Piper's Practically Perfect PTR..Wish Trip! 3/2-8...Upd Pg 126- TR Link!! Hooray!

[yinyanggirls]

Piper has been battling a cold most of this week, but her o2 sats had stayed pretty good. Since yesterday those numbers have started to drop, with them getting too low for comfort this evening. After speaking with her Dr, we're going to probably start her on oxygen and home IV's on Monday. A hospitalization right now is just too risky with H1N1 running so rampant. Please keep her in your thoughts/prayers..we were supposed to leave for a mini-vacation in DC Friday, and she's going to be very disappointed. Since we'll be doing everything at home, I'll try to update frequently..

Man, that stinks. At least you can stay home. I hate living in the hospital. I hope she recovers quickly!

 

[pipersmom]

Prayers said for Piper.

More prayers coming your way!

Praying!!

We r sure it is not H1N1, right? Praying for u guys!!

Man, that stinks. At least you can stay home. I hate living in the hospital. I hope she recovers quickly!

Thanks for the prayers guys, every little bit counts! We're 99% sure it's not H1N1, she's had no vomiting, nausea, diarrhea, etc, and her temp hasn't gone over 100. We'd been hoping to avoid the home oxygen thing as long as possible, but knew it would be happening at some point. Good thing for now is that she won't need it all the time Staying busy today, Dr wanted us doing 5!! treatments during the daylight hrs, which basically comes down to finishing one and starting another within 2 hrs. Hopefully it will keep her from getting worse though.

 

[pipersmom]

okay..i'm in....

Thanks Jordan Hopefully I can keep you somewhat as entertained as you kept me last night Seriously though guys, his ptr is very very entertaining..would definitely check it out if you have time.

 

[2specialkids]

Prayers and hugs...atleast you can be at home. That should keep everyone a bit more comfortable.

 

[chrissid7]

Oh My gosh! Most definitely in my prayers. I know we have touched on the similarities, but Alyssa is fighting off this cold too. It was not the dreaded H1N1 but colds are so scarey in our house too. I wish I could help with a treatment or 2. They really do eat up your days. Hang in the there and we are praying for a speedy recovery. Im glad they let you be home right away, our docs make us wait a couple of days so they can test her levels. Its a pain.

Talk to ya soon

 

[jordanyosh]

Piper has been battling a cold most of this week, but her o2 sats had stayed pretty good. Since yesterday those numbers have started to drop, with them getting too low for comfort this evening. After speaking with her Dr, we're going to probably start her on oxygen and home IV's on Monday. A hospitalization right now is just too risky with H1N1 running so rampant. Please keep her in your thoughts/prayers..we were supposed to leave for a mini-vacation in DC Friday, and she's going to be very disappointed. Since we'll be doing everything at home, I'll try to update frequently..

Will be praying!

H1N1 is a doozie. I had it in August.....not good, especially to those with respiratory issues. I think I actually had pneumonia too, but couldn't take any more time off from work.....

 

[pipersmom]

Prayers and hugs...atleast you can be at home. That should keep everyone a bit more comfortable.

Oh My gosh! Most definitely in my prayers. I know we have touched on the similarities, but Alyssa is fighting off this cold too. It was not the dreaded H1N1 but colds are so scarey in our house too. I wish I could help with a treatment or 2. They really do eat up your days. Hang in the there and we are praying for a speedy recovery. Im glad they let you be home right away, our docs make us wait a couple of days so they can test her levels. Its a pain.

Talk to ya soon

Will be praying!

H1N1 is a doozie. I had it in August.....not good, especially to those with respiratory issues. I think I actually had pneumonia too, but couldn't take any more time off from work.....

Thanks all for the prayers and positive thoughts, she was sat'ting last night at 90, which is much better than the 86 of Sat night. I'm probably going to end up keeping her home today and tomorrow on the 5 treatment schedule, and hopefully kick this thing in the butt. The good news is after updating her Dr yesterday, it looks like we're going to hold off on the IVs unless things take a downturn again. We're lucky in that her Drs know that I know what I'm doing and trust my instincts as far as when something more serious is going on as opposed to just a cold or bug she's picked up. Keeping my fingers crossed now that we may not have to cancel DC.

 

[jordanyosh]

Good news! Well let's all hope she continues to get better!

