Me and the Big guy

I'll start this by saying, I don't expect anyone to agree with me on this blog, I fully intend to get the comments saying so...but oh well...here goes anyway.

I have struggled with God for a LONG time...I've said before I'm jealous of those who can put all their faith, their life, their world into God's hands and feel good about it.

When I was 10 my Mom died...from breast cancer. She believed in GOD, she read the bible, she took us to Church, she taught us about God and she had us baptized when we were ready. She never forced God down our throats but instead wanted us to find where we were comfortable and then she encouraged our faith. When she died I felt betrayed by our God...I felt so alone. How could God do that to us...it was the only experience I had with death, with bad things...it was a huge shock. I can say I never forgave God for that...never...

Until I got pregnant with Alex, and the ultrasound tech said it was girl...and a little bit of my heart healed. I needed her...I wanted a little piece of my Mom back, and I felt like this was God's way of bringing me a little peace, a little comfort.

Fast forward to Kyle...Kyle's birth...Kyle's 9 months in the NICU at MMC....the 5 years we have spent literally fighting for his life. The constant pain and the testing and the heartache...

And me and God...are no longer speaking. I say this light heartedly to my family, to my husband. But I'm serious...I don't ask him or should I say "pray" to him anymore. It doesn't mean I don't believe in a higher being...I at this point have NO idea what I believe in anymore. I want to believe, I want to put all my faith in him...but to watch my little boy suffer they way that he has for 5 years...well to say my "faith" has been tested is an understatement. I have friends that have lost children, good people, the kind of people that should be raising children....how can any of that make sense?

I don't think God's role is to make life easy for people, I don't expect him to ease all pain and suffering...but I do expect more. Maybe it's me...the way I think...maybe I hope for to much.

I think and believe that if say Kyle's name, if you talk about him to people, if his strength helps you in some way...that's just as powerful as saying a prayer for him. Oh and don't get me wrong, when people say they are praying for him..that's great. We'll take that, because that means you believe and well, I'm a little jealous of that. If I am feeling low...I will reach to my Mom...and to Mark's Mom...but me and God...still not speaking.

xoxo
Kate

Head games

I play head games with myself, I'm sure it's unhealthy in some ways and healthy in others. I work out worse cases scenarios in my brain and then when things don't go that bad I somehow feel a little better about life. It's been one of those days, where I find I'm talking to myself all day in my brain...trying to make sense of things that make no sense to me. We are still at home and will be as long as Kyle stays stable until next week...his team is still trying to figure some things out and while I know they are trying I feel frustrated. Kyle's off a bit and has been the last few days, those subtle changes that we notice that may not be alarming in some kids...but with Kyle it makes us anxious. Makes his dr anxious...big sigh. We are going to start replacing his fluids thru his IV tomorrow...this will keep us home more but increases us messing with our life line the PICC. We got word that Columbus can't take him until March...I'm still trying to process that. I am still living life for today. Enjoying today's small moments...like when Kyle saw Alex get off the bus, he turned and looked at me and said.."there's my girl" So excited to see his sister...makes me melt..just a little.

xoxo

K

My girlfriend http://www.miraclemonsterdesigns.blogspot.com/ did this blog and this picture of the boys..she's pretty amazing...and very talented! :)

Not a good day

I knew last night that today's appointments wouldn't be good, Kyle liver enzymes are way elevated again and he lost weight for the 4th week in a row...we have no other choice at this point then to admit him to the hospital and start the Omegaven for his liver. His dr also let us know that it looks like Columbus is still 3 weeks out which scares all of us, we are literally working on borrowed time with the PICC line and they aren't comfortable putting in another central line here. They want Columbus to do it. During this stay we will also place a g / j tube again and hope that we can maybe get some feeds thru the j...hoping...praying....we know what normally happens when we try this but we have to keep trying. He will hopefully be admitted tomorrow but it could be Thursday, it all depends on the schedule down in IR..we are requesting a specific team so it may take an extra day. None of this makes sense to him, he's confused tonight. He's struggling with some anxiety issues....

