Wednesday, January 3, 2007

We're still here at Yale. And, Frankie's scheduled for a sigmoidoscopy in about 30 minutes. They are doing this procedure because viral cultures were not drawn during the colonoscopy/endoscopy last Friday and they want to figure out what exactly is going on with the ulcers they found.

Yale's pathology department has ruled out GvHD of the gut. However, based on an email from Frankie's transplant doctor, GvHD of the gut is difficult for pathology to diagnose and that they, Duke, usually have to send their samples to an outside source for confirmation. So, that's still a possibility.

We're scheduled to go to Duke next week for Frankie's 18 month evaluations. And, based on this new information, we've been told to keep the leave date open... go figure. Dr. Szabolcs has eluded to a possible three week stay. So, we'll see. I've learned that things change every second, so I just take each moment as it comes.

I hope everyone had a good New Year's Eve celebration! I wish you all a safe and healthy new year!

Sunday, January 7, 2007

We're still here at Yale. Without going into a long story, we were discharged on Friday at 4pm with the explicit intent on traveling to Duke over the weekend. That evening, at home, Frankie spiked a fever and we were back in the hospital ER at 11pm, and admitted to the floor at 4am.

Things are not looking so great. He has vomitted all day today, and couldn't even keep his nighttime meds down. They aren't sure what's causing this latest issue, if it's related to everything else, or if it's something separate.

All of his counts are low, too. So, he's at greater risk of complications.

I will update more when I have more information. Until then, I hope everyone is well.

Thursday, January 11, 2007

Greetings from Yale, 7th floor. Our trip to Duke has been postponed, obviously. We're hoping to get there soon, but we're just trying to get Frankie on the upward path. He's almost there, but there's no need to rush anything.

He tested positive for C-Diff yesterday. That and the Ceftaz resistant strain of Ecoli from his colonoscopy biopsies have put us and kept us on Isolation Contact. At Yale, the gowns are a nice shade of blue. And, they don't do reverse isolation, so you have to wear your gowns and gloves in the room if you plan on using the common areas, which we do to get water or juice.

His FK level has gone from a high of 26 yesterday to a low of 8 this morning... all from just skipping one dose. Amazing. His counts are all on the rise with ANC at 4400, WBC over 12 and RBC at 8.6. We're very eager to getting and keeping our little guy on the healthy road toward a 100% immune system. I'm very curious what it is at this point, after the past few months, I'm sure we've been set back again.

Our doctor here at Yale, Dr. Beardsley, has been in constant contact with Dr. Szabolcs at Duke, which is very reassuring. Both are committed to getting rid of the mystery ulcers in his system (no one wants to outwardly admit that it's GVH of the gut, but we all know it is) and getting his FK to a constant theraputic level so we might be able to wean him off of it at somepoint this decade!

Thanks to all of our friends and family that have sent Frankie messages of prayer and support!!! We cannot thank you all for your blessings. There were times we were afraid to ask the hard questions, but thankfully, the doctors knew where we were headed with our inquiries, and rest assured, Frankie's much better now.

Wednesday, January 17, 2007

We're out! Okay, it's quite a relief getting discharged, but there's always that feeling in the back of your head that you may just end up in the ER in four hours with another fever.... So, I waited to update to make sure. We were discharged on Monday afternoon.

Frankie's so much better, and it's an incredible relief. He's so happy to be in his own home, his own environment, but aren't we all??!?

Duke wants to see us immediately, so we're getting on our way. The house looks like a crime scene, though, so I have a few things to get in order before we load up the car. Thankfully, I had already packed two weekends ago (in hopes of our travel then), and just never unpacked.

Thanks again to the wonderful people in our support circle! Please continue to say prayers or send good thoughts to those children who are still healing, recovering, who are pre-transplant and post. It's a frightening experience for everyone, and it means so much to them and their families to know there are people out there who care.

Thursday, January 25, 2007

HAPPY ANNIVERSARY, FRANK! I love you so very much!!!

We arrived in Durham on Friday morning, after driving through some snowy weather in DC. Our first appointment wasn't until Monday, but we wanted to get down here as soon as possible, so we actually left right after clinic on Thursday.

Monday's visit went well. We were there a very long time (7 hours) for a blood draw and quick visit with Dr. Szabolcs and Gil. It actually didn't seem like 7 hours, so I didn't mind too much. Plus, I had come prepared for Frankie -- videos, water and crackers with hummus.

His levels were good and Dr. Szabolcs was very pleased with Frankie. He said he really didn't know what to expect, so he was very happy to see that Frankie was back to his normal peppy personality! It didn't hurt that Frankie was watching America's Funniest Home Videos and cracking up during the visit.

Frankie's skin was a bit pink and he has been scratching, so the good doctor recommended Benadryl twice a day. It doesn't really have a drowsy affect on Frankie, but it doesn't hurt at bedtime, either. Based on his levels, there was a slight indication that he may be iron deficient, so they planned on a special draw at clinic on Wednesday.

We had Tuesday off, so we did a bit of shopping and just relaxed around the apartment. It was nice not to have to run around this time. The 18-month post transplant evals aren't crazy, so we don't have a lot of appointments, but Dr. Szabolcs wants to wean Frankie off of his high dose of steroids, and wants to watch his skin react to the wean. That's why he wants us here longer than normal.

Wednesday's clinic went quicker -- 4 hours. And, I was able to meet Bryce (MPS III A) and his mom, Koren. I also ran into Shannon, Cooper's mom. I have Cooper's site to the right, and will be adding Bryce's next time. There's another Sanfilippo child I need to add too, but I can't find her link.

Friday, Frankie is scheduled to have a CT Scan of his brain. The CT Scan will show (or not show) atrophy and/or fluid on the brain. After that, we have a 1:15 appointment with Dr. Hulka (ENT) to check Frankie's tubes and determine if they need to be shifted back into position, or possibly new tubes placed. Thankfully, the CT Scan is first thing in the morning. I hate keeping him NPO for too long before sedation.

Not only is it our anniversary, but it's also Frank's mom's birthday and her brother, Joe's, birthday as well. Happy Birthday to both of you!!