The Latest Scoop
Sunday, July 10: Day +10
Woops! Did I say I was going to update the pictures on Saturday??? Okay, things slipped away from me. I apologize. Frankie is still having problems maintaining a normal blood pressure. Per one of the doctors today, he (Frankie) as been one of the most difficult patients he's had, with regard to his blood pressure). I can't tell you how many times they have added and changed this medication.
Also, his bilirubin was elevated yesterday, which could have indicated VOD (a liver disease).
This morning, the bilirubin was still elevated, above the normal pediatric levels expected, but down from yesterday. Plus, the ultrasound the doctors ordered showed no signs of VOD, but there is some "sludge" in his gall bladder. This could be a side effect of the mucositis.
In just one day, it's amazing how much the body can change. Frankie woke up this morning "gooey". I don't have another word for it. The mucositis has really set in. His mouth is continually filled with mucous (I liken it to the gila monster) and his gums are incredibly swollen.
But, on a brighter note, Frankie's WBC count went from zero to 0.1. Which, for some of you out there doesn't sound like a huge deal, but it's pretty big on 5200.
Even though the WBC did go up, they could go back down as Frankie is also being affected by GvHD (Graft vs. Host Disease). This has given him a complete body rash that we must control with three types of creams three times a day. Two of the creams aren't so bad, but the third is a very thick ointment that makes Frankie shine like a greased pig. (nice image, huh?)
We are also forcing Frankie to walk a couple of laps a day (at the very least) out in the hallway. This helps his muscles and his lungs. I feel sorry for all of the families on the floor, as the rooms are not sound proof. But, once we get him going, he does pretty well at getting two laps in each time.
I took a couple of pictures of Frankie, Bobby, Frank and the massive pole to which all of Frankie's medication is attached. The nurses call it the Christmas Tree pole. Please note that this is the third pole we have had since we first were admitted onto the unit.
Some Things To Note
We found out who are primary and co-primary nurses are. And, I have warned one of them that pictures will be taken and posted. I may have to sneak them, though, if they do not cooperate. It's either, pose for the camera, or deal with the picture I get and post!!! Ha ha ha! Watch out, ladies!
Our Primary Nurse is Melody. She's on with me tonight. Frankie likes to blow kisses to her, but tonight, Barney won. Sorry, Melody! And, our four co-primary nurses are Chris, Jennifer, Shawn and Michelle.
We have a "Best Buddy" for Frankie. Her name is Kate. And, unfortunately for Kate, each time she shows up, Frankie is on the verge of sleeping! Kate's here to help play with Frankie and give Frank & I a break if we need it. Most of the children on the floor have a Best Buddy. They are volunteers that give parents/caregivers a break a couple times a week or can run quick errands (coffee!!!) for us as well, if needed.
I feel like I'm forgetting something...
Pictures
Daddy and Frankie (July 7th)
Bloated Frankie (July 8th - notice the change from the picture above)
Frankie before I shaved the remaining hair off his head
Frankie after I shaved the remaining hair off his head
Frankie and Bobby
Med Pole Number 2
Med Pole Number 3 (notice Jennifer adjusting all of the meds)
Frankie with Bandana (from Lex's birthday)
Friday, July 8 : Day +8
Okay everyone, I'm so sorry for not writing earlier. Things haven't been so great here at Duke. Frankie hasn't been feeling (or looking) himself, consequently, Frank & I have had to tend to him more so than just a few days ago. Forgive me if I forget to write certain details that would have proved more timely and interesting. So, where do I begin??
On Day +6, Frankie had just started to spike a fever that the doctors couldn't really explain. And, it pretty much spiraled from there. He has had a fever now for two days straight. I don't believe it's been below 101 degrees during this time frame. And, if it has, it wasn't for very long. He has been hovering between 102 and 104 degrees since Wednesday.
