Christmas all year long!

[lovethattink]

Hoping she kicks the infection quickly!

 

[Monknmom]

Hey, tell your son thank you and happy Veteran's day! I know that he's still serving, but thank him anyway!

 

[annmarieda]

Great about the 10 cath working (not so good what happnened at school)...not so good that the poor baby has a fever/infection! Hugs and prayers that she gets over the infection soon!

Thanks so much! I am not sure what the deal is with her fever. She had a rough night.

Sorry about the crown... but now that it's done, I guess it counts as a good think!

It is good to have it done for the most part. I mean... just have the temp on and won't get the permanent one until the 23rd, but... it is good to have the hard part done. (even if I do have a very sore mouth even today and feel like I have a wad of chewing gum stuck on my tooth.)

See you guys deserve some good so some good came to you! I am happy that Zoe can do it herself, but sorry that she had to go through pain first. I hope that school kids are not being mean to her about it, although you will always have those few! So are you just going to stay with 10's or go back to 8's?

Oh and this ticker drives me nuts-- I liked that it said days and now it's back to weeks. I know it's less time than the days were, but I liked the word days instead of weeks! Makes it sound closer!

I ordered all 8's for this month. So basically, I have a month supply of 8 and a month of 10 (not sure how I have acquired the extra ones) So I don't know what I am going to do ..maybe go back and forth. The 10's make is so that it is far quicker in the bathroom..so I prefer them, but I am scared to rely on them and then take them to WDW and end up needing the 8s.

Hoping she kicks the infection quickly!

thank you.

Hey, tell your son thank you and happy Veteran's day! I know that he's still serving, but thank him anyway!

Thank you, I will.

 

[annmarieda]

I spoke with the nurse yesterday and she was thinking that even a dilatation on the 7th should happen. I talked with her about how it would make me nervous since we fly just two days later. She would fly with tubes in..and while that isn't the end of the world (actually might make things easier since trying to cath in one of those bathrooms could be problematic) I worry that should ANY complication occur while in the OR we could end up last minute canceling the trip. How awful that would be. I just hate to take risks like that...

So the care team is trying to figure out what to do... I am wondering if we really need to do anything. But...then again, she does have this fever so something is weird going on.

 

[swwake]

Oh I hope that fever comes down soon. I know how we hate to see our kids not feeling well.

I also hope they can work out the surgery so that you are comfortable with it, the dates, or whether it's needed or not.

 

[shocky5]

I spoke with the nurse yesterday and she was thinking that even a dilatation on the 7th should happen. I talked with her about how it would make me nervous since we fly just two days later. She would fly with tubes in..and while that isn't the end of the world (actually might make things easier since trying to cath in one of those bathrooms could be problematic) I worry that should ANY complication occur while in the OR we could end up last minute canceling the trip. How awful that would be. I just hate to take risks like that...

So the care team is trying to figure out what to do... I am wondering if we really need to do anything. But...then again, she does have this fever so something is weird going on.

Jeez... Zoe needs a break, now! I'm sorry she had a rough night and is not feeling well. What did the care team/nurse say about that?

What are the risks in waiting until you return in regards to her situation currently? Spasms or blockage?

 

[swwake]

I am where you were a week ago - watching my ticker to see the "'one month" thing drop off of it. I guess I'll have to wait 5 more days...

 

[dizneeat]

Ann, you all need a break of these ups and downs. I know there is nothing I can do but send lots of pixie dust for a speedy recovery for Zoe and that you can find a a perfect date to have her go to hospital.

You all NEED that vacation, with all that has been going on!

 

[annmarieda]

Oh I hope that fever comes down soon. I know how we hate to see our kids not feeling well.

I also hope they can work out the surgery so that you are comfortable with it, the dates, or whether it's needed or not.

Thank you. It is hard to have her ill. She is normally so easy going. Today she is non stop fussing.

Jeez... Zoe needs a break, now! I'm sorry she had a rough night and is not feeling well. What did the care team/nurse say about that?

What are the risks in waiting until you return in regards to her situation currently? Spasms or blockage?

