Quick Update - Still Waiting

Howdy. Gracie ad Sarah are still at Wolfson's in Jax. I have nothing new to report other than that. They should have more news tomorrow. I did check in with the docs in Minnesota to verify that wolfson's is on the right path. I sent a message at midnight last night, and by 1:00 Dr orchard responded. How awesome is that! Anyway, he reassured me that they are doing what would be done in Minnesota if she were there.

What is gram-positive bacillus?

Just a quick science post for all those who might be interested...

"Gram-positive bacillus" is more of a description than a diagnosis. "gram-positive" means the bacteria show up when stained with "gram stain"--a purple stain used to make bacteria show up better on microscope slides. "Bacillus" is a description of the shape of the bacteria. Bacilli are "rod-shaped" bacteria.

Other than that, there is a list as long as your arm of species of gram-positive bacilli. They are mostly harmless--mostly.

Gram-positive bacteria have weaker cell walls than the gram negative kind (the weaker cell wall happens also to absorb the stain--neat trick, huh?), and so are not usually the dangerous kind. "Gram-negative" bacteria tend to be tougher, and those are usually the ones that are human pathogens.

Only two Bacillus species are considered medically significant: B. anthracis, which causes anthrax, and B. cereus, which causes a foodborne illness similar to that of Staphylococcus. If any of you docs out there know of any other bacillus baddies, please report them immediately to Wiki. ;-)

Now I'm all the way up here in Philly, so I don't know first hand, but I would venture to guess that we're talking about B. cereus in this case. I seriously doubt that the folks on Gracie's medical team would be behaving in such a cautiously lackadaisical way if she had anthrax...

Hospital update

Just wanted to give everyone a quick update. Gracie's second culture also had a gram positive Bacillia, which is some sort of bacteria. A staph or something similar. Weird thing is that she has no fever and is bouncing off the walls in that hospital. The infectious disease doctor came by and sounds like she thinks the infection might bed in her catheter. They should know what the bug tomorrow, and will know if ots in the line or her body by Monday. I'm a little concerned by the lack of urgency on their behalf, but not sure there is much I can do about it. I plan to email Dr. Orchard tonight to see if he has an opinion on this.

Good news is Gracie seems to feel great. I'll keep you posted on her progress.

Uncle Mack

Quick Hospital Update

Gracie is at Wolfson Children's in Jax. I was there last night to see her and she looked fantastic. She was happy and playing, and wanted nothing more than to get on the shiny colorful floor and play, but no no no... No floors in the hospital. They have a big oval shaped crib with a big clear, tinted plastic "hood" over it. She loves to pull herself up and cruise around it (she even completely let go once). She also loves to bang on the plastic hood. :)

It has been a couple of months since I've seen her and she looks so much better. First off, she has a full layer of hair on her head. It's short, but dark. Also, one of the anti-rejection meds she takes makes her furry all over. She has a nice layer of fur on her back and shoulders... very cute. I wish I had taken anti-rejection meds when I was in high school and college. I would've dated a lot more (bu-dum-ching). Not sure how namy of you remember what a monchichi is, but she looks eerily like a monchichi.





On to medical stuff. While still not 100% sure, it sounds like the positive culture was for a skin staph infection. I'm no doctor, but it sounds a little odd that a skin infection would show up in a blood culture, especially when Gracie has no open wounds or anything. Our current best guess is that the sample the collected was contaminated between the time they drew blood and the time they started the culture. They took two additional samples to see if anything shows up.

Regardless, giver her weakened immune system, the safe call was to admit Gracie and fill her up with powerful anti-biotics. She'll be in the hospital for a couple more days until they can rule out the infection.

Thanks for checking in.

Back in the hospital

Noni called me this AM and told me that the lab at Nemours called and that something grew on one of Gracie's cultures. I'm not sure of any details, but the asked Sarah to pack up and come to the hospital in Jax. Hopefully nothing to panic about, but figured you all would want to know...

