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Old 04-27-2009, 11:22 AM - Thread Starter
 
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Okay, so VeeGee has been experiencing a very erratic respiratory rate. I knew this was happening from watching/listening to her sleep, and she wore a monitor all night (bells going off constantly) to confirm. Her rate is fluctuating between 9 and 30 (dipping below the alarm threshold of 19 once every few minutes). It doesn't stay on any one rate for very long at all.

I expected some difference in her breathing - since that's what the surgery was for - but I'm wondering if this erratic thing is normal and what it might be a sign of/what might cause it or what the effects could be. The docs are coming in at some point, so I will definitely ask them too, but wanted to kind of know what questions I should be asking. I'm trying not to worry. But the overnight nurse seemed to be kind of concerned.

ETA: I forgot to mention that she did de-sat briefly several times overnight.

Wendy ~ mom to VeeGee (6/05), who has PRS, Apraxia, SPD, VPI, a G-Tube, 14q duplication, and is a delightful little pistol! I'm an English professor and a writer.
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Old 04-27-2009, 12:15 PM
 
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Well, I'd guess that it's a combination of her swelling, any residual drainage, whatever drugs are left in her system, and her pure exhaustion. Her little body has been through a BIG stress! Poor thing!

I would think it's pretty normal, but might keep you in the hospital a while longer

The one other little guy I now locally who had a sphincteroplasty (not combo p-flap) had some significant breathing issues and stayed in PICU for 4 days, then transferred to a regular room and went home almost immediately. It's like he just woke up one morning and his body figured out how to work with it's new muscle arrangement and there were no more problems.

Hang in there, hopefully she's getting better each day!!! Are you getting enough rest???

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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Old 04-27-2009, 12:29 PM - Thread Starter
 
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Yeah, the intern (or main doc's assistant, whatever "rank" - who was also gorgeous ) wasn't overly concerned but did say that, because Dr. Kelly is so conservative, we'd probably be here another night. Ugh and, well, I guess I'm glad too. Since it's a three-hour drive, I'd really hate to have to come back.

The swelling does seem to be pretty much gone and I'm not sure about drainage. But, I'm deciding to not worry.

I'm kind of an insomniac, so the rest is kind of par for the course. I'm fried, but functioning (which is pretty much how I operate!). I am, however, fantasizing about sleeping in my own bed. I was on a road trip before we came here and so, have only been in my bed one night in the past 12 days. Other than that, it's been double bed (with dh - toooooooo smallllll, and not particularly "fun" since VeeGee was in the double bed next to us!!!!), then futon (slightly smallllllller than the double bed), then ICU chair/single scratchy-sheet family relief bed, and now the "bed" in VeeGee's room, which is better than a cot fo sho, but still not my bed. Okay, so that sentence perhaps does reveal a need for a bit more rest :.

Thank you for asking!

Wendy ~ mom to VeeGee (6/05), who has PRS, Apraxia, SPD, VPI, a G-Tube, 14q duplication, and is a delightful little pistol! I'm an English professor and a writer.
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Old 04-27-2009, 04:45 PM - Thread Starter
 
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well, there ya go. we're here for at least two more nights. f^%k!!!!!!!!!!!!!!!!!!!!!!!

Wendy ~ mom to VeeGee (6/05), who has PRS, Apraxia, SPD, VPI, a G-Tube, 14q duplication, and is a delightful little pistol! I'm an English professor and a writer.
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Old 04-27-2009, 05:42 PM
 
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Megan had irregular breathing as well, but they didn't seem to worried about it - but she has always had irregular breathing especialy if she is stressed or has a fever. She will got from hyperventalting (and de satting) when she is awake and when she is sleeping her airaway and breathing relaxes so much that she gets the apnea. She still had a little apnea when we came home from the hospital a week later, but I slept (sat) with her so I knew that she was OK. It has gotten better with time. This surgury has some immediate improvments - but the really big ones and the full recovery take time. We where told 6 month till we would know the full extent of the improvement. We are 3 months in now and if the difference in the next 3 is the same as the past 3 then it really has been worth the pain.
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Old 04-27-2009, 05:51 PM - Thread Starter
 
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Thanks so much, Janice. Yeah, the doctor didn't seem to be too worried. He just felt like we needed to stay until all of the swelling was gone so that we can confirm that the breathing issue is not more serious than we could handle from home. I thought maybe we'd be here one more night, but two, maybe three? bummmmmmer.

