increase oxygen and treatments. His pain comes and goes, it is far better than it was over the weekend but its a constant worry for us.

The plan right now is to try to get thru Christmas and get him into Tufts in Boston. He will need further testing to try to figure this all out. At this point we are willing to go wherever we need to go to find some relief for him. It was a hard weekend...even harder than after surgery.

I just don't understand...
xoxo
K

Tuesday, December 22, 2009

HOME

I only have a minute, but we are HOME...yup HOME....HOME....I will update tonight from HOME after I get the kids to bed....it's not the easiest set up, and Mark and I are feeling a little nervous, but we are HOME...

:) xoxo
K

Monday, December 21, 2009

Update

Kyle is still inpatient and still on the morphine. His g tube site is still inflamed but is better than it was when we got here on Friday. We are waiting to see the GI specialist this am, I refuse to have him in here over Christmas...I just can't do that to him. He had a good day yesterday afternoon and we thought for sure we were in the clear but overnight last night things got worse again. Poor kid was miserable. We did get the all clear on his blood cultures, which we pretty much knew on Friday that we were not dealing with a line infection.
We had so hoped to go home today...there is so much we can do at home but fighting this pain might not be one of those things.

xo
K

Saturday, December 19, 2009

Hospital

Yesterday Kyle was admitted back to the hospital with a fever and severe g tube/abdominal pain. His g/j tube has been removed and he's been bleeding quite a bit from the site. He's on a continuous morphine drip to try and control his pain. At this point we are awaiting blood cultures and labs. I will try to update later tonight.

xo
K

Thursday, December 17, 2009

Horrible day

Kyle's had one of the worst days since his surgery a little over two weeks ago. Two nights ago we started a very slow infusion of pedialyte. Yesterday we had small amount of leakage around his g tube site, because it was only a little I continued with the pedialyte last night, even though we had an increase in bile we kept going. Today has been a complete nightmare, Kyle's had major leakage around his g tube, mostly bile which is now burning his skin...I've been changing his g tube dressing hourly but it's not helping...the poor kid has been screaming in pain all day.
Clearly we will not continue with the pedialyte night....this is a major setback...again. Watching him scream all day has been beyond painful and exhausting.

It's time for this sweet kid to catch a break.
K

Sunday, December 13, 2009

Where we fit in.


There are times where the reality of our life smacks us in the face...it's not so much the day to day living, that is something we are and have been working hard at getting used to. After every medical crisis we slowly adjust to our new normal and we move forward. That is our job..what Kyle deserves. The hardest part of living with a child who has a chronic condition is trying to fit in, to somehow not completly lose ourselves in the process of making life as safe and comfortable as possible for our son.
That is something I have struggled with for a very long time. The disconnect that comes with the ache of watching Kyle fight for years. I look at that picture that's over there and I sometimes yern for that girl....oh I was truely that annoying girl. Happy....oh, so happy. I had everything I had ever wanted. I had a great job, a husband who would do anything for me, wonderful friends, a great family...ohhh my life was so good.
There are days where I don't know where I fit in...Kyle doesn't have a defined disease, there are not alot of people out there who have lived in extreme fear for 5 years. Some days I feel like we are no further along in this process than we were 5 years ago when we watched him fight for his life in the NICU. I cant' wrap my brain around any of this....I know I need to stop trying to understand this and just live in this moment, why that seems so hard right now I'm not sure.
We are scheduled to get a new game plan tomorrow for Kyle...we seem to be no closer to getting off the TPN, it's now time to accept that and figure out a new plan for him.
xox
K


Saturday, December 12, 2009

Trying to take it one day at a time


We still are not seeing the improvement we need to see. After emailing back and forth late into the day yesterday with Kyle's surgeon we are now slowing realizing that we are still in the same position we were before surgery. Kyle's bile output overnight is still to high, his bile (at least some of it) is still going in the wrong direction and the output is to much. The hardest part of this is that we haven't even attempted feeds yet and we all know that if we do the bile will just keep increasing. That magically fix we had desperately hoped for is still not there....it was a difficult night.


But today is a new day...we continue hoping that we will see something...something positive from all of this. Our little boy went through alot last week...I still refuse to believe that was all for nothing.


xoxo

K

Thursday, December 10, 2009

I want to just squeeze them....











Just a few pictures from Kyle coming home....









They are not the best quality, I didn't have alot of editing time...but I wanted to share them...


We are still in a holding pattern, waiting for the swelling in Kyle's belly to go down more, keeping positive thoughts...and getting excited to spend Christmas together as a family.


xoxo

K


Wednesday, December 9, 2009

HOPE

We are all adjusting to being home, I think I forget every time we do this that it's not just Kyle that needs to re adjust, that we all have to....and I find myself always out of sorts. Grateful to be home but searching for that routine that I crave when we don't have it.

I have been in daily communication with Kyle's surgeon, I can feel his frustration mounting. We have seen no improvement since surgery. When I asked him today if I should be losing hope, he said not yet...that his bowel was kinked for a long time....it may just need more rest, more time. Although he said he had hoped we would be further along by now. I told him I still have HOPE. I refuse to believe that we are going to be TPN dependant....that his bowels have stopped working....I know we are going to move forward...but like everything Kyle has done since birth he will do this in his own time. For now we wait...and we hope that he can stay infection free thru the holidays....

xoxo
K

Tuesday, December 8, 2009

Home...

Ahhhh...we are home. We got home late yesterday and it was the best feeling ever....until the delivery guy showed up with this weeks TPN order, along with it came the needles, the tubing, the tape, the central line dressing changes.... I have to admit, it made me incredibly sad...as crazy as it was I had so much hope last week, knowing that by now we wouldn't be off TPN all together but maybe we would be on some tube feeds and we would be cutting out that nasty (but life saving) TPN. It took a good 20 minutes before I kicked myself and started to realize that this is how it is, I can't change it....being negative and sad is not going to help Kyle. He needs us to keep going and to stay positive. We need to help his body heal and we need to keep moving forward (even when it feels like we aren't moving anywhere). His liver enzymes before leaving the hospital were WAY to high, we are hoping that this is just his body reacting to the surgery and the biopsy. We are lucky in the fact that Kyle's surgeon is the man with the medicine to help his liver if we keep trending in the wrong direction. We are still waiting for the liver biopsy results so that will help when we get those. We will get more labs tomorrow and hope and pray that his enzyme levels are coming down.

We would not have made it thru the last week without our family, friends and neighbors, can you imagine they still are helping after 5 long years and they continue to amaze me...being able to have Mark and I both at the hospital with Kyle all week was a pretty wonderful thing. He really needed both of us...and we really needed each other. The support everyone continues to give us blows my mind sometimes, from far and near you all keep us going....thank you for loving us....

XO
Kate

I have lots of pictures to upload from the kids being together last night, it's amazing how much they love each other...I think sometimes we under estimate the bond between all of our kids.

Sunday, December 6, 2009

The latest











I have a whole blog floating around in my head, but I can't seem to put it all together...my brain is starting to feel like mush and it's a blog that I don't just want to slap up. So instead I'll give you the latest.


