Sunday, April 1, 2007

This will be a quick one... Frankie's port surgery is tentatively scheduled for Tuesday, April 10.

He will also have his umbilical hernia fixed as well. I'm not sure if that will turn his outie into an innie, but I can't imagine with his steroid belly that it will matter much. If it does, and I can't believe I'm saying this, but I will miss the outie.

I have to go now as Frankie doesn't really like it when I'm in front of my laptop and not paying attention to him. But, as soon as I'm away from it, he ignores me... child's prerogative, I guess.

Take care!

OH! I forgot!! A few dates to remember:
Saturday, May 5 - Rainbow of Heroes Walk, Durham, NC
Saturday, May 12, 6:30pm - Fundraiser for Frankie, Hamden, CT - more info to follow
Tuesday, May 15 - National MPS Day

Sunday, April 8, 2007

Happy Easter! Things have been calm in the DeMatteis house... thankfully. We're just trying to make it to the surgery date (still Tuesday) without any major issues.

On Thursday, Frankie and I went to clinic for blood draws. His FK level is 17 (amazing) but his ANC dropped to 858. Per his Duke Transplant doctor, they want his ANC to be above 1000. We didn't find out his level out until later on Thursday, so we couldn't drive back to clinic for the GCSF shot. Instead, I had to do it at home.

I hate giving him the shot. Not only because it will hurt him, but I get nervous that I'm going to screw it up. And, really, you can't screw it up, but you can make the experience worse for the child by taking too long or not administering the drug quickly. As always, he was a trooper.

We're spending a quiet day home, just us three, for Easter. My family is out of the state this weekend, and my father is in the Philippines right now. Frank's family is local, but we're keeping our distance from all little ones until surgery... just in case. Thankfully, everyone understands.

So, the boys are napping right now. Frankie woke up bright and early (5:30am) and it was Frank's morning to get up with him. So, they're taking a well needed mid-morning rest. It's nice and quiet in the house, I'm on my first cup of coffee, and things are just peaceful right now.

Since we did a lot of running around and were just plain busy over the past two days, Frank and I are planning on doing "fun" stuff with Frankie today. It's going to be a bit cold today, so we have to bundle him up if we go outside. I wish it were warmer, but that wouldn't be New England at Easter!

May this update find you all happy and healthy! Hugs across the miles!

A few dates to remember, with appropriate links:
Saturday, May 5 - Rainbow of Heroes Walk, Durham, NC
Saturday, May 12, 6:30pm - Fundraiser for Frankie, Hamden, CT
Tuesday, May 15 - National MPS Day

Thursday, April 12, 2007

While I'm positive there are people and children worse off than we are, I can't help but feel that Frankie just can't catch a break lately.

The night before his surgery (Monday, April 9), just before bath time, I noticed that something wasn't quite right with Frankie's private parts. His left testicle was swollen and red. All I could think was, "great... this will most likely mess up his surgery tomorrow."

But, fortunately, his surgeon didn't seem unnerved by the swelling. It appears that his hydrocele (which was repaired when he was 3 months old) "unrepaired" itself. Despite this new issue, surgery for the umbilical hernia and the port placement moved forward.

His recovery was a different story. Out of anesthesia, he wasn't really holding good sat (oxygen saturation) levels. So, we had to keep an oxygen blow-by on his face for a while. Once that was steady, we went to the clinic (one floor down) to have his monthly infusions. The surgeon had kept his port accessed, so that was convenient.

We got home around 5pm that night, and Frankie wasn't really back to his normal peppy self. And, he wasn't really interested in eating, drinking, moving... anything. So, after giving him his meds around 6pm (which he threw up and we redosed a few), he was off to bed.

All day Wednesday, he was the absolute, pure definition of MISERABLE. He was so incredibly sore, his hydrocele was worse, he wasn't keeping anything down, not even the Pedialyte. After calling his NP, we picked up prescriptions for Zofran (anti-nausea) and Codeine (pain, and not covered by insurance, FYI). Those seemed to do the trick if you were smart and waited for them to take effect before doing something stupid, like giving him meds--lesson learned (the hard way).

At clinic today, he received fluids--go figure. They couldn't even draw an FK level since he hadn't been on a normal schedule of taking meds since Monday night. So, we have to go back on Monday to get that checked. Fortunately, Frank was with me, so when we got home around 11:00am, Frankie went right for a nap and I got the luxury of having his sister re-color my hair at her salon.

When Frankie awoke from his nap, it was such a nice change of personality. He was feeling much better, much more like himself. He started drinking, eating (although not too much), and actually moving around, without the benefit of the Codeine. He still won't bend at the waist, which, can you blame him??? But, he was walking around today without moaning, so that's a good sign.

This week has been yucky... both the weather and with everything that Frankie has gone through. Thank God for his short-term memory!

Oh, and in case you're wondering, he has an innie belly button now, and yes, I have to say, I do miss the outie. I never thought I'd ever admit that one!

Monday, April 23, 2007 - ammendment 3pm

One of my sisters, mentioned to me that I don't have a link anywhere on the new-and-improved site to donate to Frankie's COTA fund. So, I will put a link below.

Thanks, Sonia! :)

Monday, April 23, 2007

Well, first let me say a belated HAPPY BIRTHDAY, to my husband! At least, it's belated on-line. Frank's birthday was yesterday.

We were fortunate to have his parents watch Frankie on Saturday night so we could go out to eat. I cannot remember the last time we had dinner out, all dressed up, and without Frankie (not that we really frequent restaurants lately with him, but I think you get my meaning). Our dinner was delicious, from appetizer to dessert! It was even better to be able to use one of our anniversary gift certificates!

But, life is not without drama, of course. When we got home, things were fine, but throughout the evening, Frankie's temperature continued to increase. We packed our bags and waited. Thankfully, his temp peaked at 99.5F. It's not a temp by hospital standards, but it's warm for him. It didn't help that Saturday morning after his meds he vomited, so that was still in the back of my mind.

On Sunday morning, we were still sort of on edge. But, I continued my plan of making Frank a cheesecake for his birthday. It was a simple recipe, but the total prep time was 5 hours, so I had to start early for people to enjoy by 2pm. And, since it was such a beautiful day yesterday, we ate outside. Which, was good, since Frankie vomited again. Who knows why he's doing this, but needless to say, he can clear everyone out pretty quick.

He was neutropenic on Friday (ANC 210!!!), and I had to give him a GCSF shot, but I'm not sure if this is all coincidental, or if it's related.

And yet, he appears perfectly fine in every other way. His port is fine and we've decided to do blood draws from his arm and only use the port when he needs meds or fluids. This will cut down on the odds of infection.

His umbilical hernia has healed, but he still sensitive. The hydrocele went away, so we're not going to worry about that until next time.

He's doing well with his services: PT, OT, ST and special ed. But, I really think he'd be fabulous in a school setting. But, until his immune system completely recovers and he can get immunized, we stay at home.

I think that's it... my brain is mush and I'm not feeling 100% today. I'm trying to limit my coffee, so I haven't had a cup yet today and its 2pm! First day withdrawal symptoms???