THERE'S NO PLACE LIKE HOME

Gracie was finally discharged yesterday; just a few day's shy of 3 months.

It was very emotional leaving the hospital. We were very excited to come home, but UCSF has been a huge part of our lives for nearly 3 monts. Some of these people have become like family to us. I was surprised at how many gave us their home addresses and phone numbers to keep in touch. One nurse said she's available to babysit whenever we need her... and I don't think she was kidding.

We arrived home around 3:30 yesterday and were greeted by our very excited older kids and Jackie's very excited mom.

On the way home we stopped by the pharmacy (who had been warned of our coming in advance) and overwelmed the poor girl behind the counter. A couple hundred dollars, and nearly an hour later, we left with a large grocery bag of medications. I think that the pharmacist was extremely happy to find out that we were already comfortable working with all these medications.

Five minutes after unloading our SUV, into what had been a clean house, we quickly realized that we were not as comfortable as we had thought. The medical equipment we needed was delivered before we arrived, so we were not 'properly' trained. I took to the manuals provided looking for simple directions, praying for divine inspiration, and finding nine different languages that were all pretty much equally unusable to me.

There are only six buttons on her feeding pump so there are only so many permutations... and the manual did have some diagrams that eliminated most of them. So, after several dozen error messages it was working. Grace got to eat her first night home... albeit an hour late.

We got her medication chart up; her supplies organized; medications refrigerated, or not, as need be... and started out behind. By the time we got done with one thing it was already past time to start the next. Those nurses make it look so easy. After a couple of times through we got the swing of things. The oxygen tanks which looked to be the most difficult to operate turned out to be the easiest, and the hardest is giving Grace her injections.

In the hospital they check all the parents to make sure that they can handle all of the child's needs before sending them home. In Grace's case this meant that, in addition to all of her medications and the oxygen, Jackie and I had to learn how to put in a NG tube to her stomach through her nose. Jackie did great. Me, not so much... The good news is that it only has to be replaced every thirty days, unless Grace were to pull it out... which she did, less than an hour after getting home. Jackie got right to work on it and had it back in promptly. My inclination was to get a roll of duct tape involved.

Jackie's awesome friends from her MOPS (Mothers of PreSchoolers) group arrived shortly after with a very yummy dinner. Again, thanks go out to all of you who have helped make this difficult time so much easier. We're home, so feel free to stop by when you can (unless your sick, or thinking about maybe catching a cold - if so, then send a card, an email, or wave as you drive by the house). Just come by and see Grace, she'd love to meet you and say thanks.

David