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 ;) !

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

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

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

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

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....

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... :)