All attempts to slowly start fluids into Kyle have stopped and we are not sure when they will try again. While I know I shouldn't let this discourage me, it is. He had some issues with pain today and it made it tough on all of us. I couldn't stop myself from thinking...what are we doing?????? He needs more time, this will all play out on his schedule, so for now we wait and let his body heal. We are still hoping to go home tomorrow, his surgeon is leaving for a conference and is willing to talk us thru any issues this week....there is basically nothing they are doing here that we can't do at home. Luckily Kyle's surgeon is a brilliant control freak ( I say this with love) and he doesn't want anyone else here making changes without his consent. So that's partly fueling out discharge tomorrow....Kyle still has a long recovery and of course full TPN feeds thru his central line to deal with....but we have been here before so I know we can handle it....and clearly if anything goes wrong off to the hospital we go.


I can't shake the heavy feeling..I want so much more for him...




Kate

I have been missing the kids so much this week that I went thru a ton of old pictures....I'm attaching a few.... :)

*update from the am*

We have already stopped the slow drip of pedialyte, again Kyle's body showed us he wasn't ready. His surgeon was in this am and said to stop it immediately. Discouraged and worried...clearly his body needs more time, we were just so hopeful that we would be moving forward by now. So much hangs on this surgery...it has to be working.

"that baby is driving me nuts"

Oh yah....poor Kyle, clearly everything is taking a toll on him including our sweet preemie roommate....as most of you know my heart melts over any preemie...there is and always will be a special place inside me set aside for doing anything I can to help a fellow preemie parent or child. That being said....deep breathe.....wow....this sweet little girl (with the parents who are never here) is in need of some attention. The nurses (god bless them) try....but they aren't parents...parents who SHOULD BE HERE. Ok...sorry. I will step off the soap box for now but trust me when I can once again thing clearly I have alot to say about this subject.

We changed the plan yesterday and started pedialyte at 5 mls an hour thru the j tube because Kyle's belly was still slightly distended. That didn't last long, his belly ballooned up and the surgeon said to stop. His lungs also started to go downhill a little and it was Kyle's way of telling us he wasn't ready. Last night was a rough one for him, major pain episode that we still have not figured out yet.

We are going to try pedialyte again nice and slow and hope that we can get that into him without any problems. Fingers crossed.

xoxo
K

Saturday, December 5, 2009

Going a little postal....

Yah, that was me this morning when the CNA came in at 6 am to take Kyle's vital signs. I would like to state for the record a few things before you judge me...

  1. Kyle is hooked up to a cardiac and oxygen saturation monitor 24 hours a day
  2. I had just gotten him back to sleep after he was stuck for a sugar check
  3. He was woken up 5 times in the middle of the night for numerous reason, including our infant roommate crying on and off all night. His IV ringing off 4 or 5 times (I lost count) and the surgical team coming in at 5 am to check his incision site.
  4. She came in flipped on a light and just assumed waking him up was a good idea
  5. All to get a temperature check (I am at this point laying in bed with him because he flipped out the last time they woke him up because he was exhausted!) So I would know if his temp was high.

I will say it was not one of my brighter moments....but at his point I'm tired, he's tired, we are sad, miss our kids, miss our home...jeez I think we even miss the dog! ;)

Looks like we will start feeds today into his belly....makes me nervous and a little sick to my stomach! I'll update later...in the meantime I swear to behave myself today!

Thursday, December 3, 2009

wake up, wake up

It's been another long day, this morning Kyle's epidural got pulled out by accident...no one is really sure how but when you have over 15 tubes, wires and IV's hanging off of you it starts to get hard to keep track of everything. This left us chasing pain all afternoon but it seems that as of tonight we have a good hold of it.

We need Kyle's bowels to wake up, as of right now we still have no real bowel sounds and we need them to start making some noise down there. We won't know if the surgery was "successful" until after we try to start feeding him thru the tube in his belly.

His spirits have picked up today which is wonderful to see, he actually leaned over today and told me I was the best Mommy ever....which made me giggle, I haven't heard that in a few days. I'm thinking he's not as mad at me anymore...

xoxo
K

Wednesday, December 2, 2009

I'm trying

I'm trying to understand all this, on a daily basis I try to wrap my head around the last 5 years and so many parts of it make no sense. I have never hidden the fact that we had to have help in getting pregnant with Kyle, while Alex's pregnancy came surprisingly fast...we actually had to work hard to get pregnant with Kyle and also to stay pregnant with Kyle. His entire pregnancy was a struggle filled with worry and anxiety. I can say I loved Kyle as soon as I knew he was there, probably loved him or the imagine of him long before that. As each week in my pregnancy went by I became more and more attached to him. When he came early, I can honestly say never once...not one time in the whole labor process was I ever worried about losing him. It really wasn't until 12 hours after his birth when the NICU dr came to my room to tell me Kyle was critical that the thoughts of losing him started to creep into the back of my brain. There are times when things are bad that I throw out all sorts of stuff at Mark...I wanted him to badly, I pushed fate...I was selfish and he and I are being punished. I try so hard at times to figure out why, after 5 years I still have to watch my child wither in pain, to listen to him scream, and to watch him plead with us to make it stop.
I will not at this point get into my feelings on the issue of God...I realize that's a loaded post...that will come soon I can promise you. I think at times I'm incredibly jealous of the relationship and feelings that so many seem to find for God. I at this point feel bitter and angry. Not for us, but for Kyle. How some can find so much peace with God, does amaze me...

I know.....I'm all over the place...I'm tired. I'm hurting for Kyle. I miss the other two kids, our home, our bed, and I still find myself in this place of trying to wrap my head around all of this....trying to stay positive, knowing we have a long road ahead of us still but knowing that it's going to be ok. There is no other option.

xo
K

Day 3

Day 3 is starting out much harder than the last few days, Kyle's pain is starting to break through. In changing his epidural order last night we knew there was a risk that his pain would not be controlled by the epidural anymore. Seems we've hit that...poor kid is miserable. His surgeon is concerned that the pain will stop him for breathing so we are watching that very closely. Giving his neb treatments before he asks for them since any amount of coughing is putting his pain into a whole new level. He's still incredibly pale and they continue to watch his labs closely.
That's all for now...


xo
K

Tuesday, December 1, 2009

Very long night/day

Kyle is holding strong. We have had a rough day but that is not unexpected the day after a major abdominal surgery. While the epidural has been providing him with great pain control it's producing a very nasty itching side effect. Even after trying numerous medications to try to stop the itching it's only increased. It's very hard to watch and we've already seen him itch one IV out. Kyle is extremely pale and quiet but again, he had major surgery yesterday so we were prepared for this. He continues to amaze us and show us how strong he really is. I can't count how many times I have thought, wow I couldn't be more proud of him....yet everyday I feel more and more proud. His strength is inspiring.

I will update later tonight.

