Saturday, November 22, 2008

What's going on now?

So, Josh was admitted back into CDH last Thursday. He went in for a routine checkup on his head shunt -- he's supposed to see his doctor every two weeks for the first six months after the shunt was placed. Josh has had this little white spot on the shunt site for a while now that looked fairly benign -- we had talked to his pediatrician about it and he assured us it was no biggie. We have been putting this antibiotic ointment on it ever since the surgery and we knew it wasn't an infection. But the white spot kept getting bigger -- and whiter. It was like bone white. So, when Sandy took him in to see the neurosurgeon, she was told (by the nurse) that the white spot was actually the exposed shunt. The nurse told Sandy that she had never seen this before -- which leads me to believe that something didn't go right with the original surgery. The same doctor who performed the first surgery performed surgery on Thursday to take out the shunt, and he's scheduled to perform the next surgery to put the next one in. The problem is that this guy hasn't explained the situation or what has happened at all to Sandy. Of course, I was out on a business trip when this all went down. So, now that I'm back, I'm going to drill this jerk and I'm probably going to cancel the surgery on Monday to get a different doctor.

At least this stay will give me the time to post some more pictures of the boys; something that I am sorely behind on.

Friday, November 7, 2008

A Note to Josh's NICU Aunties

To Tina, Bethany, Amy, & Stephanie:

Josh, Sandy, and I (well, and Joey too) can never express our appreciation for you and your presence in our lives. Of course, I would never wish for my child (or anyone's for that matter) to have to spend time in the NICU, but I am glad that while we were there, we got to meet you. I take the relationships we formed as a very large and completely unforeseen gift that Josh gave to all of us. I was so surprised when I realized that you guys actually cared about him -- I mean how many nurses really invest themselves in their patients the way you did? Leaving Josh at the NICU was so hard, but man did it feel good to know that you would be there with him.

There are some things I'll never forget: Sandy and I balling our eyes out all over Tina the day we learned about Josh's diagnosis; the tender care that Bethany always showed Josh (Monkey Covers); the talks with Amy (It's dammit! Say it right!); and the great Halloween costume that Stephanie MADE for Josh (Corduroy the bear).

You guys are forever in our hearts. Please, please keep in touch with us.

Josh's Discharge (November 6th)!

Who could believe it? Josh finally came home after 126 days in the NICU! So, we brought some bagels for the NICU crew, some gifts for the awesome nurses, and got over there at 9am. There was a little delay in getting Josh's paperwork together, but it wasn't a big deal. It was so weird to see Josh's room empty -- we've been going there every day since the boys were born (July 3rd).

We were so happy to have Nurse Dietrus (Auntie Tina) there for Josh's big farewell. She's been with Josh since the beginning. She's shown him love as well as provided him medical care. She's been a friend to us, a support for us, a teacher, and she can swap snarky comments with the best of em.

We were home a little after 11. Nonna and Grandpa were there with Joey waiting for us. So, we got home, and introduced Josh to his home (which, of course, Auntie Christy and Uncle Chris had decorated). A short while later, some of Josh's home care nurses came over, along with Paul from the medical equipment provider. We all went through Josh's care & needs, reviewed the use of the equipment, and organized ourselves.


Rooming in with Josh -- November 2nd

So, in order for Josh to be discharged from the NICU, Sandy and I needed to prove that we are capable of handling Josh for an entire day. What does that mean? Well, it means that we can handle doing Josh's trach care & G tube care, give him his meds on time, and do all the regular baby stuff (bathe him, play with him, exercise him, etc). So, we scheduled all day Sunday (November 2nd) to get the family together. It was tons of fun -- and Joey got to be with his brother as well! They were very happy when we put them together; so were we.


It was so easy -- we love our Joshy!

Baptism -- October 26th

So, Josh wasn't able to attend his baptismal ceremony. He had an emergency baptism on August 9th, and he wasn't discharged from the NICU in time for this one. So, Joey had to bare all without the support of another naked baby. Too bad! Father Tri (Tree) did a great job -- he also made sure to include Joshua and his godparents.

Check out the pictures from Photobucket (click on the slideshow link)
Here's some pictures from this Halloween via Photobucket.

Frist Post

Okay, so I'm finally diving into the whole "blogging" thing. Only 5 years late. Gonna try out the features and see how the photobucket interface works for me.