Many Thanks

we are thankful. lewis seems to be doing better- that and he slept through the night last night. finally. thank you.

nate is giving thanks that mommy was distracted while baking their cake for the holiday;) josh is giving thanks that lj let go of his death-grip on daddy's curls. everybody is doing better. we are thankful for all our family and friends for helping us get through this past year. we are so thankful.

Talking Turkey!

Here we go again! Noodles is on a different antibiotic. The sensitivities came back and there was a third bacteria resistant to augmentim. We'll be spending the holiday with Josh's side of the family. Good times. One year ago Lew spent this holiday in the NICU; I think it's fair to say he has NOT had any withdrawal symptoms. We just hope we stay far away from any hospitals this holiday! May your turkey be moist, your mashed potatoes lumpy, and your belts loose.

We feel grateful

Update

Just a quick update as many of you are wondering how the little man is doing. He is in such pain and has cried so much that his little voice is hoarse. It is so unnerving that I have to hold my baby in my arms, forcing the feed into his belly and I'm completely helpless to make him more comfortable.

The culture came back positive for a strep & E. coli infection. It makes sense, since his button leaks so much and the gastric juices have pretty much kept the area of skin around the button moist since the first case of cellulitis reared it's ugly head. As if we haven't waited long enough, we are still waiting for the sensitivities results before we can treat it effectively. In the interim, we have started a dose of Augmentin (a form of amoxicillin) and he's back on Carafate (coats the stomach lining to heal gastritis). If the lab tells us the sensitivity results and this strain of E. Coli and/or strep are resistant to Augmentin we will have to get him on a different antibiotic stat. He's still taking his usual prevacid (for reflux) and of course the round of Tamiflu that was started this weekend. We've been treating his fever with alternating Tylenol and Motrin. It's just a pharmacy here in Arlington!

There is a possibility if the cellulitis cannot be controlled that he will need to be admitted to the hospital for I.V. antibiotic treatment. We're hoping to avoid any hospital visits this Turkey Day. However, if it becomes the worst case scenario at least it can probably be a one day thing. We are also taking him to the surgeon next week to see whether the actual hole for the button needs to be surgically revised....since it's been causing so many problems. Think healing thoughts for Noodles.

Bumpy Road

we've been busy with an over-scheduled week. we keep pushing on but it gets so overwhelming sometimes when life on a daily basis becomes so exhausting. everyday this week, noodles had three doctors/therapy appointments. yikes! meanwhile, nate's teachers had some conferences so there wasn't any school for two of those days. luckily bop took nate to the playground one of the afternoons so he could run all his silliness out. and the other day some friends of his had a playdate and then he want over to "camp didi/bops". and i've been campaigning to get the state program to order and pay for some therapy equipment for lj (before they all leave on vacay for the holiday next week). it was prescribed by Children's hospital and the other therapists who work with us also think it would be highly beneficial to have this equipment assist us at home. but it's really expensive, about $1,000, so hopefully we can get it covered by the assistive technology fund. a minor victory i did manage to forge ahead with the bread chronicles and make this yummy brioche recipe.

i got conflicting news about noodle's GI issues this week from the folks at CNMC in DC. they don't think he is a candidate for the feeding program at Kennedy Krieger up in John's Hopkins. who knows if this is just chalked up to being competitive hospitals or if there's merit in their opinion. but CNMC thinks Kennedy Krieger puts all the emphasis on desensitizing children to oral feeding so that they can increase the volume of feeding nutrition. this is not helpful in the long-term because they think kids like noodles will still have feeding disorders due to the fact that it doesn't teach them to enjoy food. we'll still go to the evaluation at kennedy krieger for the evaluation in a few weeks to hear what they have to say.