K

Monday, November 30, 2009

ICU

We are in ICU and settled in, as settled in as you can be in ICU. Kyle is doing well for what he's been through. His epidural is working very well and that is helping with his pain control. Poor kid has a total of 3 IV's, a central line, a GJ tube, a urine catheter and a bile bag hanging off of him and he's being amazing. He has been a little confused and quiet but that is also to be expected. He had some blood pressure issues during surgery but we are keeping a close eye on that and so far so good. He's pretty puffy and working hard to breathe but that should improve over the next few days. His surgeon is amazing and is very hopeful that this latest surgery should be very helpful for Kyle. His plans are to be aggressive with his gut and to start pump feeds this weekend, we will know at that point if this surgery was a success...

Thank you as always for the support and the kindness so many of you have shown our family and Kyle...

XO
Kate

Update on Kyle

Hi everyone, this is Kate's friend Carissa. She just wanted me to update you all and tell you that he is still in surgery (as of 5 pm EST) but things are looking good. They don't know a lot of details yet, but they definitely found intestinal issues and were able to fix them. They are now taking out his PICC line and putting a new central line in for him. They were also able to take a liver biopsy and were told that compared to a lot of kids they see on TPN, his liver looked pretty good, so that is a blessing. They are told that Kyle himself is doing awesome - like we had any doubt! He is truly a fighter.

Please continue to keep him in your thoughts and prayers and they finish up the surgery and transfer him to the ICU. I know Kate, Mark and the family truly appreciate it.
Kate will try to update when she can!


He's in

Kyle was taken into the OR around 1. 2 hours late, but we are used to that...he was so very brave. None of this gets easier, after making the trip to the OR more times than I can count I still feel sick when I walk out those doors leaving him behind. We have tried to prepare him as much as we could but that wasn't easy. The surgeon told us to expect that this surgery will take hours. I will update as soon as I can. Please continue to keep Kye in your thoughts in prayers.

XO
K

Sunday, November 29, 2009

Night Before




The boys have been playing alot together today...close play, I actually tried on purpose to just let them do their thing....
Having to explain the next week to Alex was brutal, she is so much like her Mother, she's going to be with family in her own house but she is still so nervous and worried....
Please keep Kyle, Alex and Jack in your thoughts in prayers over the next few days...
With Gratitude
Kate

Saturday, November 28, 2009

Enjoying the quiet


I have been over the last few days trying to literally savor every moment...I can feel the tension as each day slips by...and I know that I've said to Mark over the last 2 days ...please let time slow down. I am not looking forward to Monday, as I have said 100 times I know in my brain that this surgery must be done, that at this point it is our only chance at getting Kyle off the IV TPN and move him forward but in my heart I can't stand this. For 5 years I have felt that failure feeling ( I know my MOD friends are going to jump all over me here) like I should have been able to protect him more...I drive Mark nuts...every time we go inpatient or we meet a new dr we get the same question, "so why was Kyle born premature?" What most don't get is that it's like a knife in the chest...and as hard as I try every time I get that question it makes my heart ache all over again. Kyle was a preemie because my body failed him, I know..I know...but it hurts. While we were meeting with the surgeons in Boston one of them looked at us and said, this is not all prematurity related there is something else wrong. My brain started to scramble and I could feel myself start to panic, while we have always known that Kyle's medical issues are not all prematurity related it was hard to hear that there is more going on here. For years we were told that Kyle would outgrow his prematurity, so many dr's telling us how lucky we were that Kyle was still with us, that with everything he has been through he still is so forgiving...so kind, so sweet.


I was talking to one of Kyle's dr's the other day, we were talking about next steps and treatment plans, I started to cry...and of course instantly apologized. She was of course amazing, and said...."Kate it's ok.....it's been 5 years..."


It has been 5 years, and I can't say I wouldn't change some things...but I do know I would never change who Kyle is and what he's taught me. There are days that this all seems like to much, and then I hear his giggle or see his sweet face, and it's energizing. He is energizing.


xoxo

K

Friday, November 27, 2009

More info coming

I wanted to jump on real quick to let you all know we are home, and are trying to relax for a few days..I was reminded this morning that I should send out a quick update...I'm sorry...I got caught up in the thrill of havng my babies all sleeping in their own beds in their own house! We head back to Boston on Monday for Kyle's abdominal surgery, they have told us he will be in ICU for days and will need to stay in Boston for a while. I will update later tonight or in the am with more detailed info.

xo
K

Wednesday, November 25, 2009

conflicted and confused

I should start with the scope this morning went perfect! At this time they see no need to operate on that area in his esophagus..they don't want to mess with it. This is good..yes it could come back to haunt us years down the road but for now he's safe to move forward as far as that is concerned! Which is a HUGE relief.

After the radiologist reviewed all the films from Maine he is not convinced there is a hernia in his bowels. He wants further testing done. This is tough to swallow. While we don't want a major surgery for Kyle, we were holding on to hope that these worsening issues Kyle has been having are not because his bowels are not working but that his hernia needed to be fixed and that once fixed his stomach and bowels would start working again. We also were told this morning we could go home tomorrow with a surgery date of Monday....it seems now with all the testing we won't be going home tomorrow. We also received his muscle biopsy results but they are confusing us also and we are waiting to have them read....

I will update as soon as we have any info.
K

Tuesday, November 24, 2009

Here

We are checked in and settled at Children's. Wow does this make me miss our familiar MMC. I know that this is where we need to be but I feel so far from home tonight. My sister is due any second and my brother is having his second back surgery as I type this. It's that familiar ache of wanting to be in 10 different places at the same time. But again I know in my brain this is where we need to be...but my heart aches.

The plan is to take Kyle into surgery around 10 am. Once we have the scope and the dilation results we will be able to make a better plan for him. I will update in the am.

xo
K

Monday, November 23, 2009

liver enzymes

Kyle's dr here called and after chatting with her for a few minutes and talking about his tube and belly pain I heard her clear sigh a little and I nervously laughed and said...Oh your not calling for a check in are you? No....his liver enzymes are WAY up....up to high for him. She made an immediate change to his TPN and said we need to address this in Boston tomorrow. It's so clear that Kyle's body hates the TPN...we all hate it. But he needs it now..we can't even begin to put anything into his poor belly...the kid has been miserable for 2 days...so Boston is now even more important. I know we are in safe hands...but I hate this. I hate all of it...I want someone to magically fix this...not exactly the most mature approach...but for this minute I don't want to be.

I will update when we get all settled in tomorrow...

Thank you...for support, love and most of all understanding.
K

I hate being right.

Seriously, I do. Ok, maybe the only time I hate being right is when it involves Kyle. That poor sweet boy had a horrible day yesterday, spent most of the day laying on couch watching the kids decorate the tree...he tried to put a few things up but was more content to lay with me on the couch. He was having horrible stomach pain and it doesn't seem to be much better today. I have emailed the GI dr here but I know they will want us to push thru until tomorrow. So today will be spent trying to keep him as comfortable as we can. He was warm this morning but no fever.