On Day +7, yesterday, the fever was accompanied by an onset of a rash from the mid-belly up. It wasn't making him itchy, but it appears that the mucositis has set in. And, unfortunately, for little boys, this extends down through his entire system to his urethra. This makes urinating pretty uncomfortable for him.
So, in the afternoon, they started Frankie on a morphine drip "as needed". What this means... we could press a button every 8 minutes and it would disperse .3 mg of morphine into his system. Even if we pressed it before the 8 minutes was up, the machine would not disperse any more morphine... a check, if you will, to make sure the child doesn't overdose.
At this point, Frankie started to get extremely lethargic. Even still, the doctors suggested that we get him walking (not being pushed in a wagon) to work his muscles, bones and lungs. So, Frank & I got him up and forced him to do one lap. It was excruciating for him. He didn't want to do it at all, plus, he kept trying to tear off his mask.
Day +7 (night)... One of Frankie's nurses, Chris, was with us again on the 7pm-7am shift. Frankie wasn't maintaining a good oxygen saturation level, so she rigged up the blow-by to help him out. Generally, they like children to maintain a saturation of 92 percent or above. This actually served a second purpose... to keep him cool during the night, as the oxygen is blown into his face, kind of like the breeze of a fan. I think that's why he was able to sleep comfortably.
Day +8 (am)... Frankie and I didn't wake up until 9am!! Frank and Bobby (friend from home) showed up relatively soon thereafter, Oasis Latte in hand for mommy!! When we sat Frankie up, we noticed something quite different from yesterday. He was completely swollen. His lips, his cheeks, his eyes... everything. It's amazing how quickly the body changes. We thought maybe he was so swollen in his face because he was sleeping on his belly, but when we did his daily weight, he had gained one pound from the day before. This is fluid retention, a combination of all of the drugs/medications in his system.
Frankie's behavior most of the day was pretty subdued. While I was out running errands, the speech pathologist stopped in to work with Frankie. Apparently, he worked with him for an hour, but Frankie wasn't really participating as best he could have. In addition to that, Frank and Bobby had Frankie walk another lap on the unit, which, again did not go smoothly.
So, we kept Frankie sitting in his booster chair as much as we could. Although, there were times where it looked like he could fall asleep in mid-Elmo watching, he hung in there. We were even able to get him to do one more lap before the day was done.
The rash has now completely covered his body. They have given him three prescription creams/ointments to keep it under control. Apparently, if you let the rash go, it could enter his system and really do damage to his internal organs. Great. So, ever four hours, we have to lather him with cream. But, we have to alternate what cream is used because of the steroid issues.
Plus, they've started him on a steroid drip to "control" the rash and have decided to turn the morphine "as needed" to a constant drip as well. Fun.
So, for the past 48 hours, or so, things have been pretty yucky in the land of 5200 (PBMT - Pediatric Bone Marrow Transplant Unit). And, even though they say that as we approach Day +12 things will get worse before they get better... I have a hard time imagining that, nor do I want to.
Some Things To Note
I've changed the links a bit to the right. I've added some links that I hope you will take a couple of moments to view. Some of the links are for children we see every day and for others we have met along the way. Please take the time to visit them. These families have given Frank & I such wonderful support while going through their own personal pain.
I've also added a list of some businesses in the Hamden/North Haven area that have allowed my family to place donation canisters at their establishment. And, while it seems an easy thing to do, to give a family a little space on their countertop, I understand why some businesses say "sorry, no can do" and why others open their doors wide open. I just wanted to thank those people and businesses that opened their doors to my son.
One of the businesses listed is the Connecticut Pageant. These wonderful people will be attending most of Frankie's fund raising activities up in Connecticut, depending upon their schedule and ours. Please look for them at the next event you attend!
PICTURES: I'll be posting different/updated/new pictures tomorrow (Saturday, July 9). It's already 11:42 pm on Friday night, and I need to go to bed. I've got a new idea that I'm going to try out tomorrow. :)
Love you all! Good night and check back tomorrow!!!