Solidarity!

Grumpy Going Bald!

The finished hair do!

Cousin Derek going bald!

Looking good gentleman! Donavynn was very happy to see these pictures and know he won't be the only one who is bald. He is feeling alot better today. Still getting fevers, which sucks! But he has been eating a little and drinking, talking, and playing. I even got him up into the shower today. He wasn't so thrilled after the shower when they had to take the plastic off that was protecting his port dressing. But it was good to get him in there and clean him off. He lost a lot of hair in there. He has so much that you can only see in patches. But even though it is getting everywhere he still won't let me shave it. In all of this I am trying to give him as much power as possible. He doesn't have a say in most stuff but he does in that. So we'll just deal with the mess as it falls out on its own.

He says "My hair is falling out, and I'll be bald like Grumpy, but my hair will grow back." He also said "My hair has to grow back red, Nana said so!" Thanks mom, you brainwashed my boy! lol

That is about all for now. No new updates, they are going to try to get that biopsy report because they still haven't heard anything on that. I'll update when I hear more.

Donavynn's Shadow Buddy

This is Donavynn and his shadow buddy. Look he even has his own mask! He also has a port, actually it looks more like a hickman but he is Donavynn's new treatment/hospital buddy. He named him "Two" lol This was his "I'm tired" smile. He is resting now, I just thought I would share his new buddy with everyone. If any of our fellow warrior families wants one you can contact Shadow Buddies
401 Clairborne Road Suite 103
Olathe, Kansas 66062
or by phone:
1-888-Buddie1

And they aren't just for cancer patients, they have ones for transplants, dialysis, burns and more. I thought this was so great because when I put his mask on him Donavynn said "He's got a mask just like me!" And it really seemed to make him happy to have a doll who looks like him, his hair is even falling out too!

An Uneventful Day

Today has been pretty quiet and mostly uneventful. He is still spiking temps, but he got his blood today and has some good color now. He has also been eating a little bit. He had a few bites of brownie, some potato chips and a crabby patty gummy candy. It isn't much but for him it is huge. He has been playing his DS all day. And still talking to us! I don't have any more results yet. We are still waiting on the biopsy, which I thought would have been done by now... but it is the weekend so who knows. I am going to ask the nurse to check again when she comes back. His stools seem to have slowed, he isn't oozing anymore and they aren't as watery, so hopefully that will continue to get better. He also hasn't had an upset stomach since yesterday morning I believe.
Dave let me get a break today! I got to leave the hospital for a little while, which was nice. I worried the entire time, but thankfully he has been doing much better so I felt a little bit better about leaving for awhile. And they did fine.

He is currently snacking on his potato chips now, maybe he'll even finish them off!

On another note, now that things seem to have settled a little I feel that I need to share news on our other special little one. She had her state testing done awhile ago, and we got the results to them. She is still behind in most everything, measuring between 2nd and 3rd grade, but on the listening test she scored 9th grade, 7th month! We are so proud. Her teacher thinks it is pretty likely that she simply got bored with the other tests, but we are still going to continue to work with her and help her out, because her grades have been steadily improving. We know she can do it, but we also know that she has a lot on her plate right now as well. She has been so brave and so strong as well, and we are so proud of her too!

I guess that is all for updates right now. I'll post again later if we get any news.

Good Morning

And so far it is. Donavynn had a few stools through the night, but not as many as he has been having. Most of it was just oozing small amounts. Unfortunately they are just as painful to clean, and just as important because we need to keep that area super clean. But he did great, and he had daddy up till around 2 am and they were playing his DS and talking! The talking has not stopped yet, even though the sedation has long worn off, so we are hoping this lasts. He seems to be feeling so much better, wanting to do things he hasn't in weeks. Part of me is wondering, and I'll have to ask the doctors if perhaps his port catheter location was causing some of his symptoms and making him feel worse... perhaps that was why he wasn't talking? Who knows. He'll be getting blood this morning, his hemoglobin was 7.9 I think, so hopefully that will make him feel even better. Also we learned that so far the only thing his wound culture has grown is normal skin flora. They could have caused the wound infection as well, but because they are normal for the skin we won't ever really know if they were invasive and causing the infection, if it was an infection at all. We'll probably just assume that that was it if nothing else grows. And he is covered antibiotic wise, so that is good. As far as I know his blood cultures are still negative, which has me a little boggled because his fevers have been pretty high. He has had this happen before just because of low counts, so who knows if that is it. So we are using Gentamycin cream (antibiotic) on his sutures as well as aquaphor as a barrier over it. We are also using ketoconazole for the yeast on the red areas. Hopefully that will help. They also just gave him so oxycodone to help with the pain, because his bottom is pretty sore. So hopefully that will help. Those are the updates for now, I'll post again after we see the doctors, or I get more information. Please keep sending up the prayers. Specific requests are in previous blogs. Thank you so much! And an additional prayer request: that Donavynn keeps talking!!!