Yesterday he was on my laptop playing and I was watching some TV, there was a man in a hospital bed laying there quiet. Kyle looks at me and says..Momma I not go to the hospital anymore, right? I didn't even know what to say....he knows we are going to Boston but we call it Boston, not the hospital...I'm not looking forward to the conversation tomorrow morning. Poor kid. This is probably the 4th time he's asked us that question since coming home from the last stay....I wish I could say NO Kyle...NO more hospital.

xox
K

Sunday, November 22, 2009

Something is off


I can tell I'm holding my breath, always waiting for the other shoe to drop, checking Kyle's temp over and over everyday. Each morning that I go into his room to unattach him from all the vital tubes he needs at night and I hold my breath, scared that he'll have a fever, another infection and we will have to immediately head to the hospital. I need him to get to Tuesday. This morning no fever, but an increase in work of breathing and his color is off....fills me with dread. His bile output has been up all week. No major increase last night, so while he's still way above normal it's now staying about the same.


We are decorating for Christmas today...we usually make a huge deal about it the day after Thanksgiving but since we won't be here I want it done before we go. I want Kyle to see it all and for him to feel good about it. I want Jack and Alex to decorate with their brother...I want to feel my families happiness before we separate again.


xoxo

K

Friday, November 20, 2009

Busy

I have tried to blog for 3 days now and it seems like every time I sit down someone needs something. ;) Kyle's been struggling with the antibiotics he was on for his central line infection they did some pretty bad things to his bum area and we are still trying to get him past that. I have never seen anything like it. His bile output has increased alot and his g tube site area is inflamed, I worry that this is usually a sign days before that a fever is coming but I'm praying we can just get to Tuesday and not get stuck in the hospital up here. I think I'm avoiding thinking to much about next week. I keep telling myself that missing my birthday and Thanksgiving with the other two kids is no big deal, that we need to focus on getting Kyle better, but there is a piece of me that is so sad that the kids won't be with us on that day. We've missed so much as a family....
Alex got her report card yesterday and it was amazing.....that kid is truly a wonderful kid...started a new school, our Make a Wish trip got cancelled one day before we were supposed to leave, her brother being in the hospital for most of her first semester of third grade and that child pulls off an amazing report card...she continues to amaze me.
Jack is Jack....what a blessing he is. He's been doing a great job at distracting his brother and keeping him smiling.

My new blog is coming soon....one of my bf is creating it..she's been working so hard on it. I can't wait to show it off! :)

xoxo
K

Monday, November 16, 2009

Boston

So we heard from the surgical team at Childrens....looks like we will be spending Thanksgiving in Boston. We will be heading down early next week and have a day of inpatient testing. The next day the team will perform a gastroscopy and get a real good look at his esophagus and stomach. This help them figure out esophagus issue. They will then try to dilate his esophagus a little bit and bring him back out. Because things are so messed up in there he will have to be admitted to ICU for monitoring. Hopefully the next day (depending on what they find) they will perform the hernia repair in his bowel. They are still somewhat unsure of how to fix it this time, the location of the hernia is in a horrible place and located very close to his aorta. Of course right...

So sadly Kyle will have to be opened up twice, from his belly up to his throat. It's going to be a difficult few months. The plan is to let his body rest from the abdominal surgery and then try to fix the esophagus.

That's all for tonight, I feel very lost tonight. Heavy heart....I'm so tired of this for him. We've seen the bowel surgery before....4 times before. So we know what we are in store for. I'll keep you all posted as we get more details.

K

Sunday, November 15, 2009

So we begin again.


You know every time Kyle overcomes another hurdle I feel myself slowly let out a breath. It's been so long since I updated I should give you an overview, although like I said before..if your still reading this blog boy are you loyal. ;)


Kyle was born on October 27, 2004....my sweet little second child who came into this world to early and very weak. Kyle spent the first nine months of his life in the NICU literally fighting to breath. No one at that time could figure out why our little 33 weeker was so terribly sick. Kyle has never eaten by mouth and was entirely g/j tube feed. His lungs during the NICU were so bad it was at that time to dangerous to feed him by mouth for fear of further damaging his lungs. He was tested for all sorts of different genetic issues and passed them all. We finally were released to go home and we left the NICU with 2 Nissen surgeries, a g tube, oxygen, daily nebulizer treatments, loads of medication and really no answers. Kyle up to this point has had a very rough few years. He continues to be unable to tolerate feedings thru his stomach and after lots of testing we have discovered that his stomach does not work. He also has for the second time in his life a very aggressive hernia in his bowels that we hope is the cause behind his increasing feeding intolerance. At this times Kyle is completely TPN dependant and relies on a central line to keep him nourished. During our last hospital stay it was also discovered that Kyle has surgical material in his esophagus that somehow has made it's way from the outside of his esophagus to the inside. It has been there so long that it has created a false track inside and needs to be repaired. Both of these surgeries are major surgeries and will require both of Kyle's abdomen and his chest to be fully opened. The hard part is that his abdomen has already been opened 4 times...complicates things even more for him.

Thru it all....our sweet little middle guy is the smartest, kindest, most wonderful boy you could ask for.

We are at this point waiting for the final proposal from Childrens in Boston. We have submitted a muscle biopsy and are awaiting those results. It is believed that Kyle may have mitochondrial disease of the GI system.

I have clearly glossed over so much of the last 5 years, but I truly try to not look back...only forward. Kyle has fought for his life so many times that I know he'll fight this next battle just as strongly.


Fingers crossed we should have the final game plan tomorrow.

Kate

Tuesday, November 10, 2009

I'm coming back


Ha....ok If your actually seeing this...boy are you loyal! I'll be back soon! I am having my blog re done and I'll be back to blogging! :) So stay tuned!

Tuesday, July 28, 2009

Sorry......

I have to apoligize, things have been nuts....I promise to be back soon, I have more recently update my blog on the March of Dimes site, you can find that here.. www.shareyourstory.org/www.stclairfamily.org I'll be back soon!!

Thanks for hanging in on this blog if you still do!
Warmly
Kate

Monday, May 25, 2009

Naughty

Yah...Big (aka Kyle) has been naughty. Super naughty..and while quite honestly when he's naughty I secretly cheer (he wasn't naughty for 3 1/2 years!) the last two days I have not been cheering..(secretly or otherwise!)
I can't figure out what it's all about he has had a change in meds...he has been a little under the weather, he hasn't been tolerating his g tube feeds well...I mean really this could all add up to a little 4 year old who just wants to be pissed at the world. Can't really blame him! :)
We should hear more from his Dr's on Tuesday or Wednesday....looking for a date to have the j tube placed and a muscle biopsy done.

