Still sick, is that possible...

Kyle is still sick, in fact we've all been sick for the last few days. Jack and Alex seem to be getting past it ok while Big is still struggling. I got hit with it in the middle of the night Thursday night..pretty sure when I realized I was sick (while sitting in Big's room giving him one of his every 2 hour nebs) I thought there was a good chance I was going to have a nervous breakdown. I did have a good laugh on Wednesday afternoon, Kyles pulmonary NP called to let me know that all the meds would be delivered to us that afternoon (all his IV meds) and she mentioned that she had talked to the on call GI dr who asked her if Kyle was being admitted....she thank god had my back and explained to her that Kyle only gets admitted if we are going to PICU and that we don't hit PICU unless we are at every hour nebs...it's been our agreement since Kyle came home from the NICU. It's at these times I am so grateful for our dr's...who know and trust us! Because Kyle has been so sick for so long, we know when he needs to go in. I can say while it's hard to make the move to the hospital we always know when it's time to go...luckily we haven't been there this time.

I have to say, and I know I say this alot....this kid continues to amaze me...he's getting so big....he knows when he needs nebs, more oxygen, more meds...almost before I know he needs them. While it's good that he can voice what he needs it's also tough sometimes...he's voicing more about his belly and his lungs. You can see and feel his frustrations.

We should have some more info about his surgery this week...we have a long way to go before he's safe to go under for this, I hate how much this sickness has set us back.

XO
Kate

Sick update

Kyle has been horribly sick but yesterday's dr's appt went well, we were able to get IV antibiotics and IV steroids, it's been a little confusing trying to get everything run into his line in the right order at the right time, but again I'm so incredibly grateful that Kyle's dr's have so much faith in us and allowed us to do all this at home....it's an overwhelming responsibility at times but again....we are at home. That's huge to us.

I haven't had time to blog the way I like to, and I'm noticing that it's bothering me....but every time I sit down to write I feel overwhelmed and exhausted.

So for now just know that Kyle is amazing, and strong and brave. As for us...we are still living life for today.

xoxo
Kate

sick

Kyle is sick. A slight cold that has turned nasty and literally thrown his entire system into a tailspin. I'm on the pity train today....not so much for me, I can survive on zero sleep, been doing it for years, but enough is enough for him. Like everyday life isn't hard enough. It's in his lungs, it's shut down his entire gi tract...both his pulmonary dr and GI dr are on vacation. (how dare they go at the same time ;) ) We have started IV fluids in hopes of holding off any dehydration, his output is huge right now...which in a kid like Kyle is normal. His lungs are miserable and we are at every 2 hour treatments...his pulmo and I have an agreement that when we get to every hour it's off to the PICU...until then I can treat this at home. Of course with that comes all my worries of doing something wrong, missing something...harming him in some way. His labs are being drawn today so that will give us a little insight. Until then we keep plugging along and hoping and praying we can stay home!

xoxo
Kate

Happy Birthday Jack...

Happy Birthday to my sweet baby....who hates clothes, loves cars and will forever be my baby.

XO

Kyle is sick so no time to update for now...

Kate

There are times where he look so much older than 5

one of our heros

Pilot Tom and Kyle... Tom came to us from Angel flights Northeast.... Tom is one of the nicest people we have ever encountered. This journey has been so hard on all of us. But I am so thankful there are people in the world like Pilot Tom....http://www.angelflightne.org/ I can't say enough good things about these people. Amazing....

I'll update more later..