On the good side, her voice is definitely stronger and I actually had her make an "s" sound yesterday (first time ever!!!!). That's wonderful.

She is SO over being here. I haven't been ordering the codeine but I'm wondering if I should resume. Every time she sneezes or coughs she cries.

Wendy ~ mom to VeeGee (6/05), who has PRS, Apraxia, SPD, VPI, a G-Tube, 14q duplication, and is a delightful little pistol! I'm an English professor and a writer.
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Old 04-27-2009, 06:19 PM
 
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well, there ya go. we're here for at least two more nights. f^%k!!!!!!!!!!!!!!!!!!!!!!!
Ah FUDGE.

This is one of those times when you KNOW that something is best, but darn it you really don't want to do it!!!

When Connor was admitted this winter for Rota Virus, the Attending Dr came in on day 3 and looked him over, then looked at me and said "I know you want to get out of here, mom...how do you think he's doing?" And I hesitated, I *really* wanted to say "he's doing so much better!" so she would send us home, but I also knew that he wasn't, so I sighed and said "he's still not himself at all" Then after she left I walked down to the coffee cart to treat myself to something sinfully delicious

Hang in there...I wish we were closer so I could come relieve you for an hour, or just spend time having adult conversation!! I love having this forum to "talk" to, but it'd sure be better if we were closer to each other IRL!!

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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Old 04-27-2009, 08:32 PM
 
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That is great news on the S sound - In the first week after Megan picked up F and V and then S by about 3 weeks after - it is fantstic. The really dumb thing is that I had been told by several SLP's that those sounds where not breath dependant and that cleft/VPI kids could make them. Then why right after repair surgury did they show up - hmm.
I feel for you, we had been told that after surgury we would stay 2 nights and there was little chance of readmission - we spent 2 nights and where re-admitted the 3 night - untill a week later. And I we where told several times - ah maybe tommro - then to hear again later - oh another two days . It sounds though like you have an actual bed to sleep in, in both our hospitals I just had a cot and a thin blanket - it sucked, at least they had cable TV.
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Old 04-27-2009, 09:35 PM - Thread Starter
 
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I really am thankful for the sleeping arrangements here. Yet another reason to love Vandy.

She's been sleeping all day long, to the point of becoming a little bit of a concern to the nurse and care partner. At one point, too, she had a retching session (nissen) and the nursing assistant grabbed the suction machine and was going after her. (!!!!!!)

I think I made a really big mistake of backing off of her pain meds. I'm guessing that's what's made her so so irritable today and sleepy. Her eyes have been really dilated too and even when she's been awake she's being laying down. I dunno. I finally asked for meds for her and that's been an hour ago. Hopefully that will perk her up.

Wendy ~ mom to VeeGee (6/05), who has PRS, Apraxia, SPD, VPI, a G-Tube, 14q duplication, and is a delightful little pistol! I'm an English professor and a writer.
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Old 04-27-2009, 10:34 PM
 
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Oh my, I totally missed this thread all together. I hope VeeGee feels better soon and that you get to go home.

-pixie, my dear, and (A-88), N-98, Littlest-06/00-08/00, J-03 & Little Miss Cotton Ball Button-03 (SN), S-05, Hope-loss 09/09, Bean-loss 04/10, and littlePopcorn due feb. 8th -11.
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Old 04-28-2009, 01:02 AM
 
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Poor baby and poor Mama! But a new sound even with her so worn out is great!!!! I hope she perks up soon and that you can get some good sleep tonight. In case it helps with the surgery and recovery gods, I ate a half a Milka chocolate bar today
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Old 04-28-2009, 01:08 AM - Thread Starter
 
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Poor baby and poor Mama! But a new sound even with her so worn out is great!!!! I hope she perks up soon and that you can get some good sleep tonight. In case it helps with the surgery and recovery gods, I ate a half a Milka chocolate bar today
Thanks Carrie!!! Let's hope chocolate works.

