Sunday, February 11, 2007

MAJOR COMPUTER ISSUES... WILL BE BACK ONLINE SOON

Hi, everyone! My computer went "ugh" the other day and I'm trying to rebuild it. I have to relocate all of my programs and reinstall. I'm editing this directly on the internet without the use of my web editor, so it's a bit tricky typing between code. Fun times.

A quick update on Frankie. We're back in Connecticut, and have already been to clinic twice. On our first "normal" clinic visit on Thursday, Frankie's levels showed that he was Neutropenic with an FK level of 26! Can we ever win???

Friday, I had to bring him in again to get a shot of GCSF to boost his neutrophil count. They decided on a subcutaneous injection versus the IV because the shot's effects last longer.

Fun bit of info... The nurses taught me how to give Frankie the shot so I could also give him another one on Saturday (clinic not opened on weekends). Thankfully, if I felt like I couldn't do something like this, my dad is a retired doctor and my sister-in-law is a nurse. Very convenient. But, (patting myself on the back now), I was able to do the shot on Friday in the clinic and at home with Frank's help.

We'll be back at clinic again on Monday to recheck his ANC and his FK level. We're hoping that we can finally get back to our "normal" life.

Oooh, forgot to mention the final results from Frankie's Duke visit... he fell back regarding his immune system recovery. We weren't really shocked by that information. So, instead of being closer to 100% recovered, he's back down to roughly 50%. It's a little upsetting and we're back to very restrictive behavior, but we'll do anything to get his health back to where it should be. I guess that goes without saying.

His CT scan and hearing tests all came back great. There was no atrophy of the brain and no fluid either. And, as we expected, his hearing is adequate for communication. Again... he's just ignoring us.

The developmental evaluation went as it always does... only this time, Frank & I didn't stress about it at all. Frankie did better in some tests and worse in others... basically giving him the same score he had at the last full eval in April 2006. For example, while he's lost words, he's gained sounds.

Hopefully, I'll be back up and running soon.

Monday, February 12, 2007

After a brief visit to clinic today for a recheck of Frankie's FK and ANC levels, we were off on a few errands.

At 2:00pm, Frankie had Physical Therapy. It had been a while since Frankie has had services, so it may take some time before he warms up to the whole thing.

At 4:00pm, Frankie's Special Ed teacher came for "play time." I think he did better during this session since it's more fun than work. She's coming back tomorrow to build a big train set with him, so he should enjoy that.

Later this evening we received the results from the lab draws. Frankie's FK level dropped to 14 (formerly 22) and his ANC rose to 1000. I won't have to give him any more GCSF shots until they review his ANC again on Thursday. Looks like we're back to the bi-weekly clinic visits...

Tuesday, February 20, 2007

I have a little updating to do. I wrote an update on February 12, but due to computer issues, I couldn't post it, so I posted it below today's entry.

Frankie is doing well. He's eating A LOT because of the steroids, but otherwise doing fine. We're scheduled to go to clinic on Thursday, and if things go well, we'll have actually only gone to clinic once this week! But, I never hold my breath, so I'll just say that yesterday and today were clinic free!

A couple of things to note -- National MPS Day is Sunday, February 25th. The Rainbow of Heroes Walk is the first weekend in May, and I'm going to try and raise some more funds to help support a great program. I'm also hoping to go to the walk, but we'll see how things are when it gets closer (first Saturday in May).

And, finally, a very important note... the website will be changing on my next update. The layout and colors have all changed. I'm just running some final tests on the links to make sure everything is working.

Thanks!

Wednesday, February 21, 2007

Hi everyone!

Well, here it is... the new website. It's still a work-in-progress, but it's closer to what I had originally envisioned almost two years ago!

Frankie and I will be headed to clinic tomorrow for our weekly visit. I'm hoping for a good FK level and a good ANC level. He vomited today for no apparent reason, so I hope that wasn't an indication of a drop in his ANC or FK absorption.