So send us some patience...and maybe a big ole glass of wine for the Momma! ;)

Hugs
HAPPY MEMORIAL DAY...thank a soldier today! They have given us more than we realize.
Kate

Monday, May 18, 2009

Miss me? :)

Life has been insane...literally. Two weeks ago my grandmother went in for a routine colonoscopy and the doctor ended up perforating her bowel which required immediate surgery. She came through it like a champ but it was a very tense couple of hours. The next day my step Mom went in for surgery, and luckily she also came through amazing. Kyle's been on and off sick and last Monday am my laptop fried. I have to say not having Internet access for 4 days was brutal! ;)
I'm sorry for not posting more often over the last 2 weeks...it's been one thing after another...Kyle's new meds are not working and it seems as though things right now things are actually worse. I got a call from his Doctor here in Maine with unwanted news and her request for Kyle to under go more invasive testing to try to rule some things out. She is concerned (boy I hate when dr's use that word) that his stomach over time has shut down. That this MAY be a progressive thing and there is a concern that his bowels will start to do the same thing. It took me days to process this in my head...I'm still not sure on where I stand. We need answers, even if we don't like the results, Kyle deserves that.
So no new pictures...I'm borrowing a laptop until I can get a new one on order..
Hugs
Kate

Sunday, May 3, 2009

Prayers for Emerson

http://cotaforemersonw.com/node/35

I have been following Emerson's story for almost a year, 2 weeks ago she received her second full bowel, kidney and liver transplant...things are not going well...I ask of you all to keep her in your thoughts...Her Mama has been in the hospital with her for over a year, far away from their home and family.

Squeeze your babies tonight a little harder....

Saturday, May 2, 2009

A whole world outside of our own.


When Kyle was in the NICU, nearly three weeks in to our 9 month stay Mark convinced me to meet Alex and he on my way home from the hospital for dinner, I remember sitting down at the table and placing my drink order and desperately trying to hold back the tears. I reached down to pick up my purse to check my phone for the 10th time since leaving the NICU and I snagged my Hospital ID NICU band on the chair and it fell off....I scrambled to grab it and realized that I had stopped breathing, tears were uncontrollable and I remember looking at Mark so desperately, wanting and needing him to fix it and put it back on my wrist. It was in that moment as I looked around the restaurant at all those that were sitting there quietly eating their meals who were completely unaware of my anguish when the harsh reality of the world continuing on without me slapped me in my face. I had this feeling of rage...I wanted to shake some of them....how could they not know our baby who should have still been in my belly was in the NICU fighting for his life.


No matter what happens in our lives, the world continues to move on with or without us. When your the mother of a child who struggles or who is sick. The mother of a child who fought to live, who fights to breathe, to stay healthy. Their are many moments when I so need the world to stop just for a few minutes so I can catch my breath...or to stop so I can snuggle the kids a minute longer..or to stop because Kyle just stopped playing trains to tell me that he loves me. I so want those moments to last forever...I know they can't...really I know I'm all over the place right now. Some thing is up with Kyle....he's tired and very thirsty...small loss of movement in his right arm when he runs...all things that for Kyle can be concerning so we'll watch him closely and pray, and hope...

Our March for Babies walk is tomorrow....it's going to be a great day!

xoxoxo

Kate

Monday, April 27, 2009

Some pictures
































Life has been so hectic that I havn't even posted Easter pictures...I promise an update soon...I find myself in that funk like state lately and I hate that feeling...I'm powering through it but it's taking a little time ;) !

Wednesday, April 22, 2009

Better

Just a quick update...Kyle is better today, still junky and wheezy but better...I'm seeing some improvements, his attitude is a little rough (love and hate steroids all at the same time!) but his rate of breathing is better today which is great! Now if the rest of us can start making some improvements we will be in good shape!! :)

xoxo
Kate

Monday, April 20, 2009

Pneumonia

Just a quick update...Kyle now has pneumonia. We are at his max for oral steroids and antibiotics, if you all could keep him in your thoughts and prayers I would so appreciate that...he's been through so much, this kid needs and deserves a break!~

We havn't been able to tell if the medicine is helping or hurting the situation, with the steroids so high it makes everything else all screwed up!

I'll update tomorrow...hoping to keep him home and in his own bed!


Love
K

Friday, April 17, 2009

Boston

I am so sorry for my lack of posting...

Monday at 12 am, Jack woke up barking...it was clearly croup, I'll admit I went into panic mode...we were scheduled to leave for Children's with Kyle at 9am.. After a night of no sleep I was able to get Jack into the peds and we loaded him up with meds. Our ped (god love him) assured me that he would be ok, he was pretty sick but would be safe while we were gone. I was so heartbroken to leave him but I knew he was in safe hands....

We arrived at Children's on time and settled in to wait...and wait...and wait. We were finally taken back to the surgery area and of course this is where is became hairy. Kyle knows the drill...we've been down this road to many times, he knew what was coming and he was not happy about it. After some meds he settled down and I took him back to the OR, I can say that I never will get used to this...never, as many times as I've held his hand hand and whispered in his ear, I will never be ok with watching him fight the mask that puts him to sleep. Mark and I then settled in for the next hour and a half. When it was over and we went back we could hear Kyle screaming from the doors...it was horrible. The next hour and a half we battled him coming out of the anesthesia...he pulled out his first IV and I think freaked everyone out...Kyle and his turning blue is not something you like to see..after finally getting him settled we were moved upstairs to his room, minus his sugars dropping once it was a pretty quiet evening, the sensors were in his belly and we now just had to wait till the morning to start the motility testing. It was a LONG brutal night...Kyle was amazing...but the nursing staff came in every hour to check on him..not fun! We started the next day at 5:45, in Xray checking the placement of the probes. After everything was in place we started the test, after about 6 hours the dr came in and gave us the results. I can tell you it's not what we wanted to hear. Basically Kyle's stomach is no longer working at all, luckily their is still movement in his intestines...so we are trying some medication that we are hopeful will help. We have to try it in an 8 week cycle and then follow up with Children's for a long term plan. If it doesn't work and if Kyle can't tolerate the med's then we have to move on to a J tube, by passing his stomach and feed him directly into his intestines. This is really all the info we have at this time...when we go back to Boston in 8 weeks we will get some additional blood tests back and more of a future game plan.

After getting back home, all three kids and I have been pretty sick...started steroids for Kyle tonight, the bug is in his lungs which is pretty scary. Hoping we can all beat this soon!

I'm pretty upset, this is not what we wanted to hear...but I know that we need to take this one day at a time...

xoxo
K

Wednesday, April 15, 2009

Everything hurts

It does everything hurts, my body, my brain, my heart. I should start this by saying I couldn't be more proud of Kyle...really and truely he is amazing. So sweet, so brave, so strong. (So strong in fact he pulled out two IV's in less than 12 hours ;) )

We have loads of information to process and I promise to blog tomorrow...promise! I just can't put it all into words right now. I will say that Kyle is safe, at home playing with his brother and sister and bouncing back. I could never in this world be more proud of him...so proud to call him my son.

For those of you who texted, emailed, called...thank you...thank you...for the prayers sent our way, I'm humbled by them all.

XO
Kate

Friday, April 10, 2009

Oh Thomas







Thomas the tank engine has put a smile on Kyle's face in more situations than I can count... last night was BEYOND PRICELESS....