xoxo

K

I got into trouble

Ok, I never ever pretend to have it all together..in fact if you know me in real life the words..Kate and having it all together do not go in the same sentence. Three kids, a husband, a dog, a house....it at times gets all jumbled together. Alex has had a killer canker in her mouth since last week..poor sweet girl is having a hard time eating. My parents (god love them) picked the kids up on Friday and quickly stopped to get some anbesol jr for her mouth. This morning when she asked me if she could take it to school with her so she could put it on before snack and lunch I immediately said yes...I mean it's anbesol...JUNIOR...sold over the counter (are you feeling where this is going?!) Fast forward to about 11 o'clock today, I'm unhooking Kyle from his TPN...phone rings and it's Alex's school...I go into panic mode thinking crap..she's sick. But no..it's just the school nurse informing me that I broke a BIG time rule at school by letting Alex bring that to school...if I want to do that then I need a note from her pediatrician. She then goes on to tell me in a very stern voice that I would need to come pick up the anbesol and never let it come to school with Alex again. Ok...so here is where I know I was wrong...but I laughed...seriously I couldn't help it. She wanted me to load the boys in the pouring rain to come to school to pick up anbesol...freaking anbesol. Um..no...it's not going to happen. Listen I get rules, I do...I want my kids to understand rules...we all have to live by rules. But this one had me at first ticked and then laughing. Again, I'm probably wrong here but the school nurse was clearly ticked off at me for sending it in the first place...and if you could have seen me..I have on gloves and a saline flush in my hand...trying to not touch anything so that I don't contaminate Kyle's TPN line and she's calling me because I let Alex take ANBESOL to school...

Speaking of Kyle, poor kid had some belly issues this afternoon, not totally sure on why...he was leaking around his tube alot...his lungs haven't been so hot lately, we are guessing it's from the reflux but we'll see the pulmonary dr on Thursday just for a check in. Still waiting to hear from surgery here about the j tube. They were waiting for the reports from Columbus. Hoping we can get this scheduled soon...

We are still way over the moon at being home, trying to get settled and also get ready for Jack's birthday...my baby turns 4 in a week. Seems totally unreal!

xoxo
Kate

settling back in

We are home and loving it, the boys are right back to where they left off....inseparable and playing up a storm. Alex is back to quietly overseeing them and loving on us.

It feels safe and comforting to be home, I have realized as Kyle has gotten sicker over the last year that my safe zone seems to be home, I find when I'm away I crave it. Everything I could ever need for him in an emergency is here....his little body can revolt on us at any given time and it can be nerve racking to be away from that, even when we were in patient in a hospital I was nervous. Kyle's team at MMC from his dr's to his nurses know him...they know us. I found myself missing that so much this week. You form a trust, a bond with people when you work this closely with them...its hard to re create that.

I've wanted to blog for over a week about the loads of thanks I need to give....that blog is still rattling around in my head so forgive me I know I still owe some pretty serious thank you's...I promise they are coming.

A few of you have asked if we got a "diagnosis" for Kyle while we were in Columbus. We did not....what we got was proof of what we have been seeing for a long time, Kyle's motility, while still slightly there is bad. Do we want a diagnosis....sure we do....but it won't change the way we treat him right now, we are still in crisis mode....he is still TPN dependant and will be for a while. We won't know if he can get off of TPN until we do the j tube surgery. At this point we have no reason to believe it won't work. Until a dr says it's not working anymore (his motility) we will keep thinking positive and moving ahead.

People have been incredibly kind with their words of support to both Mark and I...I thank you for that. I won't speak for Mark....I only speak for myself when I say this... having a chronically ill child for over 5 years does take a toll on you...I wish I could say that for the last 5 years I've been proud of how I've handled every situation that has been thrown at us. If you had told me that at the age of 27 I would have a preemie, watch him almost be taken from me numerous times, live my life in a hospital, watch my sweet baby have over 13 serious surgeries and come out unscathed I would have laughed at you. Again I'm not perfect...there are many things I wish I could change, take back, do over....I can't do that. What I am trying to do is be the best person I can be...which in turn I think helps me be a better Mom, wife, friend and daughter. Where is this coming from your probably asking.....the last few weeks have been tough, I have questioned alot, worried a ton, and felt like life was spinning out of control.
I have looked back on things and realized one thing...I'm not perfect, I make mistakes, but I love my kids more than anything.....whatever happens with Kyle he will always know that we love him and are proud of him. He doesn't care that I'm not perfect, he loves me because I'm his Mom and he knows I will move mountains to get him anything he needs. He will never be alone in any of this.

OXO
Kate

We have some answers

It's been an overwhelming week. I have to start by saying we are thrilled with the teams at Nationwide...knowledgeable, kind, warm and compassionate. As I said yesterday Kyle's motility in his stomach, bowels and colon is not very good. There is though some movement...which is HUGE for us right now...the chances of it coming back or getting better are not good. The fact that it has gotten worse over time is also troubling...but we can't predict the future, all we can do is live for today...get a plan for today...and make sure Kyle has everything we can possibly provide for him to keep him comfortable and happy. At this point our only hope to get him off of TPN is to place the separate j tube (roux-n-y) and hope we can get feeds started. We won't know about the colon until we start pushing feeds...

