Life with the oldest sister who loves theater and fashion, a boy who has Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius, but thinks fishing and electronics rule. The most amazing middle-child-sister-aspiring artist. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum who loves littlest pet shops, American girl dolls, playdates. And one yummy baby brother who has a coarctation and bicuspid valve and thinks super heroes are the best.

Tuesday, January 22, 2008

A bug

Well it's been a rough day so far... Alex has been really sad today and whines and feels horrible. He ended up throwing up all over me and running a temp. So they drew cultures and gasses to see what kind of bug we have... It looks like we will be keeping the picc, and will know what type of antibiotics to give when we know what we have... I went with them yesterday to see the echo and the clot. The clot is getting a little smaller. It was interesting to see because it looked like a load of laundry in a dryer tumbling around and around inside the left ventricle...I was able to meet Michelle and Tom today.. It was nice to talk to them and have a nice break from the stresses... Thanks for stopping by...They are expecting a little one with HLHS... They are both so much stronger than I ever was... So way to go you guys....Well if we hear anything else we will let you know... As for right now we don't have a go home day anymore...We will just go there when we SHOULD.....


Anonymous said...

I am so sorry to hear that little man is sick, I hope you had a change of clothes, atleast the laundry room is close to your room! Tell Alex Aunt Juli says he is still gounded! Let me know what we can do, and I will be by soon with his hat.


Anonymous said...

I am sorry that things are not going as positive as they first were. Just know that you waited a long time for this surgery to take place and now he just needs a little longer time at the hospital to make sure he won't have a return trip in the near future.
Today when I talked with you I could tell the stress you were under trying to juggle everything. You are doing a great job. Keep the Faith and know that I am keeping your family and especially Alex in my thoughts and prayers.

Anonymous said...

hang in there sweetie. you've got the right perspective. know we're rooting for all of you!


Anonymous said...

I really don't think anyone could ever be as strong as you have been through this all. You totally amaze me! You are so much help to all around you and you are blessing the lives of the people you meet that will soon be doing what you have done. You are such a great example of strength. LYL

Anonymous said...

I'm so sorry that Alex has the "Icks" and that your stay has been extended. Poor kid (and mom)! On the bright side, at least you're on the floor and not in the PICU. There's nothing quite like waking up to an audience of doctors, trying to clear the "sleep fog" so that you can comprehend what's being said, and sound coherent yourself! LOL Good luck and hang in there! We will keep you in our prayers.