I think they'll be at Wolfson Children's. The plan is to stay there for at least 2-3days. I'm sure they'll want Gracie on some high octane antibiotics to help her fight whatever grew on the culture. Hopefully she'll be discharged shortly, but this is a good reminder to keep on our toes.

Please say an extra prayer for Gracie across the weekend. We'll update as we learn more.

Uncle Mack

Fun times with Gracie...

So, Gracie's appointment on Tuesday went well. We got there and first thing we got great news that Gracie had not only maintained her weight, but she had gained weight despite having her TPN reduced! We were so excited- and so was our Nutritionist!

Gracie had a quick meeting with the doc who said she looks great, followed by her routine blood draw. She also had a repeat RSV culture (from her nose). As has become our routine, we stuck around in Jax to make sure that the blood draw was sufficient for accurate results before heading home. We got a call from our nurse and she told us that it was all good and we could head home. Also, her RSV test was negative! Yay!

We got home from our long day and Gracie immediately settled down for a long nap. When she woke up, she was screaming her head off and when I went to pick her up, I noticed that she felt warm. Oh no- not again. We took her temp and again she had a fever of 101.5. We called back over to Nemours and got Dr. Joyce on the phone and it was a dose of Tylenol and back to the Lake Shore ER for Gracie. She had another round of cultures drawn and was again given an IV antibiotic. The next morning her fever was down, but our doc sent us back to the ER for one more dose of the antibiotic again. Since then she has been fine and her normal sweet self and no fever to be found. Nothing has shown up in her cultures either. No one knows why she spiked the fever, but everyone seems to be in agreement that Gracie is ok. My personal opinion is that Gracie has become dependent on her daily routine.... she is like a finely tuned weather instrument, as Uncle Mack would say. :)

On Tuesday, our clinic day in Jax, Gracie's routine was clearly disrupted. First of all, Gracie is very "regular", if you know what I mean. She basically has a pooping schedule that begins first thing in the morning and then happens at least once or twice more throughout the day. (I hope I am not grossing our loyal readers out with this lovely topic.) Well, on Tuesday, she didn't poop at all until well into the evening. This is a huge deviation from her schedule. Follow that with a long day spent mostly strapped in her carseat and you have a baby who doesn't feel so well. Since then, she has been back on schedule and happy as a clam, so who knows. We're going to see if maybe coming straight home after our next appointment will help. I certainly hope so.

Also, the best news came yesterday. Our Nutritionist called and asked if we were feeling adventurous, and despite our fever adventures, we told her we were. So I am pleased to announce that I hooked Gracie up to her last bag of TPN tonight!!!! Woohoo! As of tomorrow, Gracie will finally sleep without being attached to any tubing or pumps. I am so excited! Of course, we will be really pushing the food and fluids on Gracie to prevent having to restart her TPN regimen, but for now, we are so pleased that she is making such excellent progress and taking huge strides in her recovery.

So to end this long post, here are the pictures I promised. Smile and enjoy.

No news = Good news

But thats no excuse for yet another slack in posting. Sorry all.

Gracie continues to do well and is still not showing any visible signs of RSV. We go back to Nemours on Tuesday and I am hoping and praying that we will get a negative RSV test so that we can celebrate Gracie's official germ-kickin' immune system and get back on course with getting our Speech and Physical Therapies going and getting out and about again.

She is eating and drinking very well these days. So well that her TPN just got reduced to 10 hrs a night from 12. I'm hoping that Tuesday will bring another good weight and the chance to take it down again to 8 hours! How wonderful would it be for Gracie to be tube free every night??? She's working on it and I couldn't be more proud of her.

Her hair is coming back in full force... she just gets fuzzier and fuzzier. She officially needs a haircut now. Its starting to grow over the tops of her ears. She is just so cute and fun to be around these days. She's crawling all over the place and pulling up on everything. As soon as she figures out how to keep balanced, we are going to be in trouble... she wants to walk so badly.

I've been snapping lots of cute pictures of her lately and I hope to post a few tomorrow if I can. Stay tuned.

xoxox