I have not talked to the care team/nurse today. I did yesterday and told her of the fever...but after the hard night and Zoe still feeling poorly (ok, maybe poorly is an understatement....the kid asked to go to the hospital.) I just don't know what to think.

I am where you were a week ago - watching my ticker to see the "'one month" thing drop off of it. I guess I'll have to wait 5 more days...

Before you know it, it will say weeks... really, I am not sure how we are at that point, but... I will take it cause I do really need this trip to get here so I can try and have a break.

Ann, you all need a break of these ups and downs. I know there is nothing I can do but send lots of pixie dust for a speedy recovery for Zoe and that you can find a a perfect date to have her go to hospital.

You all NEED that vacation, with all that has been going on!

Thank you so much, Karin. It means so much to me that you are all pulling for Zoe. I could not have got through this year without all of your support.

 

[Monknmom]

I really am wishing and hoping and praying that something happens so she doesn't have to go through this, nor you! I hate when Damien gets sick and when he was little and in the hospital a lot I didn't know what to do because I couldn't help him and comfort him so I can't imagine having to keep going through that for either of you! I hope that they come back with something that workable for the trip (because to be honest you need the trip and I'll even buy you a drink for everything that you've been through yourself even- which by the way did you ever go back to make sure that it still showed nothing?) and that's going to relieve some of what Zoe's going through too! for all of you!

 

[momabaarjo]

Hope this makes you smile a little...prayers and pixie dust headed your way!

 

[tankgirl427]

Been thinking about you all morning. I haven't even had a chance to edit PP photos since Monday! But I've been reading and keeping updated (as you know!), I really hope everything is going better today.

 

[lilpixiebabe101]

Sending good thoughts your way Ann for everything hitting you at once. Hopefully they will quickly make a decision for Zoe!

 

[shocky5]

(I love Tammie's fun pictures!)

Jeez... she asked to go to the hospital... poor baby girl!

How is she doing today? Anything giving her a break yet?

 

[KatMark]

Ann, on our way out to dinner with friends and just wanted to see how Zoe is doing today? Has the fever broke? Any change in how she feels?

 

[annmarieda]

I really am wishing and hoping and praying that something happens so she doesn't have to go through this, nor you! I hate when Damien gets sick and when he was little and in the hospital a lot I didn't know what to do because I couldn't help him and comfort him so I can't imagine having to keep going through that for either of you! I hope that they come back with something that workable for the trip (because to be honest you need the trip and I'll even buy you a drink for everything that you've been through yourself even- which by the way did you ever go back to make sure that it still showed nothing?) and that's going to relieve some of what Zoe's going through too! for all of you!

As you know it is hard when you are at a loss at how to comfort your child..but you have to do what you have to do. That being said, yes..I am feeling a bit like all of this has to settle soon.

Hope this makes you smile a little...prayers and pixie dust headed your way!

That does make me smile. Thank you.

Been thinking about you all morning. I haven't even had a chance to edit PP photos since Monday! But I've been reading and keeping updated (as you know!), I really hope everything is going better today.

I am so thankful you have been around for me. Do you know that you are the only one who knew what was going on yesterday? Not any of my friends here...not family...just you. It was helpful. I should have listened to my gut more...like you instructed me to. I just was worried that my desire to be selfish was clouding my judgement. Apparently it wasn't.

Sending good thoughts your way Ann for everything hitting you at once. Hopefully they will quickly make a decision for Zoe!

Thank you.

(I love Tammie's fun pictures!)

Jeez... she asked to go to the hospital... poor baby girl!

How is she doing today? Anything giving her a break yet?

She is doing better today. We did end up going to the hospital. I will post more about that in a bit.

Ann, on our way out to dinner with friends and just wanted to see how Zoe is doing today? Has the fever broke? Any change in how she feels?

Like I just mentioned to Amy, we did end up spending the evening in the hospital. I will post more about that. Her fever is down from 102 to just over 100 so that is good. She is also more lively today...although she is back in bed now.

 

[momabaarjo]

Glad Zoe is feeling better and the fever is down...poor baby (an poor mommie)! Hang in there both of you vacation is around the corner!

