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