This was a short update as I'm still in the process of checking the new website and its links. Please make sure to visit the new Guestbook page! I hope it works.

Take care!
Cynthia

Friday, February 23, 2007

First, Happy Anniversary to my parents! Unfortunately, they're not together (does this run in my family or what???) My mom is in England and my dad is home in CT. Frank and I are having him and Frank's parents over for dinner tonight.

Second, Frankie's counts, chemistries and hematology results from yesterday's clinic visit were great. He has an ANC of over 1200 and an FK level of 16 (high, but better than too low). We're still waiting for the C-Diff results, but those take anywhere from 24 to 48 hours, so I imagine I'll hear about that on Monday.

So, despite the random vomiting episode Wednesday, Frankie's been doing great. He's having PT right now, so I have a moment to update the site.

Third, as a point of interest... I picked purple for the main color for the new site because that's the color that represents MPS disorders. National MPS day is this Sunday, February 25.

To answer Alison... I can't even count that high (cups of coffee to redo the site). Thanks to everyone who's visited and approved of the new look.

Again, thanks for visiting!

Sunday, February 25, 2007

Okay... I was completely off. Today is NOT National MPS Day. Thanks to Cari for letting me know. National MPS Day is actually May 15, 2007. Sorry for the confusion.

Other than that, we've just been hanging out this weekend. Thankfully, nothing to note. We like those days. :)

Hope all is well!

Monday, February 26, 2007

At roughly 2am this morning, Frankie started gagging and retching. Frank and I checked on him and noticed that he had spit up a little, but nothing major. So we settled him down and went back to bed.

Not even 10 minutes later, he was retching. again. When we checked on him the second time, he had the same spit amount on his pillow, nothing major, but he had a, what can only be described as, HORRIBLE diaper. I can't even express to you how awful smelling this was.

After that, he seemed better. But, if he wretched again, Frank suggested we bring him into our bed so we can avoid going up and down the stairs all night. By 3am, he was in our bed, retching for the next three hours and having severe diarrhea (towels had to be laid down, if that's any indication).

He didn't have any fever, and when I gave him his morning meds, he vomited them up pretty quickly. So, if the entire morning didn't already dictate that we bring him to clinic, the vomiting sure cinched it.

After blood draws, stool samples and cultures taken, we decided with his doctor, that it would be best to have him admitted now, instead of going home, him spiking a fever at, let's say, 5pm, and having to go through the ER to get him admitted at 10pm (speaking from past experience, I'm not exaggerating)!

So, we're here... 7 West.... our home away from home, it would seem. Frank had to leave for his class, so it's just me and Frankie hanging out until tomorrow night when Frank comes back. I'm going to estimate that we'll be here at least two nights. I'll update when I have more information.

Wednesday, February 28, 2007

The update on Frankie is this... we went in for massive diarhhea, but ended up with: a) C-Diff; b) Line Infection; and c) High Blood Pressure.

They (meaning the doctors) are not sure if the line infection was due to contaminent -- surface bacteria entering the site while being accessed, or if there is actually bacteria colonizing inside his port. And, at this point, they won't know for certain, so they have to treat it as if it is the latter.

C-Diff I could have predicted. So, we're on contact isolation and the latest drama with us is trying to find the right medication that will work and that Frankie will actually take instead of spit up all over himself and in my eye.

High blood pressure was also not a surprise. He's been having issues with that for over a month, so there's talk of adding a second oral medication to treat that.

I assume we'll be inpatient at Yale for at least another seven days. We were admitted on Monday, started IV Vancomycin for the line infection on Tuesday, but changed to Oxicilian today. So, I'm not sure if the seven-day course of antibiotics kicks in with the change or if the two days of Vanco counts toward that. We'll see what the doctors say tomorrow.

Thanks to everyone who has been sending me notes and leaving messages for Frankie! It really lifts our spirits. I wish I had added that guestbook two years ago!

Hugs to you all!