yesterday brought about more health worries for lewis. we thought lj's cellulitis was gone but since friday night it has gotten a lot worse and he's done with the keflex. he has had an on-again-off-again fever (usually around 99.5) but yesterday he spiked a 102.5 fever and he had diarrhea. the skin around his g-tube button was bleeding enough to saturate the dressing, go through his shirt, and then stain my shirt. all of this has made him extremely fussy. he also hasn't slept well in a few nights and we can't seem to make him comfortable. he and i headed into the urgent care center around 3pm yesterday so that we could be certain there was no ear infection or strep infection. the on-call doctor took a skin culture so we won't know for sure whether the skin infection was a strain resistant to the Keflex or what not. and due to the high fever and the fact that he didn't have his H1N1 shot yet, he was prescribed Tamiflu. It's really quite foreboding.

we'll see what tomorrow brings. hopefully it's not anything to be worried about and a different antibiotic won't be resistant this time & lj's fever/stomach thing will be just a fluke. but this week promises to be another bumpy ride. we have an appointment with the eye surgeon to see how his eyes are doing & a follow up appointment with the neurologist. we are going to the GI clinic to check on the current cellulitis situation and discuss his nutrition with the dietitian. we're waiting to hear the results from the skin culture any day now. and if he is up to it, he will go to CNMC for his weekly feeding therapy. thinking of the yummy food at our Thanksgiving feast & relaxing with family will definitely bolster my ability to focus and get through these trying times.

Scenes from the Un-Scheduled Weekend

Cellulitis update: Lewis finally seems to be feeling better. After running out to pick up a steroid cream Thursday night (which didn't seem to help) I insisted the doctor needed to take another look at him on Friday morning. I'm so glad we did because he gave us two good suggestions which seem to be helping it heal. The first, to add 2 ml of water to the balloon holding the gtube button in place. The second, to absorb the leaking bile with an I.V. drain sponge loaded (looks like this:
with the steroid cream and calmoseptine cream and secured around his gtube either with tape or this white, webbing stuff that fits around his torso. Nate asked what the webbing was- we told him his brother was spider man:)
General announcement: After getting pretty banged up a the bowling alley this week, Nate had developed close ties with Motrin and Tylenol + the portable DVD player! Long story short, Nate was crying over his spilled lemonade when he threw a monster tantrum leaving the building. He lost his footing and fell down the steps- bashing the back of his head on the pavement. There was an instant goose egg and a little blood and a whole lot of crying. Luckily our doctor's office is only two blocks from the Bowl America and off we went to make sure he didn't have a concussion. At the end of the day, we were all emotionally and physically exhausted. He's now healthy and looking forward to going back to school Monday morning.

Fussy McFusserson

So Noodles has been quite the fussy boy as of late. I changed his button all by myself last Friday (go me!) but was worried that his skin around the button was looking a bit irritated by late that night. All weekend long I applied bacitracin to try and get it to heal. He was also running a low-grade fever of 99.3-99.7.....so i wasn't shocked when the pediatrician wouldn't give him his RSV shot yesterday (since LJ can get pneumonia easily we've gotten approved to have the RSV shot each month during the winter season so this was a routine schedule appointment). In fact, she confirmed that he had cellulitis. If we gave him the shot, his body was trying to fight off something and the respiratory vaccine would most likely be ineffective. So off we went to the GI doctor to confirm our fear.

For me the highlight of the description linked above is "left untreated, the spreading bacterial infection may rapidly turn into a life-threatening condition."

I guess now's not the time to get all hippie health food with the homemade carafate paste and hot compresses. My initial response is always just to let things run their course, but when running its course = death, I have only the mommy worry to thank for the motivation. Thank goodness for heavy-duty antibiotics like Keflex! At least we got the go-ahead to give Noodles probiotics in his formula everyday. Hopefully that will help balance out his digestive system with 10 days of antibiotics. And we've deferred the RSV shot until next week.

On A Roll

Roll 'em, roll 'em from Jenn S on Vimeo.

Trick or Treat

Better late than never, right? Our fun neighbors had a block party. Besides the rain, we all had fun (especially me raiding Nate's loot: lemon heads are too spicey for nate the grape!). Oh yeah, and the travelers whilst trick or treating:) Sugar high? Yes. Glad it's over? Yes. Sunday was mellow and the kids cooperated.

Lew was an elephant and Nate was a wizard a la Harry Potter.I like peanuts!

I like lollipops!