The staff is starting to ramp up their concern. She hasn't really moved much at all today and has cried a lot (she doesn't cry really). And then tonight, only three hours after she'd had the tylenol, her fever is higher than I've ever seen it. She runs low temp normally, like 96-97 range, and her fever is at 101. So, for her, that's pretty high.

And of course I'm sitting her watching the monitors, which keep going off because her RR is extremely erratic and keeps dipping low low. A few minutes ago it went down to 4 and then hovered between 4 and 8 for a bit. And her sats went down, but only to 90 (which, I'm thinking, isn't really that bad, I know a bunch of kids on the board kind of hover there - I think). And, finally, she's been way tacchy several times.

Ugh - the roller coaster.

Wendy ~ mom to VeeGee (6/05), who has PRS, Apraxia, SPD, VPI, a G-Tube, 14q duplication, and is a delightful little pistol! I'm an English professor and a writer.
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Old 04-28-2009, 01:26 AM
 
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The pain will make them irritable and sleepy - so will fever, so watch that one. Pain meds (ie tylonal) will mask a fever but you don't want the pain meds to run out of her system, that is brutal and not nice at all. I would also maybe see if they need to run bloodwork to cheack for infection, just to be on the safe side.
Thats horibble about them going after her with the machine - I assume that she is like Megan was - NOTHING in the mouth but liquids, no textured foods, and certainly not medical devices. Megan couldn't even have and NG tube put in, thats why they gave her TPN for a couple days when she had droped 4lbs in 5 days.
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Old 04-28-2009, 10:41 AM
 
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Gosh, hang in there! Poor thing! You AND little VG You must be so tired of the walls of that room by now!

I was telling my husband last night that she's the third little one I know to have had this surgery (although her's is the first combo I've known) and all three had post-op complications. Nothing terribly serious (Megan's were the worst post op, with the infection and the readmission) but still NOT something I'm looking forward to going through with Connor if it turns out he needs this surgery. Ugh. We've been SO lucky so far with Connor's surgeries...nothing major at all, and easy recovery from each one.

I don't eat chocolate, so I can't send you chocolate vibes, but I am going out for Mexican today, so I'll have a big yummy quesadilla for you instead!

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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Old 04-28-2009, 11:21 AM
 
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Oh poor baby. Hang in there, you know: This too, shall pass.
She is adorable btw, in the videos!

-pixie, my dear, and (A-88), N-98, Littlest-06/00-08/00, J-03 & Little Miss Cotton Ball Button-03 (SN), S-05, Hope-loss 09/09, Bean-loss 04/10, and littlePopcorn due feb. 8th -11.
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Old 04-28-2009, 11:29 AM - Thread Starter
 
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She ran a fever all night, but as of a minute ago it was down (higher than her normal temp, but still down). Whew! She also seems more alert.

I had the strangest thing happen to me in the middle of the night. I had gone to bed feeling kind of queasy, but I'd only eaten one meal yesterday and it was something fried, which I don't normally eat, so I wasn't too worried. I don't know if I've mentioned here on this board that I have Crohn's Disease, so nausea is pretty much modus operandi.

Well, I got up to get her some water (she's wanting a lot of water!!!!! ) at, I think, around 2 and felt really really dizzy and queasy, cold sweaty, the whole nine yards. I started toward the bathroom and woke up, god knows how much later, on the floor. I have fainted before, but usually during a tachycardia episode. I've never just fallen on the floor and not remembered getting there. I must not have even put my arms out to catch myself because I have a nice knot on my forehead, and my knee is pretty banged up. When I woke up Grace was calling for me "Mommy, wake up!!" and I had no idea where I was or what had happened and just had that impulse to keep laying there until I realized the floor was cold and that the nurses might come in and see me there. So, it was embarrassment, really, that actually got me up.

