Coasting along

Day to day...hour by hour at times...coasting....waiting....I feel like we are truly living day to day...Kyle has been so up and down that I'm finding it hard to keep up. He is still on the IV steroids and we are concerned that this might be the best we can get his lungs until surgery. He's getting tired very easily and complaining of his "breathes" as he calls it. His color hasn't been great and he is back on O2 more....which he is ok with...(this is both good and bad) Still on the 20 hour tpn...which he also has been pretty good about. His blood sugars have been to high which is a concern and we are hoping they will get better after he's off the steroids.

It looks like surgery the second week of May, it's a compromise between his GI dr and pulmonary dr...GI wants the surgery now, while pulmonary is more cautious with his lungs. At this point I'm not sure how I feel, so many emotions about this surgery...my brain is having a hard time processing it. I don't know how to prepare him for this, he's 5, he's smart and this will test his limits...I think it will test all our limits.

Jack and Alex are good, so patient.... Gosh I wonder what I would do without them...

Love

K

Yesterday

Kyle's test went smoothly with no big surprises. Things pretty much looked the same way they looked when we took a look in Columbus....which is good. Moves us one step closer to surgery. At this point we are in the one month countdown. As well as things went yesterday, we are paying for that today, last night and today have been rough on our little guy....you just can't put that much liquid into a stomach that doesn't work...it increases his pain level to an all time high.

Today we are off to Mimi and Papa's house to visit with my sister and her little ones, the boys are over the moon about it! Should be a great day!
I'm hoping to take lots of pictures!!
xoxo
Kate

Trying to move forward, yet feeling stuck

I should start this by saying we had a great weekend....we all got some sleep, we loved on the new puppy, we hung out as a family...it was great. The only issues have been the on going issues with Kyle's lungs. Any exercise or activity is leaving him winded and in need of extra oxygen and a treatment. We saw pulmonary today and he was not very happy with Kyle's lungs and energy level. It's another week of IV steroids and an additional 3 days of antibiotics...all of which play havoc on Kyle's body. Basically it's another week of 22 hours on the IV. It's hard to explain that to Kyle, I feel like all I do is try to reason with him....I try to keep it fun and I'll admit I bribe him, anything to stop the tears from falling. We now start the countdown of a month until surgery, he has to stay healthy or we have to start over, his pulmonary dr is concerned that since he is refluxing this may be the best we can get his lungs...which is a big concern...his surgery is a big one, he needs to be perfect. Him not being perfect is a very scary feeling.

We head to the hospital in the am for an upper GI, the one test that Kyle hates...it's going to be a long morning and I know we will both be happy when it's over. Hoping we don't see more reflux then before and hoping that we don't see any major red flags that would force us to move up surgery.

On top of that Kyle's labs weren't great this week...his White Blood cell count is very high...hoping that is not an indication of an infection coming...I've been driving him nuts today asking him how he's feeling, pretty sure he's ready for a break from his Mom. :)

Tonight I'm sitting here in front of the computer and usually the words come so easily to me...tonight not so much. I'm anxious...nervous, I hate to think that I'll feel this way for the next month....yet then I realize a part of me has felt this way for 5 years. The ups and downs...both are extremes, the highs feel so amazing but the lows feel so incredibly low.

XO

Kate

Trying to find the calm

~When you come to the edge of all the light you know, and are about to drop off into darkness of the unknown, Faith is knowing one of two things will happen : there will be something solid to stand on or you will be taught how to fly~

I stole this quote from one of my favorite blogs...it's an amazing blog full of hope and love and the most adorable sweet little girl named Zoey, her Mom...well her Mom is something else. Strong, beautiful, inspires me to keep going.... you can check out Zoey and her Momma here.... http://littlewonders-heather.blogspot.com/


We've had another tough day...Kyle's TPN is now at 20 hours a day plus all the other meds, he was off of his IV for a little over an hour today, pretty tough on a 5 year old. Our GI dr called and we had a long conversation, none of it good.... it left me feeling horribly sad. M is still out of town so I havn't been able to fully fill him in but when I do I will update more on here.

After a long day I was putting Kyle to bed and he says Momma...your the best Mommy ever...ahhh...this is after blood sticks, and TPN and meds that make his belly hurt....this sweet boy has so much love in him, I know that he couldn't possibly understand the timing of telling me that but I will never forget how it made my heart feel to hear it....because I do try to be the best Mommy to him, I'm not always...I get tired, I lose patience....I mess up....but he loves me. Makes the bad day all worth it.

xoxo
K

Ramblings

This will be quick...I think ;) It's been a rough night, not any major changes or shifts...just the small things that seem to be adding up. Because Kyle is sick so much he hardly ever complains...if Kyle is complaining of pain or not feeling well, it's concerning. Tonight he was doing both, chest pains again, belly pains again and as I tucked him into bed he looked at me and said...Momma...I'm still sick. His sweet strong face crumpled and it hurt me to my core. Ahhh, breaks me in two. Just came back from his room to check his blood sugars and they are way to high again...something is going on... we just don't know what yet. I'm feeling very concerned. Very worried...I know him so well...something is not right.