 

[ladytink75]

Sorry I haven't been on here to post how things have gone with my spouse and his job.. He officially got fired on the 10th so that means that my trip is postpone for right now unless he finds a job within the upcoming week. If he don't have a job by the 19th I need to postpone/cancel so I don't lose my DVC points for this trip. We can continue to use prayers and pixie dust to make this upcoming week all better.

 

[annmarieda]

Glad Zoe is feeling better and the fever is down...poor baby (an poor mommie)! Hang in there both of you vacation is around the corner!

thanks so much! The thought the vacation is so near is what is keeping me going.

Sorry I haven't been on here to post how things have gone with my spouse and his job.. He officially got fired on the 10th so that means that my trip is postpone for right now unless he finds a job within the upcoming week. If he don't have a job by the 19th I need to postpone/cancel so I don't lose my DVC points for this trip. We can continue to use prayers and pixie dust to make this upcoming week all better.

I will definitely keep you in my prayers. Is there a chance he will look up this way for work?

 

[annmarieda]

Now that I have a moment, I should share how yesterday went. Honestly, I am a bit frustrated by it.

Sooo... Zoe's tempt got up to 102. Not horrible...but definitely more than a low grade fever. Up over say...101.5 the idea is that it is more likely to be a bacterial infection rather than a viral one. However, she has been on cipro for the last week +. She spent most of Thursday and Friday in bed asleep. (not like her...even after her big surgery she was up most of the day)

Given these thoughts, I figured I should share with the doctors. First call was to the primary. I just wanted to call...alert them to the possibility that I needed a new culture ran and to find out if there were any viruses gong around now that do cause a bit higher temp...etc. Well, of course it is urgent now and I should take her to the hospital. I really didn't want to go..I had things I wanted to accomplish this weekend and didn't want to spend it in the hospital.(so this was the bad mom voice in my head) I told the nurse I was basically wanting to know what they would do for her that I myself couldn't do. Oh..well, a proper eval could take place (ok... just so you know...before I get to the end of this story... KNOW that I can and DO make correct and better evals than many health care professionals, especially regarding my dd). I was also told a culture could be ran so treatment could start. I argued a bit with that because really... in an ER they really can't culture any faster and thus speed up her treatment. But I digress...

After my tiny argument with the primary's nurse, I called Childrens. This nurse, while not on Zoe's normal team, was super nice and helpful...but still thought that Zoe having a fever over 101 for 2 days was putting her kidneys at risk so thought she should be brought into the ER in order to get IV fluids for dehydration (I could tell she was not) However, this nurse insisted that I was putting her kidney's at risk because she was sure while Zoe was "trying" to stay hydrated, she probably wasn't. We discussed just going to our brand new hospital here in the town and the nurse believed that it would be sufficient since they could call up and get help should they need it.

Here is where my mommy guilt started to seep in. I mean, I wanted to stay away from the hospital. How much of it was my gut telling me she didn't need to go in and how much was me just wanting to be selfish was unclear to me..so I assumed it was more me being selfish.

So I called back to the primary. Got a different nurse this time who, when she probably shouldn't have, read the previous chart notes that were taken by the other nurse..aloud. Yes, basically I am a belligerent parent who doesn't want to agree to treatment for my child. Whatever.... I attempt to clear it up a bit and make mention that I just don't want to put Zoe through anything unnecessary. If this were any of my other children I would just think this was a bug...and NOT rush off to the hospital.

That nurse then gets the doctor on the line and we chat a bit. She knows Zoe very well. When I told her of how Zoe had been in bed for two days she wanted me to take her immediately. With the pain Zoe was having, she had concerns that there was an abscess in her belly. (remember back a few months ago, the infectious disease docs wondered) Anyway, so I appear to be compliant and tell the doctor that it sounds like a reasonable plan to have her looked at. She did recommend going to Childrens rather than in town since she believed they would not call for help but I had to have some time to think, because remember I REALLY didn't want to drive to Seattle.

It took me a while and some chatting back and forth with Betsy before I decided to take her to the hospital in town. Up until the moment we left I wasn't sure exactly where we would be going. Last minute I decided that if this was indeed a kidney infection or an abscess any hospital should be able to diagnose either of those two things and therefore a trip up to Seattle was not necessary.

