hurt

I keep saying in my brain day after day, I can't do this....it physically hurts to watch this....my heart is literally aching and my head is pounding....he looks at us with pain and such sadness and we can do nothing. I realize before anyone jumps that we will continue to do this, to fight for him but there are those brief moments where my breathe is gone and I question if I'm strong enough to keep watching this.

Kyle is pretty much the same as yesterday, pain and lungs are still a large issue...still in the ICU....he will have a contrast study done tomorrow to make sure his new anatomy all looks good still. There is a concern that when Kyle is complaining this much there is always a reason. We are becoming very worried about his mental health, he is very sad...no strength....we got him into a wheel chair and went up to the Children's floor to try to get some happiness into him, it didn't work but I'm hoping it was just enough to keep his spirit going. He is missing "his kids" and wants to see them so badly. I know once we get upstairs and they can come in that will help him so much.

I need to keep saying that our Kyle is strongly then any adult I have ever encountered...he continues to amaze us with his bravery and kindness....

XO
Kate

Day 5 in ICU

I don't have any other title at this point, it seems like each day we think , so yesterday was bad but we got thru it and today will be better....we thought after Friday's emergency surgery that things would improve...we were very wrong. Saturday morning brought lots of pain and discomfort, after another trip from our good friends the anesthesiologist Kyle was able to rest for about 2 hours....and then it went very down hill. He started to gag and then started to vomit large amounts of bile, (Kyle has never vomited in his life he has always had a Nissen wrap to help prevent reflux) his sats dropped to the 40s and he was blue...it took over 15 minutes for us to get him back under control and by that point he had aspirated the bile and was really struggling to breathe...it took hours of back to back neb treatments and lots of extra o2 to see some improvements, it was one of the worst incidents with Kyle that I have ever seen. I had this horrible feeling that we were going to lose him.
We are still having lung issues today but I am so hoping we are over the worst of it, the hard part is we don't know if it's going to happen again. So clearly we won't be leaving the ICU today...We will see the surgeons and GI again this morning to try to figure out why this happened.

Hoping for calm and peace for Kyle today, he's gotten more pain meds and they put some additional pain control in his epidural. Will update tonight.

Kate

Feisty

There is a long standing joke between us and some of Kyle's medical team that he is "feisty"....he is very strong willed and has been since birth, we say all the time that this quality in him has carried him thru some of his toughest challenges...today I was once again thankful for Kyle being feisty. Since he came out of surgery on Wednesday night he has been in almost constant pain. He has been telling us for 2 days that the pain was horrible and that he was "sick"....

This afternoon during a bed change I looked down and saw stool coming out of his G tube..the tube connected to his remaining stomach. Major scary red flag, his temp was way up and his pain was unmanageable. The surgeons were by his bed quickly and we were told that he may have a leak somewhere and his stool was leaking from the colon....this is very dangerous and life threatening. He was brought into surgery and it was discovered that the section of bowel where they placed the J tube had collapsed and was obstructed. They had to remove the j tube which is a concern but this was a much better problem then what we thought.

He is now back in ICU and is comfortably sleeping.
My head is so foggy and my heart still hurts....but I am so incredibly grateful that our Kyle is feisty and we still are fighting this fight.

XO
Kate

A fog

The last few days have been a total fog, we went into surgery hoping for one outcome and we got a call from the OR 2 hours into Kyle's surgery with a different plan. The pledgett/mass of surgical material that was in Kyle's esophagus had attached itself to his liver, stomach and the lower half of his esophagus it was completely embedded and had destroyed the top half of Kyle's stomach. There was no chance to save the tissue and so they had to detach Kyle's esophagus from his stomach and attach the esophagus straight to Kyle's intestines. His stomach is now completely bypassed. This was bad news to us, clearly. The news was shocking at first and then we had a chance to process the news and we are trying very hard to see the positive side of this...he will have NO reflux at all which is really good news for his lungs. We are hoping that this may cut down on his stomach pains (his stomach is still there and does still empty into his intestines) They did put in the J tube so he now has a G tube and a J tube...2 tubes on his tiny belly. His body is very swollen still and we are still struggling with pain issues. He went thru so much, so while we are prepared logically for the pain the reality of the pain is so hard to watch.

We feel overwhelmed and heartbroken that Kyle is in so much pain. We keep hoping that every surgery, every test, every new medication will give our sweet boy some relief....We are keeping that hope and faith alive that this will all be worth it for him....that this is a new beginning for him. The next few days will be rough but Kyle as always continues to amaze us.

XO
K

Update from the ICU

It's been a long day...I wanted to jump on and thank you all for the prayers, and love and continued support that you show our family. I will be updating in the am with a more detailed post, surgery did not go the way we had hoped but I do want to get more details and understand some things before I post them. Kyle is in the ICU and is in and out of sleep, he has some pain and is extremely swollen but he is doing as well as can be expected. His temp is up so we are watching that closely....

Again..thank you...our sweet boy is beyond brave. His spirit and love continues to amaze us every day.
XO
Kate

Quick Update

This is Carissa updating for Kate -

"He's out and stable. We haven't seen him yet but he's in the ICU and doing well."

It has been a very LONG surgery and day for all of them. Please keep them in your prayers. Kate will update more when she has time!

Moved to Wed

Just a quick update, due to an emergency with another patient Kyle's surgery was moved to Wed. The big bummer for Kyle was we didn't find out until after we were at the hospital and ready to go...We have lots of mixed emotions but we are going to take advantage of the next 2 days and enjoy them.