Tuesday, April 7, 2009

Childrens and Thomas


I'm going to try not to let this be a downer blog...I hate when I let myself get in this mind frame. Yesterday morning I took Kyle off to the hospital for some pre-testing before we go in patient next week in Boston. It was a disaster, complete disaster. Basically we needed to insert barium through his g-tube and take a series of pictures as it traveled down his intestines into his colon. It took about 45 minutes. I can tell you I knew it was going to be bad when we got to the waiting room and they wanted him to put a gown on...yah right...so not happening, he took one look at it and freaked out. That is when the crying started and it didn't stop until an hour later when he was released from the 4 people holding him down for the test. If that is a how next week is going to go I'm not ready for that. I can tell you that I stood by his head holding his blankie to his face and the look on his face was complete terror (he has had this test done 50 times since birth) I just can't stomach this, I'm so tired of subjecting him to all this, again I know he needs all this in my brain but the rest of me is slowly losing it's grip.


I got a call from Children's on Friday telling me that we needed to have Kyle meet with the anesthesiology group before his work up next week...ok, they scheduled it for Friday morning at 7 am....we are 2 hours from Boston. Not only that but Thursday night we have tickets to see Thomas Live in New Hampshire. We wouldn't be home from that until at least 9:30..so this is presenting a scheduling nightmare! I tried to reason with the receptionist on the phone yesterday basically begging her for a different time...anything...and she wouldn't even listen to me..I'll admit I cried...big baby that I am lately. The one thing Kyle loves is Thomas, it's gotten us through more things than I can recount. I just feel like it's overshadowed now....


Also...Jack's pre-school teacher had a beautiful baby girl last week...yesterday she was admitted back to the hospital with chest pains, she had suffered a heart attack and was in surgery all day yesterday...please say an extra prayer for Panda (that's what Jack calls her) she was so excited for this baby..she should be enjoying her right now...


xoxo

K
The picture is from when we went to see Thomas in NH last summer, he was so serious about it... :)

Monday, March 30, 2009

Boston..

I copied this post from my March of Dimes blog...super short on time today so if your reading this twice I'm sorry! :)



So after waiting three weeks, numerous phone calls and my anxiety going through the roof we have the dates for Kyle's inpatient testing. It looks like we are a go for April 13th. I feel good about this, scared because of the testing and that some of the testing involves anesthesia but happy that we finally will get some answers..

Friday we took the kids to the movies to see Monsters vs Aliens (for the record it was SUPER cute) I will say that for the most part I am used to the stares Kyle gets...he is 4 with oxygen and a feeding pump and people are I'm sure curious about this..I have to say I'm getting pretty sick of the twins comment...Kyle and Jack are not twins..in fact if you really look at them you can tell by Kyle's face he is older. Whenever we take the kids anywhere together we get at LEAST 5 times "are they twins??" when we say no they always ask who's older, this is then always followed by (IN FRONT OF KYLE) ohhhh he's so small. Kyle can hear...his hearing in fact is perfect and he knows when you are talking about him in front of him. I can see why people may think the boys are twins so I can laugh that off and explain that they are not...but seriously don't say in front of my fighter....wow he's really small....

Sunday morning we were reading the paper and Kyle walked by me, he said...Momma I'm really small right??? grrr....I told him...nope Big your perfect...your a big boy!! This seemed to make him happy and he ran off... Kids hear and see more than we give them credit for...I just wish adults could realize this...

XOO K

Monday, March 23, 2009

Heartache and Hope


Our trip to Boston was tough. I think that Mark and I have always had a good handle on Kyle medically, I have always trusted my instincts with him even when he was in the NICU...long before we would get blood work back saying he was sick I would know..Ever since Kyle started to have seizures last year and was admitted to the PICU I've had this pit in my stomach. Knowing that something just didn't add up, Kyle was diagnosed with dumping syndrome and we started to treat for that, what concerned me was that the only symptom we had was his hypoglycemia, nothing else. We were sent home on more medicines and told that he HAD to learn to eat by mouth. It was pushed and pushed on us until we also began to believe that we needed to get Kyle into an intensive feeding clinic. A few months ago Kyle had an scope placed through his esophagus into his belly to see if we could see anything that would be causing all the belly pain he has. At this time our GI dr told us that his Nissen wrap (that he had to have corrected 4 times) was to tight and that she had a difficult time getting the probe through...she briefly mentioned another surgery may need to be done to correct this before Kyle would be able to eat. We didn't think to much about this, at the time we were so focused on getting Kyle's dumping syndrome under control and his lungs healthy we foolishly put it on the back burner.

Fast forward to Boston , and the motility specialist telling us that Kyle's wrap was WAY to tight and that surgery was not an option, it would be much to risky. He also told us not no food could pass through it and they weren't sure how long it would take for the wrap to loosen up or if it ever would. For those of you that know our story you know that gagging and retching have been a problem for Kyle since birth, he has now been on continuous feeds (20 hours a day through his G tube) for months now...when he's not on his food he's in a alot of pain. The doctor explained that he shouldn't be gagging on continuous feeds and that clearly something is not adding up, he also doesn't feel like Kyle has dumping syndrome and is concerned that his body is now just so used to the food that it reacts that way when we take the food away.


We are still waiting for our scheduled date to go inpatient at Children's the motility dr will place a probe in Kyle's g tube and run it down through his intestines and we will be able to tell what is working and what isn't...we may also leave with a g/j tube which is a tube that will run into Kyle's jejunum (intestines)..There was also mention of going on TPN, but we hope to avoid that since Kyle would need a central line for that and we don't' have very good luck with those...


So that's it in a brief overview...I had a few days of being sick over some of this information and it hurts to think of the lifetime results of all his stomach surgeries, but I'm trying to be hopeful we are in the right place for now and we can get Kyle the relief he so needs and deserves.


Love

K

Sunday, March 22, 2009

Happy Birthday Jack

Oh, it's been an amazing day...Jack turned 3 today...I'll admit I cried numerous times today, I can't begin to tell you what I would do to go back in time and have Jack all over again. When Jack was born Kyle was 16 months old, not walking, talking or sleeping through the night. I never did get to appreciate Jack's baby days...I slept about an hour a night and was a nervous wreck. I can't go back, but I tell you I appreciate this little kid so much..he makes my heart so happy..

As for Kyle, I will update with a more complete blog tomorrow, I didn't get into details about our Boston trip because I had not fully digested the info we got. I promise to share that with you all tomorrow...today we are hanging as a family and fully appreciating life.

xoxo
K

Wordless Sunday



HAPPY BIRTHDAY JACK...!!

