Monday, August 13, 2007

Short Story:
No news is good news.

Long Story:
I didn't want to update for two weeks because I have a tendency to jinx myself when things are going well for Frankie. Since being home from Duke, he's been terrific (still have to knock on wood, though).

He took a turn recently and has been eating non-stop. His favorite food right now is cheese. It's high in fat, so we have to be careful with his diet (still on pancreatitis alert), but it's difficult to persuade him with anything else. So, we've opted for some low- or non-fat substitutes. Thankfully, he's not incredibly picky (like his mom).

In addition to Frankie eating better, he's been looking and acting great, too. We have attempted to go to an every two week schedule for clinic, and even if we have to go in before Thursday this week, it's still longer than we've gone in months!

Officially, he's on a wean of his Tacrolimus medication (immunosuppressant) and we've changed his steroid successfully, so far, back to Cortef. Cortef replaces his cortizol, without the effect of weight gain. So, he's lost quite a bit of weight over the past few weeks. He really does look great, like a "normal" four year old.

He's still on a high dose of blood pressure meds, but we're hoping with the wean of Tacrolimus and the changeover to Cortef (from Prednisone), his BPs will remain low so we can start that wean, too.

Hmmm.... what else? Well, Frank's away on business, so It's me and Frankie alone for the first time since transplant. It's a strange feeling knowing that Frank won't be home at the end of the day. But, we'll manage. There's plenty of families out there who had to be separated for more than just a week through transplant, so I think I can tough it out!

Oh, and a funny story... last week (I think, my days blur together), I received a call from Frankie's nurse practitioner. When I answered the phone, she started laughing. Which, made me more confused, as I was't expecting a call from her. Apparently, she meant to call her own home to catch her husband before he left for work. And, instead, she called me! No wonder she was laughing! We both got a chuckle out of it.

And, now for a CHC 2nd floor story... For those of you who have followed my drama with this particular floor at Duke's Children's, you will appreciate this one. I have said for a while now that I'm on the "do not mess with" list for this floor. So many things have gone wrong, and I became pretty vocal with the staff... so much so that I believe I was flagged in their system somehow.

I recently got my haircut, very very short. So, when we got to Duke, it took a few seconds for the nurses in the clinic (4th floor) to recognize me. One of the evaluation days we had to be on the 2nd floor, so, I went ahead of Frank & Frankie to check-in. One mother was being waited on, and there was another mother in front of me.

There I was, quietly waiting for my turn in line, when the receptionist (waiting on the first mother), stood up and said (no joke), "Mrs. DeMatteis, we'll be right with you." Both mothers turned around to see who the receptionist was talking to... as if to say, "who the heck are you, and how do you rate?" On top of that, the two receptionists both chimed in on how they loved my haircut, and how they almost didn't recognize me. I was speechless. Frank was hysterical.

Sunday, August 26, 2007

Short Story:
(Knocking on wood...) And, still, no news is good news.

Long Story:
So many "little" things have happened in the course of a month that I neglect to write them in this journal because it's usually late at night and my brain isn't completely charged. But, it's not for a lack of trying to remember... I just have a really bad memory.

So, I'm going to touch on a few items now....

I cannot even tell you the date, but I know it was in August... one of Frankie's nurses from Duke (and now a wonderful friend) is doing some traveling nursing on Long Island. Chris came to visit us for a night and it was great to see her. Thankfully, Frankie was in great spirits and health for her visit.

When we were at Duke for Frankie's evaluation, Frank and I were able to enjoy an evening with another one of our nurses-turned-friend and her husband. It was funny, because at first we were going to cook this nice meal, but at the end of a long day, we all decided that pizza and beer was a much better choice! Thanks to Jenn and Brad for such an enjoyable evening!

Now, if they aren't home already, Cari, Matt, Jessie and Dylan are on their way home from Duke for Jessie's 2 year post-transplant evaluations. Jessie was transplanted one week before Frankie (with the same disorder/disease). I called Cari on Monday morning to wish them all luck with the week. I hope all is well for them and that they were all able to survive the week!

I have also met more families (beyond what's on Frankie's "friend" page) over the past few months. There was one four year old boy we met in NC who just got diagnosed with MPS, another boy who we found out about through an email and then there are some local kids we've met from being on 7-West, namely Kacey and Victoria who are always in need of some positive thoughts and prayers.

Thank you to everyone who continue to follow Frankie's progress and the progress of our friends. You have no idea how much it means to all of the families.

Thank you.