As for the esophagus we did see reflux on the study which for Kyle is never good...I knew we would see it. We've seen a change in his lung status so I had a feeling there was some reflux going on. The surgical team said that the surgery on his esophagus needs to happen...when we are not sure. They wanted to do it all at the same time in Columbus but they wanted to study all of Kyle's films from Maine before we come up with a plan.

None of this is easy for us to swallow..our emotions have been all over the place. The thought of any more surgery on this sweet boy is almost to much to bare...

We were a little nervous about getting home due to weather but our amazing Angel Flight Pilot...Pilot Tom...is leaving work early to come get us...TODAY!

We have alot to absorb and some decisions to make...we will keep you all updated. We got some amazing cards, gifts, flowers and love while we were in the hospital. We are so grateful for you all. Thank you. I only have a few pictures to post, Kyle was not feeling well for the last few days but I wanted to show you a picture of a gift from a new friend of ours. Dr. Trent...who we have meet thru my good friend Julie..brought Kyle a new jersey from the hockey team here The Blue Jackets, he's been wearing it ALOT. ;)

XOXO

Kate

thoughts

I have to start this by saying something I said earlier while Mark and I were not overly surprised by the test results it was still very difficult to process the information and to also accept the information. It is very easy to play mind games with yoursef while you wait for test results...in your mind you play out how certain scenerios are going to go....sadly they never really work out that way. I played that game all night...

My body literally aches for him...everything hurts. He's been in pain most of the day today just from the small amount of food they tried to put thru. When they took him to the OR today we had to leave him at the doors...something we have never done...in probably close to 100 sedations/surgeries I have never ever not held him as he was put under....they wheeled him away from me and he was shaking and calling my name....thank god Mark was there...I could not even move from the spot, it broke me. He came back to us and said...Mommy, I was so sad...when I asked him why he said you left me when I had to take my nap....

The day has been brutal and exhausting...and tomorrow we have more testing in the am, this is a big one and we are hoping for some good news. We need it. We are scheduled to fly home Saturday. As of tomorrow we should have a full game plan on how we are moving forward.

We have no idea where surgery will be or how we continue on this road...my guess is we will be back to Columbus sooner rather than later...I am very impressed with the team here and feel comfortable with them helping us make some very serious choices for our sweet boy.

XO
Kate

Info that we know so far...

We have met with Kyle's Dr.'s and while the results were not a surprise, we are struggling to understand them.
The motility shows only small amounts of motility in his bowels and colon, while his colon is not as bad as his intestines, it is still troubling.
Chances are he will not regain the motility in his bowels and stomach (we already knew his stomach was not working well)at this point it is their recommendation that we place another separate J tube lower into his intestines to try to push tube feeds through. This with a combination of meds will hopefully help him get off TPN, although there is no guarantee. The fact that his bile output is so bad and with the colon results makes his doctor feel as though in the future he may need an ileostomy procedure...this is not something we want at all so we are hoping and praying we can get food into him. Worst resort is if none of this works, he would need a transplant.
We are still absorbing...he is scheduled for an upper GI tomorrow to check his esophagus and the fistula, there is a concern that he is refluxing past the fistula and the Nissen wrap which will be a very major problem if he is.

Not sure what else to say...except...thank you for sticking with us - we have a long way to go.

xoxo
Kate and Mark

No results

We have no results yet...testing didn't go so well for Kyle and he needs to head to the OR for another test in the am. After that test the dr will take all the reports and come meet with us...


More waiting....trying to get Kyle settled for the night, he was in a lot of pain for portions of the test and it seemed to take alot out of his lungs and his mental health...

Hoping for a quiet night.

xo
K

He's in

Kyle's in and sleeping soundly, they are placing the probes. Could be hours before he is out. He was such an amazing trooper this morning and didn't start to struggle until a few minutes before they put him under...at that point he realized what was happening and wanted to go home and play with his kids...