Thursday, March 12, 2009

Boston

Where do I start??? The appointment was good and bad, I guess..Basically we are waiting for an inpatient appointment for further testing, we did blood work today and we will see what those results say. The doctor we saw was great, he listened to what we had to say and based on that and all the testing we've had done already we will move ahead with some invasive testing. Clearly something is wrong, I don't want to fill this blog with all the speculations we talked about today, it wasn't easy to hear. I have always said that knowledge is power...I truly believe that..and while my head is telling me we need more answers it made my heart hurt to think about it. I thank god for Share and for the friends I've made through blogging, the resources I've been able to find...after our appointment I immediately sent a text to Missy (Sammy V's Mom) I needed her knowledge and her input and she made me feel more knowledgeable, which always helps me. We are home, and I'm trying to stay away from the Internet, cheese and rice ( ;) ) that darn google! Thank you all for the support, love and well wishes that you sent me...we are so lucky to have such an amazing group of family and friends behind us.
We are looking at a 4-6 week wait for the inpatient testing...
Kate

Tuesday, March 10, 2009

IF I HAD MY CHILD TO RAISE OVER AGAIN

If I had my child to raise all over again, I'd build self-esteem first, and the house later. I'd finger paint more, and point the finger less. I would do less correcting and more connecting. I'd take my eyes off the watch, and watch with my eyes. I'd take more hikes and fly more kites. I'd stop playing serious, and seriously play. I would run through more fields and gaze at more stars. I'd do more hugging and less tugging. Dian Lommas, from "If I Had My Child to Raise Over Again."


Just a little reminder...more to myself than any of you. I thank god for the world of blogs, I've meet my life long best friends on the March of Dimes http://www.shareyourstory.org website...I've found Mom's and Dad's and babies in the world of blogging that can understand me...they understand this life. I've found blogs that have left me sobbing at my computer...I've found blogs that have inspired me, touched me, comforted me.

There are so many parents out there that don't have one more day with their little fighters...no more play time or snuggle time. Today I just felt the need to remind myself that life is much to short.

We head to Boston in two days...it's not going to be easy. Kyle's been sick, he's on steroids and he's pretty grumpy, it will not be good when they start messing with his belly. Please keep my little guy in your thoughts..we need a little peace for him.

XOXO
K

Sunday, March 8, 2009

Wordless Sunday...;)

This was Kyle, still in the NICU...we leave for Boston Children's hospital early on Thursday, we are so praying for answers...reguardless of what those answers are we need them.

Tuesday, March 3, 2009

vacation






We took the family. along with my brother and his family and my sister and her family down to Boston to the Children's Museum and to the CocoKey indoor water park this weekend. It was a blast! The kids were perfect...everything went wonderful. We had some moments of pain issues for Kyle but I think we are getting so good at seeing the signs that we can head alot of it off at the pass. His bowels are not working..so we've had to intervene a lot, but our BIG appointment is on March 12th at Children's...the cool thing was that we were able to keep him off his oxygen for a good part of the time at the Children's Museum. I'm starting to get nervous about Boston, I can't tell you how hopeful I am for some help, we are maxed out on medications so I'm praying....that this Dr can help...if not off to Cincinnati we go...I'm done waiting for results, we need to start being more aggressive!
If you all get a chance please visit http://www.zoerose.org this is an amazing website, I have been following this Mom for a long time her blog is http://3sorrells.blogspot.com/ and she is an amazing Momma to triplets.
Love
K

Monday, February 23, 2009

Wordless Sunday...1 day late ;)


It's an old picture of Kyle from the NICU, sometimes I look at this and think how can it be 4 years later.....

Thursday, February 19, 2009

Where do I start??

You would think by now I would never, ever say to myself this can't get worse. When Kyle spiked a fever on Sunday I assumed that he had the virus that Alex had on Thursday and Friday. When he started with symptoms similar to the stomach flu we assumed that he had that virus but because his bowels are not working right anyway I again..(my bad) assumed that this is how the virus was coming out. I never thought that both Alex and Jack would get the stomach flu and fever also...never even crossed my mind. Until last night when Jack spiked a fever and Alex crawled into my bed this morning complaining of a belly ache. To say the you know what has hit the fan would be an understatement. Poor Alex, in one week two different illnesses both bad. She's so weak. My bath tub is working in overdrive. As for Kyle, we are now battling blood sugar issues, he gets hypoglycemic...he has dumping syndrome from all the stomach surgeries he has had and the pedialyte is not cutting it. So basically this am I've had to start pushing his food again, he's now mixed half and half peptamen junior and his pedialyte...he'll have to stay on the feeds until we get him back up to full feeds...his poor bowels have just had it. If we can't maintain this we'll be off to the hospital. His Dr is amazing and knows we can handle alot here so she's put it my hands when to make that call...

Sooo in a nut shell...it's pretty tense around here...but we are all here in this house and that in itself is a blessing.


xoxox
Kate

Tuesday, February 17, 2009

sick..sick..sick

Kyle's sick..really sick. It started with a fever on Sunday and has turned into him not tolerating any food through his g tube..I'm on my last resort tonight of trying to run some pedialyte, if he can't tolerate that we are off to the hospital in the am...poor little guy...his heart rate has been elevated but so far I have not had to increase his oxygen. Just hoping you all could keep my little guy in your thoughts.


xoxoxox
K

Sunday, February 15, 2009

Wordless Sunday ;)



and yes..I am totally the Mom who lets their kids eat chocolate on Valentines Day for breakfast! ;)

Thursday, February 12, 2009

I could cry

Ok...I did cry yesterday..it was to say a very frustrating day. I won't rehash the whole thing..let's just say after about 10 phone calls I realized that Kyle's referral for the "god" doctor at Boston Children's Hospital was not submitted 2 weeks ago, it was sent on Friday. After going around and around I finally got his nurse secretary on the phone and asked (ok begged) her to please schedule us an appt without all his paperwork (which she still didn't have) She was so nice...you know the nice kind that as your telling your kids story she's so nice that you start to cry..she had all of Kyle's information from when we were there last and she made an appt for a consult the second week of March. After the consult we will get the date for all the inpatient testing. If we make it that long...I can tell you something is not right..his stomach and bowels are not acting right, lots of retching and gagging, lots of residuals from his g tube. I feel very helpless..he now asks me "to please help him" when he feels a bad episode coming on. It is to say very heartbreaking. So we wait and we hope and we pray to the man upstairs (who I'm still working on trusting again)


On another all three kids woke up with fevers this am, Mark is on a business trip, and I'm almost out of Motrin. It could be a long day...they are all being amazing, none of them feel good (esp. Kyle) but they are being patient and good...so I'm so thankful for that. I have to add a picture..one of Kyle with no oxygen on his sweet face. The boys had just had a bath and Alex was on her way to the dance with her Daddy. Kyle's hair was a little out of control, I think it's time for another hair cut!


xoxoxo

Kate

Sunday, February 8, 2009

Wordless Sunday




Ok so I know that out in the blog world people do Wordless Wednesday...since I never do anything like everyone else ;) I'll start it on Sundays...mostly because by Sunday I'm beat and wouldn't be able to write a blog if you paid me... so we'll start here.... xoxoxo

Saturday, February 7, 2009

Out of sort


I'm feeling out of sorts tonight, we should be leaving tomorrow for Pittsburgh and I feel somewhat anxious that we are not. Oddly enough we've had a few good days with Kyle and for some reason I feel nervous about that also. Guarded, nervous that if I let some of the peace creep in I'll get smacked again soon...