I am so angry, I can barely stand it. I hate this...he's so tiny right now...I am petrified of another infection...his body is already so compromised.

it's going to be a long day

Big sigh...I hate starting the day with dread...we are off to the dr's office for two appointments that will likely end with me feeling sad and unsettled. The only good thing I'm guessing is we should get a better feel for when the trip to Columbus will happen, I'm guessing next week. Which then brings up a whole bunch of other emotions....so I'm taking my own advice and living for today...not going to worry about the next couple of hours and just play with the boys and be happy until it's time to go ...can't wait to put Kyle on the scale, hmmm I wonder what will happen if I have a total meltdown when I see the number on the scale..think they've ever seen that before?

XOXO
K

Quickly

Kyle has been accepted by the team at Columbus. This is wonderful news, he will go inpatient as soon as the insurance goes thru..we are hoping for next week...for now I wanted to post a few pictures of the kids...

Neuro, and weight loss

I knew going into yesterday's three dr's appts that I would leave them feeling discouraged. Our appointment with Endo went fine no changes...Kyle will need to supplement his cortisone for up to a year and he'll need stress doses of steroids anytime his body is in stress..still concerned that his sugars aren't holding so we need to monitor those super closely. After endo we headed up to GI we went to talk about Kyle's TPN schedule and his labs from the day before. Since Kyle is totally on TPN his weight has to be monitored closely, I can tell just by picking him up that his weight would not have increased but I was so hoping there would have been a gain at least. I wanted to cry when I saw he had a loss....we went into a room and waited to see the GI dr..(who I have to say I LOVE) she seemed as bummed as us. She also wasn't happy with his labs from the day before or how he looked. Kyle's been really pale and very sleepy the last few days. Our biggest concern is that he's still twitching and has started to tremble and zone out on us. Very scary to see....his GI dr is quickly pushing the paperwork for Columbus..at this point it looks like Kyle will have to be med flighted, it's just far to risky to try to fly commercial with him.

We have a call in to Neuro...hoping for a response today..I'm now in full blown panic made over trying to get everything ready for us to leave. I have mixed feelings over the whole thing but I keep telling myself we have to do this, we have to keep fighting this...

xoxo
Kate

Dr's meeting, family, and staying grounded

We had our meeting on Friday afternoon with Kyle's main dr. It was hard. We have to make choices for Kyle that will influence him for the rest of his life...that could influence our family, our other children...I sometimes get tired of making these choices for him...we left the appt and I had that feeling of driving..it was a beautiful day here and I wanted to keep driving. I took the long way home, doesn't that sound crazy. I so wanted a break from reality, I would...never, ever walk away from this...from him...never, but sometimes my brain hurts so bad that I ache for a break from it. But when you have children...you never really get a break, the kids are never far from my head, or mainly my heart.

We are going to Columbus Children's..it seems like the best fit for him. We should know by Friday when we are going, we are under a pretty intense time crunch, we are living with a PICC line and we know that it's short lived, the dr's here are nervous to put in a central line since every time we do he gets a bad infection. His dr feels strongly that the surgical material in his esophagus needs to come out, that it's adding to his issues. The problem with that is that it's a very intense surgery, complicated, scary.

So now we wait and we hope we can keep Kyle healthy and out of the hospital....

There are times where doing this is lonely, it's easy for us to retreat into ourselves. After the meeting on Friday, I felt incredible lonely. I didn't want to talk about it or think about it. I ended up going out with some girlfriends that night for the first time in months, it was wonderful...I laughed, and felt loved. It was exactly what I needed.
Then on Saturday night we had dinner with Mark's entire family, it was again exactly what we needed....we left dinner feeling loved and surrounded by support and comfort.
Family and friends keep us grounded...they keep us feeling sane and loved...as hard as this is going to be the amazing thing is to know we aren't alone, and that in itself is a wonderful thing.

XO
Kate

School

Kyle went to school yesterday, oh I wish I could describe how excited and happy he was., he had his backpack on 45 minutes before we had to leave, he was so excited. The best thing for him was that all the kids remembered him and welcomed him back so warmly. His teacher rocks and he gave her a big hug when he walked in. Lucky for him he got to go again today(no school tomorrow so they had a make up day today!)
I came home and got a phone call from the school where Kyle will be attending kindergarten next year..the more I talked to them and filled them in on Kyle the quieter they got...really I guess the more I talked the more I felt sick to my stomach. At this point he attends pre-school with a nurse...(thank god for her) it's really the only way he could do it...(just got a text from her saying his belly hurts and she's not sure about making it thru the next 2 hours.) Clearly we can't send a nurse with him to K...and since we see no end in sight...ahhh I don't even know what to say. I'm anxious about our meeting tomorrow and it's starting to take a toll.