He's been under 100's of times...it's like a kick in the gut every single time. At the last minute he gets petrified and looks at you like what are you doing to me?

After he's out and awake we will be moved to the motility lab where we try to get him to lay still for most of the day. We should have some results as soon as tonight.

Thank you for keeping Kyle in your thoughts, prayers and hearts. He is a very brave little boy.

XO
Kate

all jumbled up

Kyle's testing tomorrow will basically tell us in a nut shell what parts of his stomach, bowel and colan are working...or not working. We already know that his stomach is not working the way it should what we don't know is if this has progressed into his bowels or not.

We also meet with the surgical team...can I say that I don't like their options, of course their options only work if his motility is still in decent shape...if it's not, we have some very serious and troubling issues on our hands. We have been asked about transplanting Kyle's small bowel...at this point we are not there..tomorrow's testing will tell us alot. Transplanting at this point is not an option for him since we don't know if this is a progressive disease that is affecting his lungs and bowels. At this point we think that's not the case but again tomorrow will tell us more.

It will be a horribly long day for him...for all of us...which is hard since I think we all are already exhausted. Kyle did great most of the day but is clearly stressed tonight...which is painful to watch. He has lots of questions which we can't answer right now. His lungs are stressed and I don't like that at all...he's on high doses of steroids to help with the sedation tomorrow...my guess is that's not helping his overall mental health. He keeps telling everyone that he's in Columbus to fix his belly...he wants to eat he says.

I feel very tired tonight, I am homesick. Sounds strange to say that as an adult. I want to scoop him up and make this all better, put a band aid on, take the PICC line out, remove the feeding tube, heal his lungs and take him home. I wish there was a way to express how amazing this sweet Kyle of ours is...he has so much faith in all of this....I want that, I want to feel what he does...

I am petrified of tomorrow, of what they may tell us...

You all have come through for us so many times...please say Kyle's name out loud tomorrow...even if it's just a whisper. Please.

XO
Kate

Day one

Here is what happens when you let a 5 year old color after the surgical team comes in....after listening to them for 35 minutes, Kyle wanted to draw a donkey for his friend Carissa...it came complete with sounds... ;) He felt as though his donkey was far better then the surgeons drawing of his stomach.

Rough few hours, they have started the clean out process for his testing tomorrow...sadly this is far easier then what tomorrow will bring.

Tomorrow and Wednesday are full days of testing for him, they came in today and try and prep us for what he will do through tomorrow...at this point I just want it done...we need the results so we can make a plan.

XO

Kate

Very Sleepy Boy

We all are...anxious and tired but really ready to hit the ground running tomorrow. I have HIGH hopes for this trip. There is at this point no other way to think!

Kyle's sleeping...right next to us...which is a very nice treat. I can hear him breathing, hear his IV pump going, oxygen compressor working....it's calming to me. Makes my mind rest better.

Had to include this picture..Mark was showing the skyline....I just love Big's hand in Marks...

Good night my friend...

Living life for today....with HOPE

Kate

We are here

I haven't had time to edit our pictures but I have to post a couple...our pilot...who Kyle liked to call Captain Dale was AMAZING...he's was pretty excited when we handed him a bunch of lobsters that my friend Mariah had packed up for us fresh this am to give to him....it was the best way for us to say thank you! (mariah....you guys are amazing)

So we are here and settled into the hotel. We go inpatient tomorrow morning at 9 am...I will update as the week goes on and I have a few really amazing friends who can update for me when I can't. Tomorrow is a get settled day and meet with the team here...all procedures and testing start on Tuesday.

Little tired...I was up with Jack most of the night...poor kid has the stomach flu. I swear I never feel like I'm in the right place...it was horrible leaving him today.

xoxo

K

Amazing

We have a flight...a wonderful, perfect flight that will get Kyle comfortably and safely to Columbus...I am in complete panic over getting all the last minute things we need and I don't have time right this minute...but I owe thank yous to so many people. I will post again tonight.


At times it's easy to feel alone, scared and desperate...yesterday was one of those days....within hours of that every emotion I had was in reverse...the love, support and hope we were shown yesterday is something I can't even begin to explain.