Kyle has been pretty good the last two days...it's been nice...

We are on hold right now, waiting to hear from Boston Children's Hospital...Kyle's GI dr believes we can get almost all if not all of his testing done down there, so we are back to waiting again. Hoping we can keep Kyle comfortable and happy until we can get some more answers.
I know that this picture has nothing to do with this blog, but I feel so badly that Jack goes so unmentioned at times...here's a picture of my littlest baby..he melts me every time.


Hope your all having a great weekend!

Love

K

Monday, February 2, 2009

Graduation


Yes, Kyle graduated from Speech on Thursday, I have to say I was shocked when they told us he wouldn't qualify anymore??!! What kills me is that he was not talking at all a year ago...maybe Mama every once in a while but that was about it. We had the paperwork filed with the state to get him a communication device...and then he got tubes and his adenoids out and 2 months later he was amazingly verbal...sometimes a little over verbal ;) .

I'm attaching a picture of Kyle's last day of speech with Katie, we all love Katie so it was sad for the whole family!


**I have no updates on the medical stuff yet, Kyle's belly was really bothering him this weekend so it's time once again to start pushing some people.**


Thursday, January 29, 2009

More details


I'm sorry for my short post yesterday, I know that it left some questions. You know I have always tried to be upbeat and positive...if you've followed my Share blog I hope that you have seen that. I have my moments of feeling beaten down but I try to keep them few and far between. Yesterday after the second conference call in a week with Pittsburgh I felt lost. While I wasn't looking forward to Pittsburgh, I guess I didn't realize until yesterday how much hope I had put into it. I haven't been sleeping well for the last few weeks (oh who am I kidding how about the last 4 years ;) ) and I know alot of it had to do with anxiety over the move. But I was pushing past all that because I so *hoped* that this would be a quality of life improvement for Kyle. After talking to the Dr in charge at Pittsburgh she feels strongly that Kyle needs a complete GI work up in Cincinnati before we attempt anything else. Clearly there are other issues involving his whole GI system and it would be dangerous to push him at this point. I have to say I totally agree, I really do...I had major reservations about Pittsburgh, the word surgery had been thrown around and that made me nervous in itself...Kyle's already had 4 Major stomach surgeries, another one would be tough. I do not want surgery number 13, at this point. So maybe going to Cincinnati first could prevent that??! Maybe that's my positive thinking again, we won't know until we get there. My mood yesterday really wasn't so much the fact that Pittsburgh right now is out, it really was more of the loss of my hope for some relief for Kyle. The pain and the gagging is taking a toll on me, nice right...imagine being Kyle I can't begin to understand how he feels. But as his Mommy...it's been 4 years of pain...and it's exhausting. So I promise to be back to my positive and go get 'em self soon...really...but for now I'm honestly sad because I would do anything for this sweet, brave little boy and there is nothing I can do but comfort him and keep pushing ahead.


Love

K
I had to attach this picture...Kyle made a pumpkin pie a few months ago with Nurse Meagan...he was so proud of that pie!!

Wednesday, January 28, 2009

update

Hi all

I wanted to get a quick post out to you before it spreads that Kyle will not be leaving for Pittsburgh on Feb 9th. He has not had the best week overall health wise, and the dr's there feel like we need more answers before they can safely accept him in Pittsburgh. They have recommend we go to Cincinnati for some testing that is not available in our area. It looks like this is our only options right now and we need to do what is in Kyle's best interest. While we know this in our brains our hearts are very heavy today. Kyle has been in pain for a long time, Mark and I both put so much hope in Pittsburgh that we both feel so deflated and sad today.

I will keep my blog updated with our plans...
Love
K

Friday, January 23, 2009

Oh my!


I have so much to update but I needed to post this....Mark, the kids and I were able to go to Sunday River for most of this week...it was amazing!



  • Grocery's and Gas $100.00

  • Ski lessons and rental equipment for the kids $500.00

  • Seeing our preemie ski like the other kids..... PRICELESS

I apoligize for the fuzzy picture, our digital camera is broken....of course! So I had to take this picture of Kyle with my phone...I promise to update on Pittsburgh tomorrow!

The kids that they told us might now make it, was skiing...I can't tell you how much we needed to see this right now!

xoxo

Monday, January 12, 2009

The history of Mr. Big




It would be impossible for me to go back through the last 4 years and recount everything we have been through...but I'll try to give you the basics...for those of you that are new to our world.




My pregnancy with Kyle was rough..not only did we have numerous scares along the way, numerous hospital stays, but at 32 weeks it was discovered that I was developing pre-eclampsia. At this time I was hospitalized and placed on the dreaded magnesium and told we would have to wait and see. We made it about 12 hours before they said Kyle would need to come...this is the part that I hate...the part that I look back on and want to slap myself. I don't do well on the mag, (although I've never heard anyone do well on mag) I usually end up sick to my stomach, unable to see and a little (maybe alot) confused. So the dr comes in and says we are going to have to induce you tomorrow am, your blood pressure is not getting better it's getting worse so we think it's best to take the baby tomorrow. I was so happy...so incredibly happy...this nightmare would finally be over. The dr went on to say that Kyle would probably need to stay in the NICU for a few weeks learning to eat and growing. He may require a little oxygen but that shouldn't last long. Here once again I was a dummy never realizing what the NICU was or that while MOST babies do well, some 33 weekers don't do well...


Fast forward to the next day, labor and delivery was very difficult, out Kyle came and he was instantly taken to the NICU, he cried ever so quietly and that was it...


Within 12 hours Kyle was ventilated and we were told he may not survive. I won't get into all the heartache with the NICU, it was 9 very long months...it was up and it was down..


When we brought Kyle home on oxygen and a feeding tube, we really thought we were in the clear. We again were so wrong. Kyle has had a total of 12 surgeries, he has spent over 1 year and 6 months in the hospital. He has been labeled with BPD, reflux, dumping syndrome and hypoglycemia. He also eats nothing by mouth. A few of you have asked why exactly is he going to Pittsburgh. Pittsburgh offers us a fresh set of eyes, they have a very intensive feeding clinic (kyle's stomach is like a cast iron pot...it doesn't move so it's having a very hard time processing liquids) Pittsburgh also has some testing that is unavailable to us here. Kyle spends a part of his day in a lot of pain. We are hoping this all will help us get to the bottom of it. Pittsburgh will be hard for him..he'll be away from his family and his friends..




I have to say that Kyle is brave, oh so brave, braver than most people I have ever encountered, so I know he'll do amazing when we get there.




xoxo


K


There have been some questions about why we call Kyle "Big" or "biggie" that comes from his NICU days...when he was in the NICU he was a big baby at 4 lbs., I started calling him Mr. Big and it has evolved to "Big". The whole family does it...in fact I don't know when the last time Alex called Kyle ~ Kyle... Some people have asked if it comes from Sex in the City..and while I *heart* that show...nope it has nothing to do with it! :)