xoxo
K

Big day

Tomorrow Kyle goes back to pre-school. His Mommy is a nervous wreck, he is BEYOND excited. He's asked me about 15 times today if he's still going. He has only gone 5 days this year due to all the hospital time and surgery we've been having lately. I'm feeling the pressure, his case worker sent me an email that the school district here wants to meet about him starting kindergarten next year...how do think about that when your petrified to think about a month from now. Six months ago I felt hopeful about Kyle getting on the big yellow school bus...now...I'm not sure what I feel.

So if you can...wish us luck for tomorrow..I know it may sound silly..but going back is so huge to him..I worry he'll have a fever or his pain will be to bad and I'll have to say no...

Fingers crossed..

XOXO
K

For all those waiting and emailing about where we are taking Kyle....Mark and I have made a choice on the hospital but we haven't had a chance to talk to our families yet..and we also meet with his team here on Friday to finalize everything. I promise to update Friday night with details.

Life Lessons

Life Lessons
1. Life isn't fair, but it's still good.
2. When in doubt, just take the next small step.
3. Life is too short to waste time hating anyone.
4. Your job won't take care of you when you are sick. Your friends and parents will. Stay in touch.
5. Pay off your credit cards every month.
6. You don't have to win every argument. Agree to disagree.
7. Cry with someone. It's more healing than crying alone.
8. It's OK to get angry with God. He can take it.
9. Save for retirement starting with your first paycheck.
10. When it comes to chocolate, resistance is futile.
11. Make peace with your past so it won't screw up the present.
12. It's OK to let your children see you cry.
13. Don't compare your life to others. You have no idea what their journey is all about.
14. If a relationship has to be a secret, you shouldn't be in it.
15. Everything can change in the blink of an eye. But don't worry; God never blinks.
16. Take a deep breath. It calms the mind.
17. Get rid of anything that isn't useful, beautiful or joyful.
18. Whatever doesn't kill you really does make you stronger.
19. It's never too late to have a happy childhood. But the second one is up to you and no one else.
20. When it comes to going after what you love in life, don't take no for an answer.
21. Burn the candles, use the nice sheets, wear the fancy lingerie. Don't save it for a special occasion... Today is special.
22. Over prepare, then go with the flow.
23. Be eccentric now. Don't wait for old age to wear purple.
24. The most important sex organ is the brain.
25. No one is in charge of your happiness but you.
26. Frame every so-called disaster with these words 'In five years, will this matter?
27. Always choose life.
28. Forgive everyone everything.
29. What other people think of you is none of your business.
30. Time heals almost everything. Give time time.
31. However good or bad a situation is, it will change.
32. Don't take yourself so seriously. No one else does.
33. Believe in miracles.
34. God loves you because of who God is, not because of anything you did or didn't do.
35. Don't audit life. Show up and make the most of it now.
36. Growing old beats the alternative -- dying young.
37. Your children get only one childhood.
38. All that truly matters in the end is that you loved.
39. Get outside every day. Miracles are waiting everywhere.
40. If we all threw our problems in a pile and saw everyone else's, we'd grab ours back.
41. Envy is a waste of time. You already have all you need.
42. The best is yet to come.
43. No matter how you feel, get up, dress up and show up.
44. Yield.
45. Life isn't tied with a bow, but it's still a gift.
~Regina Brett

I read this right when I needed to...I may not fully agree with all of of these but they do speak volumes about how I view life right now...live for today.

xoxo
K

Just a few pictures

These are from Christmas...I am so behind! The kids did cookies with Mark and my parents..it was hysterical. Kyle eats nothing by mouth so anything involving food is always interesting with him...

