Thursday, June 18, 2009

Admitted

Just a quick note to let everyone know that we were admitted to Children's Hospital in Milwaukee early this morning after spending the night in the ER.

Sam developed an infection in the tissue around his central line. He was just taken back to surgery to have his line removed. We will be here for at least a few days as they would like to get negative cultures before placing a new central line.

I will update more once I have a chance to eat and maybe get a few minutes of sleep. Sam's fear of doctors/nurses/strangers has been a little difficult to work with overnight and this morning, hopefully he will sleep for awhile after the surgery.

Thursday, June 4, 2009

Overdue Update


Almost 15 months old already?

We have been busy, busy, busy. The outside of the house is almost done, we have started the landscaping and have a big mess in the yard. The house has been sucking up our free time lately.



No change in Sam. We had his motility test done which was a complete waste of time. The test is done if you vomit. What was the point of that?

His vomiting continues to be an issue, but has been a little better lately. They are planning on doing an MRI at the end of the month to try to rule out any neurological reasons for the vomiting. We aren't going to wait for that and are starting Sam on the combination of medications that Bo is receiving to see if it helps. If it does we will cancel the MRI as it is really hard on him to have to be put out for another useless test.

We have moved Sam's TPN cycle down to 14 hours which gives him 10 hours a day TPN free. He will now be getting hydration while he is napping. This leaved him connection free for most of his awake time every day.

We spent the past weekend in Chicago with Bo's family. (For those of you who do not know, Bo also has Microvillus Inclusion Disease) It was nice to get away from normal life for a few days and spend a day with another family who has had such similar experiences as we have. They are such a huge help to us and it was good to see them, hopefully we will be able to see them more often in the future.


Jose, Bo, Kinn, Ryan, Deb, and Sam hanging out at the Museum of Science and Industry. Having all boys makes choosing exhibits so much easier. Trains, Trains, Trains...


Kinn, Bo, Deb, and Sam. Not bad for two boys who weren't supposed to live... Amazing what a little love and a lot of Omegaven can do.


Sam didn't really show much interest in Bo, except to use his butt as a pillow.