Thursday, February 12, 2009

I could cry

Ok...I did cry was to say a very frustrating day. I won't rehash the whole thing..let's just say after about 10 phone calls I realized that Kyle's referral for the "god" doctor at Boston Children's Hospital was not submitted 2 weeks ago, it was sent on Friday. After going around and around I finally got his nurse secretary on the phone and asked (ok begged) her to please schedule us an appt without all his paperwork (which she still didn't have) She was so know the nice kind that as your telling your kids story she's so nice that you start to cry..she had all of Kyle's information from when we were there last and she made an appt for a consult the second week of March. After the consult we will get the date for all the inpatient testing. If we make it that long...I can tell you something is not right..his stomach and bowels are not acting right, lots of retching and gagging, lots of residuals from his g tube. I feel very helpless..he now asks me "to please help him" when he feels a bad episode coming on. It is to say very heartbreaking. So we wait and we hope and we pray to the man upstairs (who I'm still working on trusting again)

On another all three kids woke up with fevers this am, Mark is on a business trip, and I'm almost out of Motrin. It could be a long day...they are all being amazing, none of them feel good (esp. Kyle) but they are being patient and I'm so thankful for that. I have to add a of Kyle with no oxygen on his sweet face. The boys had just had a bath and Alex was on her way to the dance with her Daddy. Kyle's hair was a little out of control, I think it's time for another hair cut!




McTriplet Mommy said...

Love you, Sweetie.


Denise said...

Oh Kate...I can't even imagine. If I could beg, borrow or steal to make this all ok for you - I would in a heartbeat. In a heartbeat.

Huge hugs to you.


mytwolittlewonders said...

Oh honey, I am so sorry they are all sick......and that you are home by yourself.

You know, I think if you don't get some answers soon from Kyle's doctors....your friends just might have to fly out there and light a fire under them. I'll bring the matches.


Aileigh said...

I just want to reach out and hug you... just know that you guys are in my thoughts! I wish there was something I could do.

Love and Hugs,

Stephanie said...

kate- i wish i was home to help out, im so sorry everyone is sick!i think about you all the time and pray for kyle constantly. i cant believe how grown up alex looks! miss and love you all, steph.

Robin said...


I am sending you big HUGS! I wish there was something I could do or say and make things better. Just know we are all praying for you and Kyle.


Lauren said...

Shonda is bringing the matches and I'm bringing the kindle.

I can only imagine your heartache. I'm so glad you had such a nice nurse on the other end of what must have been a very frustrating call to make.

I trust your mommy gut that says something isn't right and will be sending all my good thoughts your way and continue to hope that relief is around the corner.