I love the top picture...not sure if Jack is bored or he wants me to stop taking his picture! ;)

xoxo

K

deep breath

I finally had a chance today to talk to Kyle's primary GI specialist here, it left me feeling anxious and unsettled. While both Mark and I know that Kyle has gotten worse it's hard to hear that from her. Her recommendation is to bypass Tufts...(she doesn't feel like they have the surgical staff to take care of Kyle) and move directly to either Cincinnati Children's or Columbus Children's. Both these hospitals can cover all his issues and hopefully with less delay. She wants Mark and I to research them both and let her know Monday which we would prefer...she wants to meet next week without Kyle to talk about how best to care for him here until we can get to one of these hospitals. She also mentioned talking about his advanced directives, and while he's not even close to needing that in our opinion she thinks it's important to have everything covered. She wanted me to know this wouldn't be a quick trip down, that they'll want all their own tests..I hate that he'll have to go thru more to get answers but at this point we don't have a choice we can't keep going in this direction. She feels strongly that the surgical pledgett that's in his esophagus is a problem and she wants that further discussed. She's afraid it's contributing to his on going line infections.
She wanted me to know that she knows this will be hard on us but her fear is that if we don't do something we'll run out of time. I made it clear to her that we'll do whatever it takes, wherever we need to go we'll go...I don't know how I'll explain this to Alex and Jack...or even more what I'll do with them while we are gone...I feel sick over this....but I know that we'll figure it all out.

I keep promising pictures! I swear they are coming! ;) Tonight...I'm on it!

xoxo
K

Blogging for me...

Something is bugging me...and it shouldn't be. I have to say that I've been blogging for 4 years...for most of those four years I've blogged in a safe place, where people are alot like me, that place became my family, I made some of my best friends there, I meet some of the most strongest and amazing parents and children on this planet. I had found an organization that wanted to fight as strong and forceful as I did to prevent, educate and support families like mine. The March of Dimes http://www.marchofdimes.com is an amazing group of people, I really can't say enough good things about them. The provided a safe and welcoming site for me...maybe it was to safe. ;) A few days ago I got this comment in my comments section here..

Your blog keeps getting better and better! Your older articles are not as good as newer ones you have a lot more creativity and originality now keep it up!

Here is the thing...it was posted anonymous...which makes me giggle...and when this comment was pointed out to me by one of my long term body guards ;) my first reaction was screw them...creativity and originality...seriously...this is our life. Hmm should I ask Kyle to come up with more issues to keep my readers interested...should we find another disease for him to have so that my creativity and originality can keep my readers coming back?! See I don't think it was posted to hurt me, or my writing skills, which come on...I already know they bite! After blogging for so long and never getting anything left on my blogs except love and support it took me a few days to process this. Again I don't think this was left to hurt me...it's not mean in any way, I think though that someone doesn't really get us or our family...I would like nothing better then to blog every day about the sweet silly things my 3 adorable children do. I want that, I crave that. But instead I blog usually on the fly after my heart and brain have been stomped on. There isn't much creativity left in my body at the end of our days. While Mark and I both try to keep our humor and wits about us..really after watching our little boy struggle and fight to survive after 5 years...well...I don't even know what to say.

I have lots to update later tonight but I'm waiting for another call back from one of Kyle's drs...then I'll update with the complete scoop...

xoxo
K

Totally off topic

Is it just me or do cold commercials drive others nuts to....I'm sorry but I take DayQuil and I still can't move...why is it that the chick on the commercial can go and win a gold medal in a snowboard competition after taking some kicking cold medicine, and again I feel like a mack truck hit me...really does that drive anyone else nuts??!! Every time I see those commercials I feel hopeful...like I'm going to pop those pills and I'm going to zip around my house like wonder woman...and every time I'm totally let down..


Kyle had a fabulous night last night! :)

xoxo
K

all good

It's a day full of good news around here...so we're taking it and running with it..literally! Kyle's MRI and EEG were both normal, no sign of any tumors or seizures. Which is amazing news. Because his dr's are so great and because of the fact we can do almost all his care here, (TPN, IV antibiotics, pain control) we got to leave the hospital and come home! I can't even begin to tell you how amazing it is to be home. All home and in the same house...Alex's face was priceless when she came thru the front door and saw Kyle...

I have a conference call with Kyle's team here later today...I'm hoping for a moving forward plan.