I had one more almost-episode like that at around four, but just sat down instead of trying to make it to the bathroom.

I'm feeling pretty out of sorts this morning. So, I'm calling uncle and have asked dh to come and help me out. I hate doing it because it's SO his busy season, but I'm not a lot of good to VeeGee if I'm laying on the floor, huh?

It was so freaky.

Wendy ~ mom to VeeGee (6/05), who has PRS, Apraxia, SPD, VPI, a G-Tube, 14q duplication, and is a delightful little pistol! I'm an English professor and a writer.
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Old 04-28-2009, 12:01 PM
 
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that sounds like orthostatic intolerance. Which from what our dr's have told us it can be annoying but is usually benign. But I'd look into it. fainting isn't normal.
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Old 04-28-2009, 01:01 PM - Thread Starter
 
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that sounds like orthostatic intolerance. Which from what our dr's have told us it can be annoying but is usually benign. But I'd look into it. fainting isn't normal.
Yeah, I broke down and told a nurse about it. I don't want them making a big deal about it, but I don't want to be foolish either. I feel sort of okay today. Really really sore, but okay. I have an appointment when I get back home.

Wendy ~ mom to VeeGee (6/05), who has PRS, Apraxia, SPD, VPI, a G-Tube, 14q duplication, and is a delightful little pistol! I'm an English professor and a writer.
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Old 04-28-2009, 06:53 PM
 
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I do not understand what veegee had done, but I just wanted to let you knoow my family ad I are praying for you and your lo. My son's is having ear tube surgery and I am worried, I can't imagine what you are going through. Jus wanted to send out warm wishes and good vibes.

SAHM Michael 01-07 & Emmy 12-08
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Old 04-29-2009, 09:03 PM
 
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How's she doing? How are you doing? Your body is telling you to remember to take care of yourself, be sure to listen to it!

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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Old 04-29-2009, 09:10 PM
 
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Also wondering how you both are.

-pixie, my dear, and (A-88), N-98, Littlest-06/00-08/00, J-03 & Little Miss Cotton Ball Button-03 (SN), S-05, Hope-loss 09/09, Bean-loss 04/10, and littlePopcorn due feb. 8th -11.
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Old 04-30-2009, 02:44 PM - Thread Starter
 
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Thanks for checking on us! Sorry I haven't updated. I've been up to my eyeballs in, um, POOOOOOOP.

The fever gave way to the most intense diarrhea I've ever seen. In the last 36 hours or so, we've gone through 48 diapers and almost as many sheet changes. I'm pretty sure that it's the abx, but they sent it out for culturing to rule out anything else. Swine flu, perhaps (j/k).

She continued to sleep pretty much non-stop until this morning around 9, at which point she woke up and starting laughing and telling her version of jokes. It's so wonderful to have her back!!!! I've been "introducing" her to the nurses, who haven't seen this VeeGee in a looooong time (like, a year!). It's pretty much like the scenario you mentioned 2boyzmama, in that she's back to herself pretty suddenly.

One of her doctors came in around six this morning and told us that we were going to get to go home today. I was beyond thrilled, of course, and called dh to get packed up to come get us.

And then . . . . Dr. Kelly came in and expressed concern about the diarrhea and decided to keep us one more night. Ugh : But, at least I won't, hopefully, be having to change her every ten minutes on the side of the road for the 200+ miles between here and home. Why not make it an even ten days in the hospital - my mommy capital increases when I get to double digits, right?

I'm pretty slap-happy (can you tell). But VeeGee seems to be really feeling well. I'm SO SO SO happy. She's also starting to get a hang of drinking water without having it squirt out her nose. All in all, I'm pretty grateful and satisfied with all of this. Sure, we've been here a full three days past the "worst case" scenario, but I really respect and appreciate the doctor's carefulness, particularly since "running back" to the hospital would take three hours unless we went to the local hospital and take the docs through the learning curve. I know she's going to do even better recovering at home, but I'm trying to have the glass half full perspective.