Well, I think that I completely blew the minds of the staff there. It was so hard for not only the nurses, but the doctor to wrap their head around all of Zoe's issues. (numerous times I had to clarify things for the nurse and... one time specifically almost made me laugh at the doctor when he asked me if Zoe had the surgery this summer to fix a part of her urinary tract that had NOTHING to do with her birth defect. I looked at him and said.. no, it was because of her other parts and fixing issues related to that. He looked dumb founded for a moment and then said "yeah, that is what I meant" Mhmmmm yeah, those are different body parts..so no that is not what you meant...but ok.

I brought them up to speed with all that had been happening, also noting that I was not convinced that this was not just a bad bug. Zoe had a blood draw which she wasn't particularly cooperative for. Gal that took her blood was awesome though, so I have to count my blessings there. Then Zoe gave a urine sample and we waited. Now, keep in mind at this point the exam consisted of blood pressure, temp, oxygen monitor a look at her belly (where the doc determined she had a lot of gas...hmm...same doc that determined that was Steve's issue a few weeks ago. Make me think he has gas on the brain. ) and a quick listen to the lungs. No looking in her throat, feeling her lymph nodes...nothing like that.

So we wait and finally the doctor comes in to say that she has a uti. I ask how he determined this since I knew a culture of the urine would not have been completed yet and so he must be looking at just the UA. Of course, I was correct..it was based on the UA. I ask then if what he saw was high leukocytes and blood in the urine. I explain that she will have blood just by the nature of the cathing process and that the elevated white is not surprising either. So then he wants to treat with a very first line type antibiotic. I mean... there is no way that a bacteria is not resistant to this would be resistant to Cipro. Anyway, the other drugs are "too much" for him to prescribe. I start to rattle off the kinds she normally takes and he is fidgety. (they are all such extreme drugs). We settle on one that is likely to be a good one (assuming the sensitivity comes back the way it should) Only, I have to tell him the dosage that we have given in the past. He wants 4 times a day...while, what we have always done is just two.

Anyway... in the end we leave with that script in had with the instructions to start her on the "lower strength" type one (of which we have a jug of at home) However, upon further evaluation... I decided not to start that until we have a culture. Here is why.

1. If we do kill off weaker bacteria with this antibiotic we will only give "space" to a stronger one to take over the "environment" Bringing a more nasty bacteria into a higher count is not a good idea

2. I am almost always right when it comes to knowing if she has a uti based on some "tell tale signs" And I have not seen some of the signs that typically would alert me to a possible UTI....other than the increased fussiness and possibly the fever. So honestly I will not be surprised if the culture doesn't show a count high enough to deem it "infected"

3. I never stopped thinking this could just be a bad kid bug. And guess what? Today, she barely has a voice. Her throat hurts and she has a cough. Was something just brewing for the last two days? I wonder. She is still running a fever..but not up over 101.

In the end, I am mad at myself for not trusting myself. I shouldn't be so hard on myself and assume I am just being a bad mom. Don't get me wrong, I was worried about the fever and the lethargy...but down deep I couldn't shake the feeling that if this was one of my other kids I would be sterilizing everything so that no one else got sick and not rushing to the hospital.

I also am not particularly happy with all the medical team for making me feel like I was horrible if I didn't take her in (and that nurse's chart notes ). I feel like they kinda bullied me into it.

We don't have a tiny er copay, but at least it isn't huge....

So now, I just hope that this doesn't slowly work its way through each of us. Remember, Steve doesn't have sick time. I have a busy week this week with work and then two weeks that will be slower...followed by that last week before the trip where I will need to get everything done for the first two weeks of the work cycle. I don't so much worry for Alex...since he can do his school from his bed if need be...and he rarely leaves the house.

So there is how life was yesterday. OH... and one last kink. The order of 8's came yesterday (well, a small portition...turns out most of the order was noted as being "out of stock") Zoe as excited to use them. I allowed her to use one. The next time... we couldn't get the 10 to work.