Wednesday, September 24, 2008

The little things we take for granted

When Ryan had a fever we did what almost all parents do. Gave him some Motrin and hoped the fever did not develop into something nastier, watched to make sure it did not get dangerously high, and if it lasted for more than a day or two call the pediatrician.

Sam developed a fever early this morning. Not a high fever and it was very warm in the house, not a big deal. Later in the morning the fever went over 100. Bad news for Sam, the fever really is a fever. Alarm bells start going off in your head. Did we get jinxed by the all of the doctors and nurses in Boston congratulating us of not yet having a line infection? Does he just a have a cold? Does he have the flu? Is his brother messing with us and wrapping him in a heating pad when we aren't looking?

Since Sam has a central line we can't wait to find out the answer and Sam has to be started on a round of IV antibiotics. Great. More poop that normal, which is already too much. We can hear the skin on his but breaking down. Then the gaggy pukey thing kicks in.

So back into the hospital Sam goes. We got to see a few familiar faces from the NICU today. It is hard to be back at Children̢۪s Hospital of Wisconsin - Fox Valley. So many bad memories of a much tougher time. If only they had made the pediatric floor not so similar to the NICU I might not have had to endure the felling of traveling back in time a few months. It is nice to see all of the people who took such good care of Sam, we just prefer running into them at the grocery store.

On the bright side it was nice to have so many people who had not seen Sam in awhile get to visit with him. They were all amazed at the progress that he has made.

We planned for something like this to the best of our ability. There are certain logistics involved with coordinating Sam's care through three different facilities that were bound to not work perfectly the first time. Hopefully all of the kinks are worked out now. Then there is the non FDA approved Omegaven. Still have a few kinks there to work out, but we made it through and Sam will get his full dose of Omegaven each day until he is discharged. All in all this did not go too bad for a first run with no practice.

Sam will be in the hospital until at least Friday when his blood cultures come back. Hopefully we will find no infection and we can go right back home.

Today we learned that Gavin, who's story we started following recenty, lost his battle with liver disease Monday evening. Gavin was awaiting a liver that never came. We have been lucky so far and have worked our way around needing a transplant for Sam. We might not be so lucky some day. There are far too many people waiting for donor organs that never get them. If you are not an organ donor, please register - there is a link on our homepage, and make sure you let your family know of your wishes. Gavin's story can be found on the Little Wonders page under Gavin S, or at

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