She doesn't seem to be in any pain at all. Her last pain med was at 4am (it's almost noon now) and she doesn't seem to be in any discomfort whatsoever. I may ask for a dose in about an hour, just to assist her in sleeping without pain, but I'm not sure if I'm going to yet. Any thoughts on that?

Janice, how long was Megan on meds?

Wendy ~ mom to VeeGee (6/05), who has PRS, Apraxia, SPD, VPI, a G-Tube, 14q duplication, and is a delightful little pistol! I'm an English professor and a writer.
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Old 04-30-2009, 03:33 PM
 
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Was wondering how things were going, glad to see your sense of humor is still intact Can VeeGee have acidopholus or yogurt supplements to help get her back in balance? I will spare you the details of what happened when I had a week of IV Levaquin but it helped a lot.

She really sounds like she is making great progress despite being sick. How are you holding up, Mama? You have to be just exhausted by now.
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Old 04-30-2009, 03:59 PM - Thread Starter
 
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Was wondering how things were going, glad to see your sense of humor is still intact Can VeeGee have acidopholus or yogurt supplements to help get her back in balance? I will spare you the details of what happened when I had a week of IV Levaquin but it helped a lot.

She really sounds like she is making great progress despite being sick. How are you holding up, Mama? You have to be just exhausted by now.
Another reason to look forward to being home: probiotics. Yeah, we're planning on pumping her full as soon as we get home. It's something we do regularly, they just don't in hospital, for some reason.

She really is. I'm proud of her.

I'm tired, mostly tired of being here more than physically. Even though the night was poop-filled it was better (as was the previous one) because the monitors were off. It's much easier to sleep when you're not being beeped at every time she coughs.

Wendy ~ mom to VeeGee (6/05), who has PRS, Apraxia, SPD, VPI, a G-Tube, 14q duplication, and is a delightful little pistol! I'm an English professor and a writer.
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Old 04-30-2009, 07:17 PM
 
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Hang in there...just one more night! Have the poop tests come back yet? I know some are quick (Connor's rota virus test was only a few hours).

Yeah, your hubby owes you BIG time for this Not only does he get all the diaper duty, but you are now entitled to several naps, some good take out, and a nice massage or two

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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Old 04-30-2009, 07:49 PM
 
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I would wait for the culture test but to be honest the fever followed by the pooping sounds like when Megan ended up with C-diff at the end of her recovery. Right down to the normal behaivior. If it comes back positive I would ask for Oral Vancomycin (it is more effective then Flagly to treat C-diff) and get her on Florastore and Culturell right away. After we started the Oral vanco and the probiotics with Megan the pooping had cleared up in about 4 days(much less after 2 days) and she had a clear culture 4 weeks later. Continue with the probiotics for at least a month after - and we give them to her any time her system is stressed or she gets a virus so we don't get a re-occurance.

As far as pain Meds - Megan was on round the clock tylonal/motrin for 10 days and then at night for another week or so. Durring the day she wasn't too bad - she would let me know if it hurt. It may hurt for some time after if she picks up a cold or throut virus as that area will still be very tender. Megan still needs some pain meds for a minor cold as she says her mouth hurts. As much as a hate meds, I redaly give them to her if she is in pain because pain equals reluctance to eat or drink or do anything oral.

Best of luck, this sucks but in the end it will be better. Thankfully she is still young and hopefully wont remeber to much of it
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Old 05-01-2009, 10:37 AM - Thread Starter
 
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Ah crap . . . I had a really fun post all typed up and then it went away.










Cultures came back . . . . :



NO C-DIFF!!!!!!!!!


:



DH is on his way to get us!

Wendy ~ mom to VeeGee (6/05), who has PRS, Apraxia, SPD, VPI, a G-Tube, 14q duplication, and is a delightful little pistol! I'm an English professor and a writer.
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Old 05-01-2009, 11:19 AM
 
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Super news!!!!
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Old 05-01-2009, 01:31 PM
 
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Thats fantastic news!!! Best of luck when you get home, pump her full of probiotics and hopefully the poopies will go away!
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Old 05-01-2009, 02:39 PM
 
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Yay! I'm glad you guys are going home!
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