For now we are living for today! ;)

xoxo
K

More of an update from today

Kyle's day started really early the nurse woke him and Mark up at 5 so that by the time they did Kyle's EEG he would be sleepy. The tech came at 9:15 and I have to say I was nervous with Kyle you never know how he's going ot handle a situation...after the tech places all 28 leads on his head he then had to fall asleep...which was pretty funny...he did it in about 5 minutes...Poor guy they made me wake him up after 10 minutes so they could complete the test by shining a bright light in his eyes....he cried and cried he was so tired. As soon as that was done the transport came to take Kyle down to MRI...this is where my blood starts to boil....they took us down at 11:15, they didn't put Kyle under until 12:30....by 12 he was nervous and down right scared...we kept telling im he was getting pictures taken of his brain and his belly and that he would take a little a nap for it...this poor kid...knows to much, as soon as the drugs hit his veins his whole body tensed and he tried to cry out to us...horrible. I swear this gets harder and harder every time. Before he went under we explained to the anesthesiologist that Kyle has a diagnosed case of re immersion delirium...it can be pretty severe and scary for all of us. There are certain meds that make this a much better and safer wake up for him...it's all over his chart plus we talked to him about it so I felt safe that Kyle would be ok. 3 hours later our baby was screaming from the recovery room, as Mark and I came thru the doors I ask the dr did you give him what he needs and he said NO, he's fine and left...like left never came back.....
we asked to be brought back upstairs and had to sit with Kyle who screamed and was petrified for almost 2 hours...all because a DR couldn't take 5 minutes to help our little guy..That has never happened to us here...never....I can tell you this it will never happen again. His nurses up here on the floor went above and beyond to help Kyle thru this but it should NEVER have happened.
Mark and I work very hard so that Kyle never feels like he's a number....a name to cross off at the end of the day...he's a sweet, beautiful, intelligent 5 year old little boy who should be treated with care and compassion...my heart aches still....I can't tell you all how horrible it was to watch this....

We meet with the dr's at 9 am...
I will update after
xoxo
K

MRI and EEG

Both tests are complete...it's been a long day. I can't begin to tell you how amazing I think Kyle is...it overwhelmed me today. I'll update with details later...he had a pretty rough afternoon. We won't have the results until tomorrow...gosh that seems like so far away.

Thank you for keeping Kyle in your mind and hearts today...we are so lucky to have so many people love us and love Kyle....no matter how hard our days are we know we are never alone in this battle..

xoxo
K

Tomorrow

Tomorrow is the big day, Kyle's EEG and MRI will both take place tomorrow. We should have the results by tomorrow night!

I will update as soon as we know anything...

xoxo
K

Where to start.

I don't know where to start, my brain is cloudy and I feel angry. Yesterday we found out that Kyle's cortisol levels in his body were non-existent...normal levels would be around 12-18...he had none that could be detected in his blood. Cortisol is a corticosteroid hormone or glucocorticoid produced by the adrenal cortex, that is part of the adrenal gland. Why his body is no longer producing this we do not know. They caught it because his blood pressures were dropping and they ran a series of tests to help determine why. Thank god they caught he could have died from not having any in his body. They are at this point giving him cortisol and stress steroids to help his body start making more of this cortisol. The problem is we don't know yet why his body stopped making it...the labs were drawn and have to be sent to the Mayo clinic, we won't know for another week. On top of that the twitching has not stopped nor has his belly pain. He will get an EEG tomorrow morning and also an MRI at some point in the next two days to look at his adrenal gland and his brain...

He's exhausted, in pain, and wants to go home. We are no further closer to finding out what is going on with his belly then we were a week ago...

I will update tomorrow when we know more..

xox
K

The latest

So it's been a rough week...we know that..but so far no new infections have grown from the new PICC line, we are still very hopeful that we are in good shape there. The first antibiotic that they put Kyle on was very nasty and his body clearly did not like it...it left his twitching uncontrollably for days...it can take up to 6 days for it to fully leave his system and it does seem to be much better today. it was horrible to watch him do it...really hoping we never need that drug again. Kyle's liver enzymes are creeping up again, hoping that they are better today. If they aren't we'll have to start trying some things to get them back down. I'm hoping for no bumps in the road today, seems every day we get more unwanted news. He had a pretty good night last night, more breathing treatments than normal but his lungs are stressed right now..hoping that will get better over the next few days. Still no plan for home yet...still dealing with pain issues but I keep hoping that they will get better. Working on getting in to see a new dr at Tufts in Boston...hoping for some help from him.

I will update later...I even actually have pictures! :)
OX
K