Monday, May 1, 2006 - Day + 305
Hi, All!

Unfortunately, due to the cost of flying or driving, for that matter, I will not be going back down to Durham for the Rainbow of Heroes Walk this weekend. But, please note that if you sent me a donation, I have sent those along to the fundraiser. I have the tax receipts, and will send those in the mail sometime this week. Now that I know the walk is every year (the first Saturday in May), I will plan better for future walks!

THANK YOU SO MUCH FOR ALL OF YOU WHO DONATED TO THIS WONDERFUL CAUSE!!!

As some of you may know, Frankie's third birthday is coming up, May 21. We were hoping for a few more privileges coming back from his 9 month post-transplant evaluations, but with his rash (the jury is still out on what it is), no one, especially us, wants to take any chances. What this means is his birthday will be celebrated without other children. It's sad, since we had EVERYONE over for his second birthday, and even had two different parties for it. But, that was life pre-transplant!

Health update on Frankie: His rash has gotten better. But, I haven't heard back from anyone (Duke or Yale) regarding the actual diagnosis. For those of you who are keeping up, Yale does not believe it's a GvH rash where Duke does. Honestly, I really don't care what it is, I just want everyone on the same page so my son can be treated properly and quickly. We'll be going to Yale for infusions on Wednesday, so I'm hoping to have some answers by then.

In the meantime, please continue to say your prayers and send good thoughts to all of the children and families who are in need of healing or comfort, transplanted or not. These disorders are not an easy thing for anyone to go through, much less a child.

Tuesday, May 9, 2006 - Day + 313
Everyone, please, I need your help. Please say your prayers for a beautiful, vivacious, spunky young lady... Ashley Bagley. Her link is to the right. Her liver is failing, she is in the hospital, and she is in desperate need of prayers and a new liver.

I received a call from TuWana, Ashley's mother, this morning. I could tell automatically from the tone in her voice that the news was not good. She cannot get to a computer to update Ashley's site, but, I certainly can update mine.

My heart dropped into my stomach when TuWana told me the news. We had just seen Ashley two weeks ago, while at Duke for Frankie's 9 month visit. She looked incredible. She looked beautiful. She was so excited about going to college in the fall. She walked the hallways at the clinic with Frankie while we waited to be called in to see the doctors.

She is truly an amazing young lady. I remember joking around with her and her mom while we were at the scrapbooking session on the unit. I immediately fell in love with her, her personality and sharp, saracastic wit! In the midst of her illness, she could still laugh and smile, and bring that out in all of the other people on the floor.

The best was when she and Greg acted out a song in the hallway on 5200. I have it on video, and I was able to put some snapshots on our pictures page. The two of them got the entire nursing staff out, dancing and laughing, which in turn drew out all of the other children from their rooms.

Please pray for her. Please pray hard. Please pray for all of the children, as this only brings to the forefront that this battle is not over when our children are discharged. How long before we can exhale, before we can truly relax and not worry?

Love to you all, hugs and prayers!!

PS... please excuse my typing and/or mispellings... I have a bad case of carpal tunnel in my right wrist that I'm battling.

Friday, May 12, 2006 - Day + 316
Good morning, everyone. I received a call from TuWana, Ashley's mom, yesterday. At the time of our call, Ashley was in surgery. She had received a liver and was already 3 1/2 hours into her surgery when TuWana and I spoke. And, as of that moment, everything was going well and Ashley was handling the surgery well. Hopefully, I'll be able to contact TuWana later today to get another update.

Frankie and I are headed down to the dentist today for another attempt at fixing his chipped tooth. He has to be sedated, and unfortunately, the earliest appointment I could get was for 11:00am. So, he can't eat or drink anything, for fear of a repeat performance!! Wish us luck! But, to add insult to injury, we're supposed to get four inches, yes, four inches of rain today!

Thanks to everyone who has sent positive thoughts, prayers and healing wishes to Ashley, and all of the other children who are in desperate need of relief. We, the moms, dads and families of these precious children are so appreciative of even the smallest gesture.

Monday, May 15, 2006 - Day + 319

For those of you who don't know, Frankie had a fever of over 104 degrees on Friday night. Therefore, a call was made to the on-call hem/onc doctor and we were immediately instructed to bring Frankie to the Pediatric Emergency Room.

At approximately 7:30pm, we arrived in the PER. We were put into a small isolation room, thankfully, while we waited for the next step. During our stint in that room, Frankie had his blood drawn for cultures of his lumen and his CBC levels. We had pretty much figured we were going to be there for a few hours, so we were prepared for that length of a visit. Even still, I didn't want to be there, and as the hours passed, we realized this was going to be a longer stay than we had anticipated.