 

[pipersmom]

Good news! Well let's all hope she continues to get better!

Thanks Jordan

 

[pipersmom]

Okay, unfortunately by limbo I do not mean the walk tall and carry a big stick you can duck underneath limbo.

So we get up this morning and get her treatment regime going..9am goes by...10am goes by, still no phone call from her Dr..11..12...I call and speak to Wendy (the secretary), explain I'm not trying to harass Lauren, but wondering what's going on. Wendy explains Lauren seems to be making some kind of arrangements and will call shortly. So Lauren calls about ten minutes later..I explain everything going on (again) and hear..."Well, Dr Froh wants to admit her". For those of you following my updates, Dr Froh was not on call this weekend so I was working with another Dr from the CF Center..they usually tend to agree on treatment options, but obviously this was not the case. So I go into the whole no vomiting mucus--lovely picture, eh?--no lack of appetite, ie none of the normal exacerbation symptoms that Piper shows normally. So Lauren says she'll get back in touch with Dr Froh..and give me a call back. Well, the call back has yet to happen, and won't until sometime tomorrow, apparently. In the meantime Piper's numbers have started to dip again, both awake and asleep.. Frustrated would be an appropriate word right now. Please continue to keep her in your prayers and thoughts and I'll update when I know more..

 

[jordanyosh]

okay. thanks for keeping us in the loop.

 

[maroo]

Okay, unfortunately by limbo I do not mean the walk tall and carry a big stick you can duck underneath limbo.

So we get up this morning and get her treatment regime going..9am goes by...10am goes by, still no phone call from her Dr..11..12...I call and speak to Wendy (the secretary), explain I'm not trying to harass Lauren, but wondering what's going on. Wendy explains Lauren seems to be making some kind of arrangements and will call shortly. So Lauren calls about ten minutes later..I explain everything going on (again) and hear..."Well, Dr Froh wants to admit her". For those of you following my updates, Dr Froh was not on call this weekend so I was working with another Dr from the CF Center..they usually tend to agree on treatment options, but obviously this was not the case. So I go into the whole no vomiting mucus--lovely picture, eh?--no lack of appetite, ie none of the normal exacerbation symptoms that Piper shows normally. So Lauren says she'll get back in touch with Dr Froh..and give me a call back. Well, the call back has yet to happen, and won't until sometime tomorrow, apparently. In the meantime Piper's numbers have started to dip again, both awake and asleep.. Frustrated would be an appropriate word right now. Please continue to keep her in your prayers and thoughts and I'll update when I know more..

Gosh. I am so sorry!

I hope you guys get an answer soon!

I am praying for you guys!!

 

[2specialkids]

praying for health, answers and no hospital..
Keep us updated as you can.

 

[chrissid7]

Oh my gosh girl I am feeling for ya. That is so frustrating when not everyone is on the same page. I hope she is feeling better today! I think I will be asking for a pulse ox reader. Our last doctor wouldnt prescribe 1 because he thought I would worry too much. I think our new doc would do it because its not worry its being informed. I think you are doing a great job being proactive for your daughter. I am calling around today trying to find the vaccine too.

Good luck with all of it I know your hands are full.

 

[pipersmom]

Okay, so Piper is doing a treatment right now and then we'll be headed to Roanoke to get her admitted. I'll update as I can but I can't remember how the net access works up there and I have no laptop. Please keep her in your prayers and thoughts!

 

[stacy347]

Aww... and prayers for both of you.

 

[2specialkids]

Daggone it! I was really praying she'd get to stay home. Take care and let us know how she's doing as you can. I'll keep praying.

 

[yinyanggirls]

Oh bummer. I hope it helps her recover faster, if she has to be stuck in there anyway. Updates when you can.

 

[chrissid7]

I know how crazy it is but please let us know how she is doing. Im so sorry she had to go in but hopefully it will turn her around quickly! Praying for you all tonight and I hope you are able to get some rest as well. I was wondering too and Ill send you a pm but I would like for Alyssa to maybe draw her a picture and send it to her. Alyssa loves person things especially when she is admitted and I would love for her to do it if its ok. You can pm me the info if its ok. Im going to pm you my email.

Get well quickly Piper

 

[maroo]

Oh no! Admitted?!? That stinks!


I am praying for you guys. Hang in there!