Thank you....from a Mom who has HOPE.

xoxo
K

Humbled

It's hard to put into words what has gone on around our house today...we got (or I should say what we didn't get ) After weeks of asking Kyle's MAINE CARE to make sure his medical flights would be all set we finally had to realize today that they were not going to be of any help. So it started with one sweet amazing friend to post our plea on Facebook....and the next thing I knew it caught off like wildfire. Mark and I both have spent the last 5 hours fielding calls, and emails, and facebook messages from people who are beyond so willing to help. It's humbling and emotional.

You see this is our chance....we dont have more time to waste, Kyle needs this. We need to see this team...we feel as though they are our last chance. Kyle is our world...he's our baby....he's strong, and brave and amazing. I sometimes feel like words can be empty, but please know...we say with love and heart wrenching truth...thank you.

We have 3 strong options right now...three different groups from all over the country trying to help us...I will update as soon as I have more.

XO

Kate

We need help.

I hate asking for help. We are scheduled to be in Columbus for Kyle on Monday...we need to be there by 9 am....our insurance dropped the ball and did not get the flight we need. Kyle can not fly commercial, he is on TPN 18 hours a day and also on oxygen. We as of now have no way to get to Columbus. We will drive if we need to but we are extremely concerned about Kyle riding in a car away from a hospital for 16-18 hours.

Please. If you know of anyone who can help I would be so incredibly grateful. We have contacted Angel Flights and they were so wonderful but their mid west chapter needs a 5 day notice. We missed that by today.

XO
Kate

I lied....

Total in your face lie last week. I hit the mall which I rarely do at this point, I've been home alot more with the boys since pulling them from pre-school...trying to keep Kyle as healthy as possible. I realized when I got to the mall how long it has been since I've been there....stores were gone and new ones are coming (yipppe Amy..Sephora!) I ran into a women who had a baby in the NICU at the same time as Kyle....she is so nice and every time I run into her she asks about Kyle...her little boy breezed thru the NICU but still struggles with asthma...(9 months..babies need 9 months!) As soon as I saw her I froze...literally one of those moments where I'm hoping she doesn't notice me...not that I didn't want to see her, I just didn't want her to ask me how things were going. It went something like this...

Me...oh Hi how are you?
Her...we are great...How's Kyle
Me...oh he's great, things are so good...you?
Her...oh the same, asthma issues but overall great!
Me..that's so good...I'm so happy for you!
Her...me to, so happy that Kyle's doing so well, gosh I used to feel so bad for him in the NICU
Me...um yah well...sorry I'm late, really happy for you that things are going so well! Take care...

Total innocent conversation, well meaning...but I walked away feeling like a big ole piece of...well you know. I realize that I shouldn't feel bad, I mean really it's my business if I want to talk about Kyle but it's been bugging me ever since. We aren't good....things are not ok.....We have an entire hospital room in our house, we live on pins and needles and adrenalin....and since that conversation I have felt miserable.

As tough as this is....it's ok. I'm so damn grateful for him..for his strength and courage. I realized that I didn't want her to know how hard it's been because I was taking it in that moment personal....that I have failed him because he's still so sick....but it's not about me. It's about him, and I am so damn proud of him.

xoxo
K

For those of you on Facebook...Kyle has a new fan page... pretty sure he already has more friends than I do! ;)http://www.facebook.com/pages/Team-Kyle/296197553028?ref=mf

One step at a time

So we had to pull Kyle's g/j tube on Friday and insert a g tube...his pain level was to high and since his pain was so bad we had to stop feeds anyway. The only issue has been getting his meds into him, we have seen a change with his lungs which is not good...my guess is that since we are having to use his stomach it's irritating his lungs. We have seen this before but it's a little more concerning since he will be put under at least 5 times next week and we need him at his best. I hated pulling the j tube...felt like defeat. But we couldn't control the pain and I knew it was the tube. Why he can't hold on to a j tube we don't know. But that's something I hope we can get addressed next week...yah Columbus next week...I'm beyond anxious. I hate what he'll be put through..but we have no other choice. We need the testing, we need to know what we are dealing with. He can't wait to go, sweet boy keeps telling people that he's "going to Columbus to fix his belly" gosh I hope so. The plans are slowly coming together, still waiting for flight confirmations and some last minute details but we should be all set by tomorrow.

XO
Kate