Unfortunately, my mind escaped me, and I didn't let the doctors know on a timely basis, that Frankie really needed a stress dose of steroids. This probably would have made him more comfortable sooner. Hindsight is 20/20. After all of the nurses and doctors had either seen him, reviewed his levels, spoken to his clinic doctor, we were approaching the midnight hour.

While still in the PER, he was given a dose of Ceftaz (antibiotic push), where he proceeded to vomit as it was being pushed into his line. Apparently that is a normal reaction, but if he had his stress dose of steroid, it probably wouldn't have. They immediately gave him an anti-nausea drug to help his belly.

Around that same time, they told us that he was definitely going to be admitted. The doctors didn't want to wait for the culture results to come back, send us home, only to have us come back again. Now, we were just waiting on a room. It was probably around 1:30 or 2:00am before we were admitted to the seventh floor.

Frankie was immediately given another antibiotic (Vancomycin) and put on fluids. That night was rough, but we got through it. Unfortunately, when Frank drove home that early morning (driving in New Haven at 2:30am), with all of the rain, he didn't see the monstrous pot hole. I got a call around 2:30am from him letting me know he just got a flat tire. Will the drama never cease??

It wasn't until 8am on Saturday morning when Frankie finally received his stress dose of steroids. By that time, he was also put on an anti-viral medication for a possible stomach virus.

So, on top of having the infection in his lumen, he tested positive for C-Diff. The infection in his lumen will be treated by us at home with infusions every 8 hours. C-Diff only requires an oral medication.

We were discharged today, but will have a nurse visiting us to show us how to administer the infusions. Which, for those Duke parents that have been discharged... this new apparatus looks so much easier than a Bard pump or the other electronic pump (name escapes me right now). It's pretty cool... a container (size of a sippy cup) holds a balloon filled with the med and somehow disperses the medication without a pump. The balloon deflates over an hour, and then you're done. You don't even have to hold it any sort of way, as it's not dependent on gravity.

I'd like to extend a quick "thanks" to all of you who have prayed and sent positive thoughts to Frankie. He's doing well right now, actually he's napping, thankfully. But, we're hoping the steroids flow out of his blood soon, as his super hyper-activity in the hospital was about to drive us crazy.

Sunday, May 21, 2006 - Day + 325

HAPPY BIRTHDAY, FRANKIE!!!

Okay, so today should be a fun, happy day for all of us. Today is Frankie's third birthday. However, yesterday, when Frankie woke from his nap, he felt very warm to me. When I checked his temperature, it was 103 degrees. I decided I'd wait a few moments... maybe he's just warm from a deep sleep. Thirty minutes later, his temperature was still reading above 102 degrees. Time to call the doctor.

But, with it being Saturday when we made the call, we got the on-call doctor. Fortunately, it was the same woman from last weekend, so she was already familiar with Frankie. I was already packing an over-night bag while speaking with her. We were at the Pediatric Emergency Room within the hour.

This time, we had to draw blood for a culture, but not using his central line. The last time that happened, we were at Duke and the lab tech was trying to draw blood for over 27 vials. That day was pretty sucky, so when they told us about the peripheral blood culture, Frank and I were both a little worried that the would have trouble finding a good vein.

Strangely enough, not only did Frankie sit still for the first attempt, he was actually laughing at the TV (Elmo's World). I think I was more sick to my stomach than he was. They couldn't find a vein in his arms or hands, so they went to the feet. Luckily, they didn't need a lot of blood, because even though they got a vein in the foot, the blood wasn't flowing very well.

After a few hours in the PED, we were admitted to the hospital. The unit we were in last week was full, so now we're in this other area that's not used to recovering transplant kids. Frank and I have to repeatedly shut the door as the nurses leave it open, even though they've been told. The room doesn't have reverse pressure air and it was filthy when we first got to it, so I'm sure the other parents that read this will completely understand Frank's and my concern.

They called housekeeping for us so the floor could be mopped. Then, Frank and I wiped down the rest of the room with the anticeptic wipes his mother brought to us. Needless to say, it's been a bit frustrating... and for my little boy's birthday, it pretty much sucks.

So, they're not sure why he's got this fever. But, hopefully the cultures will show that it's a different infection. If it's the same thing, and the Vancomycin isn't working, then they will have to pull his central line. And, the talk is NOT to replace it. I'm not sure I like that idea, but if it means no more infections, and no more weekend visits to the hospital, I'm all up for it. I'll deal with future infusions later.

So, right now, it's around 6:30am, and I'm trying to update this site so you'll all be informed more timely. Plus, I had to wish my little baby a Happy Birthday, despite where we are.

How I Spent My Third Birthday...