Hoping for a restful night and some answers tomorrow.

XO
Kate

Banging my head against the wall...or chair...or anything in my path

That's how I feel today, I'm feeling the increasing pressure of Kyle's surgery looming and he's still really sick. Back to the Dr today and it's another week of IV steroids and IV antibiotics...back we go to being attached not only 18 hours a day to an IV but 20 plus...so hard on him. Yet I have to keep remembering how grateful I am we are at home doing this...still going strong. Still concerned about his blood, waiting on his labs from today..he's now putting blood out his bile bag at night which is not the best sign...

That's my short update for tonight...I'm off to snuggle with Alex for a bit...

XO
Kate

I know...I know....but if you could see the kids faces...well...that's all it took!

We totally in love with Jake Thomas....I guess we all needed a boost and this is the one we picked...

XO

A long week

It seems and feels like the last few weeks have all run into each other, we are still struggling with this nasty respiratory infection (both Kyle and I have it) Alex had a fever on Tuesday....strange...came on all of sudden and then was gone by the am....crazy, I'd say we've been more sick this last month then all winter. I think the steroids that Kyle and I are on are getting us both down and it's been a frustrating process.

We got to meet with Kyle's entire team on Tuesday, pretty much spent the day at the dr's office. But it was good, we got more info from Columbus and got the opinions from the team that knows Kyle best. Have I mentioned my love for Kyle's GI dr lately... Amazing person, amazing doctor. Anyway, we are keeping a very close eye on some of his labs, little concerning this week but we will know more on Monday. As for our meeting with the surgical team, I think that went pretty well, we were surprised by some of the recommendations and not prepared for them but in the end I think it will be the best for Kyle. We are looking at doing both his surgeries in the next month at the same time. It's a good move for Kyle but will make the surgery and recovery much harder. But it can be done all at the same time, so while it will be a hard and difficult surgery our sweet boy will only have to go thru it once.

Both Mark and I have that sense of dread right now, while we know we it has to be done it's still so heartbreaking so think about. I feel like we just went thru this in November and yet this surgery will be more than that one...I'm petrified. I look at his sweet face and it kills me to think of him going thru more....Our baby who has endured more than I will in a lifetime will have to be once again put thru so much. It's hard to wrap our brains around it. None of it makes sense to me, yet in the same moment I'm so thankful, grateful, overwhelmed that we are still fighting this battle....

XO
Kate

Friends

The last few weeks have been trying, I found myself sick with sick kids and alot of time laying around and do lots of thinking. After a long day today I feel overwhelmed and sad.

I have the most amazing group of friends, god love them. It's not always easy to be my friend...I don't always return emails, or phone calls or text messages. I forget birthdays and anniversaries, I miss engagements and births and sadly deaths.

Yet, they keep coming back...they continue to love me and support me and hold nothing against me.

It wasn't always like this, there used to be so much more time....yet the last few years that time seems to go by so much faster.

So for those of you still hanging in there...thank you...thank you....thank you....this would all be impossible without you.
Love
K

3 weeks and counting

Kyle is still sick...yah 3 weeks. I say sick...actively sick I'm not sure about. But coughing and retching are still really active and I'm starting to get more nervous. Still on steroids and I see no real big improvements. We have dr's appts all week so I'm hoping they can help. We meet with surgery and GI tomorrow, both appts have me nervous and keyed up. I'll update after those appts.

Easter.....I have to say I was nervous about Easter, both Kyle and I have been sick and neither one of us were up to much. Mark's sister was hosting Easter which was a huge relief and took alot of stress off of us. We went, and I'm so grateful we did. The kids had an amazing time playing with their cousin Ethan and Mark's family is amazing to them. The day was wonderful, beautiful weather and great company...it was exactly what we needed after the last few weeks. Kyle is really beat today but that's ok, it's a down day for us...the giggles that came out of that kid yesterday was plenty worth all of it. Watching him play....watching his face....he truly is a kid at the age of 5 that has learned how to appreciate life and all the small little good things it has to offer.


Alex....oh my girl. My sensitive kid, who clearly had a lot on her mind last night. Lots of questions at bedtime about heaven and death and what happens. It was hard to admit to her that I have alot of the same questions. But I promised her I would think alot about it and her and I would talk soon...so much on her little mind...again a child who is wise beyond her years.

I hope you all had a magical Easter, we did.

XO
Kate