Updates

Ok so they did the procedure and got the port working agian! YEAH! I felt better about them doing it once they explained that it wasn't going into an artery it was going into a vein, a big vein but that is still better than an artery because they gush, veins don't. While he was down there, when they finished that dermatology came in and punch biopsied, and cultured the wound on his bottom. The good thing was that with the punch biopsy, it took the entire sore and then they stitched it up. So hopefully that will help it heal faster. We have to be very diligent in cleaning and keeping the antibiotic ointment on them to prevent that area from getting infected. He did great throughout the whole thing, thankfully, I was freaking out a bit. And the cool thing was that the sedation made him loopy, so he is TALKING to us again! He said, slurring his speech like he was drunk "And I love you too, and I have a bandaid, daddy where did you get that sticker, mommy, where is your sticker?" lol Just like that, one after another! I was crying tears of joy to hear his voice, and hear him saying things that didn't involve the words "Ow" or "tired" or any of the other one word answers we were getting if we were lucky enough to get an answer at all. And for the moment he is still talking so, my guess is that the sedation hasn't worn off yet. We will hopefully have some answers tomorrow, but who knows because it is a Saturday.

We did get the C-diff test back, negative! They will probably have to do two more just to be certain but at least the first one was negative. He is still oozing stool though, so hopefully that will clear up soon, that will surely help his bottom heal.

Also the infectious disease doctors were in, and they as well as dermatology feel that it is more likely that this is pseudomonis, instead of aspergillus, but either is possible, or it could be something else entirely. Hopefully we'll know soon. Either way he is on meds that will cover him all the way around, antibiotics, and an antifungal. Ok I think that is everything. I'm going to go now and enjoy my boy while he is chatty. Please keep praying, with the way the day has turned around, my guess is heaven's doors were stormed with prayers this afternoon, thank you! Please keep sending them up! We aren't out of the woods yet.

Going Ahead with the Procedure

Ok, I guess they are going to do the procedure today at 2, it is similar to an angio. So I'm officially freaking out. Dr. Shore looked at his bottom and is concerned about aspergillus. I think they are going to start to treat for that just in case. He said if it is that, and it is just a skin infection than that is good. If it is deeper than that than we have a problem. We need prayers right now, please. I'll update again when I know more.

Dye Study Results

Above: Getting ready for dye study
Vascular access team

The vascular team came and was able to get an IV in, and get blood for labs, so that was good. We also just got back from interventional radiology and the doctor spoke to me down there. I love that, I was able to stay in the room and he explained everything to me as he did it. The first problem was that it wasn't accessed, the huber needle that they put in last night apparently wasn't long enough so they had to take that out and put in a new one. Then he showed me the catheter, it is supposed to be straight, but the end of his is curled, so it is in a bad spot. The problem with that is that in order to give chemo through it safely they need to be able to get blood return, that is the easiest way that they can be sure that it is in right. So they are going to have to fix it. The options are a whole new port, or they go in from underneath and try to straighten the catheter. That is what the radiologist wants to do. He is going to talk to Dr. Shore and we'll go from there. They may have time to do it this afternoon, but I don't know if Dr. Shore is going to want to do that or not because his counts are so low and he has been running a fever. At this point everything is really up in the air. He is resting now. I'll update again later.

Specific Prayer Requests:
Are the same as last night with a few additions...

1. Please pray that they are able to make the best decision about what to do about his port.
2. Please pray that if they decide to operate all goes smoothly with NO complications.
3. And please pray that they find out what is going on soon and fix it!!!