XO
K

Not ready

I have realized through this 5 year process with Kyle that no matter how hard I try I can't stop time, I can't freeze it....So many times this weekend I wanted to do just that, slow down the time, make the days longer. But at the end of the day I know that Kyle needs this, he knows he needs this....he pulled out his suitcase this morning...ready to pack for tomorrow. We have spent the weekend together, doing things that normally we would probably shield him from, like swimming...I was a wreck petrified he was going to slip or something, but he was so happy that it made it all worth it. So this is short, I'm off to play wii with the kids! :) One of my bf's will be updating the fb page and this page tomorrow....as always thank you for your support, love, thoughts and prayers.

xo

K

Oh and yes..the goggles are missing a lenses, but he didn't care, he just wanted to look like his sister! ;)

Wordless Wednesday

Sleepy Ramblings.

I am tired. Should I start a blog like that, I'm not a very good blogger...(do you know they have "rules" for blogging) my guess is I break all the rules, I don't update enough, my writing is horrid, I never edit my pictures...the list goes on and on. I actually had someone tell me how I could be getting more people to my site, more hits, more interest....crazy huh?!

I started blogging 3 years ago, isn't that a long time. I started blogging in a wonderful safe place surrounded by other Mom's with sick children. It was the only place I felt safe to be me. I noticed that now that I blog here I am more guarded. Why?! I sometimes think I am to scared to put the hardest feelings out there, worried about others reactions.

But tonight's its a necessity, We are in the countdown for surgery. Next Monday at 8:30 am Kyle's 14th surgery will begin. I'm sick over it. Literally. I'm grumpy and stressed and feeling pressured to do more for him, love him more, snuggle him more, breathe him in more, rub his face, his arms, his legs. I find myself telling him over and over that I love him, that I'm proud of him....I'm petrified that something will happen to him and there will be no more me after. No more listening to his sweet voice, no more laughing, giggles, hugs. During every crisis someone will say....you have two other children you will survive if something happens to Kyle....but they seem to not understand that we can't replace one child for another....that my connection is different, my entire day surrounds his needs....they have for the last five years....

Kyle is sick, horrible cold, that needs to be cleared up by this weekend or surgery will have to be postponed. Which at this point would be very difficult. He needs the surgery...badly, we aren't moving forward only backward. Our Kyle....needs this.

Love

K

Wordless Wednesday

Kyle's in Guam

Ok...well not literally....but check it out! http://twinbittersweetmemories.blogspot.com/

Mommy

8 years ago when I became a Mom I read all the books...searched the Internet....asked tons of questions. I was so ready for a baby. The first year had it's ups and downs but Alex was a perfect baby. (she was and I'm not just saying this because she is mine a text book perfect baby! Although trust me, she's making up for lost time now) After all the reading and the questions and the Internet search I was not prepared for how the kids would make me feel. I don't think anything, anyone can prepare you for what happens when you become a Mom. I love Mother's Day...really I probably drive my family nuts in anticipation of it.....but it's not because I want a day all about me (;) although come on it rocks!)....Mother's Day makes me slow down, the normal day stops and I have time to really look at my kids, listen to them a little more, snuggle them more, love them even more. It's a day where I let everything else go and take the time to realize how incredible life is, how incredible it is to be their Mommy. What an honor.

Our life isn't easy, it seems to get harder and more crazy every week.....but I can't imagine life without these 3 beautiful babies. My heart aches when I think about what each one of them has been through, but they are strong, and loving, and kind. Amazing.

XO
Kate

This face....

There is something about this face that makes me melt....

Kyle and surgery

Yesterday was our last GI appt before Kyle's big surgery at the end of the month. It was emotional....our GI is amazing and she always fights for the best for Kyle, I trust her fully and her advice and opinion matter greatly to us. She's nervous about Kyle's surgery....we all are.

Kyle's surgery will have 3 parts to it, he's getting a permanent J tube, which will be right below his G tube, at this point the J tube is our only chance of getting Kyle off the TPN. His PICC line will be removed and a central line will be put back in. We have mixed feelings on this, I like working with the central line better (it's more secure) Kyle has a bad habit of getting infections with his central lines. So we'll have to see how this one goes. The third part of his surgery is his esophagus, he has a fistula (two tracks) that leads into his stomach, so instead of having one opening into his belly he now has two. This is from surgical material that eroded his esophagus and has planted itself inside of his esophagus instead of on the outside. This is pretty major and could cause the most complications. He could lose part of his esophagus. I feel sick over this and I am very concerned about this part of his surgery.

We started talking to Kyle this morning, just casually that he will have surgery soon and will have two tubes instead of just one, of course that sweet boy just wants to know if the surgery will make his belly stop hurting...he continues to amaze me with his strength and spirit. After 13 surgeries he would have every right to pitch a fit and be upset....but not our Kyle....his eyes were so bright this morning....amazing how you can get strength from the littlest person. I am so proud of him.

In other news, we did our March for Babies on Sunday..it was beyond amazing. Because of so many of you I passed my goal and it felt so good. We walked with family and friends....who I hope know how much I appreciated them coming out early on a Sunday and walking 5 miles! :)

I am attaching a picture of our shirts, we are starting a new fundraising for the March of Dimes Share your story website and Angel Flights, all our proceeds will be split between these two charities, if your interested in a shirt.... you can order one at TeamKyle2004@gmail.com, they are 25.00 and shipping is included, please include your address and size of shirt (we have all sizes)...

Love

K