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TOC jingles needed for Makena; I think Flashy's too busy to ask...
Topic Started: Nov 2 2010, 06:35 AM (5,124 Views)
Reynard Ridge
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Drivin' The Short Bus
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Keeping you all in our thoughts and prayers.


:jingles:
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RHowell
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oh, no. Just reading this now. :jingles: :jingles: :jingles:


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LostFarmer
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One more round of Jingles. :jingles: :jingles: :jingles: :jingles:
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Buryinghill1
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FlashGordon
Nov 3 2010, 07:30 PM
I will tell you.... we are lucky in that Kena will, I'm sure, make a full recovery. I know there are kids in that hospital that are there all the time, or much of the time, and parents who have to go through this on a regular basis. It breaks my heart. I can't imagine how hard it must be to have a chronically sick child. It really makes me thankful that, knock on wood, my two have been really healthy bar this episode.
You could pay me double and I wouldn't go to PEDS.
Watching my adult pts and their family/friends is horrid enough. Most of our Leukemics don't live long (as in years) after diagnosis. Meeting their young children (often toddlers) crushes me.


:hug: :hug: :hug: Bone-crushing hugs for Team Spicy :hug: :hug: :hug:


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buryinghill2
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It'll be an adventure! We're going on an adventure!
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I work a lot in the peds ICU. The one big difference between kids and adult is this, and most people never think about it. The VAST majority of our peds PICU pts. get better and go home. That is not at all true in the adult population. Yes, the losses in Peds are a thousand times more difficult than in the adult units, but there are far less of them.
I work in a Level 1 trauma center, so the majority of our ICU pts, adults and kids, are traumas. It's amazing what kids can survive. :) There are MANY happy outcomes after trauma in Peds ICU. Not many at all in the adult unit.
That is what makes the Peds ICU bearable. However, it's not for everyone.
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FlashGordon
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Ok we have good news... swelling in her limbs and face have gone down, rash is gone, cardio issues seem to be in check! So the major stuff is doing well.

The bad news is her mouth, nose, and throat are still so sore and bleeding and swollen. This is horrible to say, but it is so bad that it is hard to even look at her without getting all gaggy. She also has large adenoids and tonsils which is compounding the issues... ironically she was supposed to have those removed next week, so much for that!

Anyway she can't even sip liquids (hence all the drama over the oral meds) so she's obviously been on fluids. She can't go home until she can at least drink. They unhooked her IV fluids today and we tried all afternoon to get her to take liquids but she just CANNOT DO IT. It's just like the aspirin drama, she sees it coming and freaks.

Jaci funny what you said about thinking outside the box... we started asking them what we could do to alleviate some of the pain in her mouth and lips, like orajel for babies?? They ended up getting us a benadryl/maalox wash (which unfortunately had to be forced in to her mouth, poor kid) and lidocaine for her lips. It does seem to have helped a bit, she's at least sleeping quietly now without any whimpering which is an improvement.

My pediatrician finally said let's back off the poor kid, keep going with the IV fluids and try again tomorrow to get her to drink. We also contacted her ENT to see if he had any suggestions for handling the throat/nose issues.

I'm pretty much at my breaking point, I've never been this stressed in my entire life. Colton is still nursing, so I've been pumping and/or running home to do feeds when Kena is sleeping or quiet. The running back and forth is starting to get to me. Not to mention Colton is literally attached to my hip usually, he has never spent more than an hour and a half away from me so this has been an adjustment for him too. It's a hard spot to be in because Kena needs me and my attention right now, but Colton is still dependent on me for basic needs and can't understand WTF is going on. I've been doing pretty good mentally up until today but now I'm kind of a nightmare!! I keep having this weird feeling like I'm going to pass out but I think it may be anxiety??

Anyway I appreciate all the stories and ideas and suggestions... keep them coming... you guys are awesome!! The jingles are obviously working, my Spicy little girl seems to be turning the corner finally!! ;)
Edited by FlashGordon, Nov 4 2010, 01:32 PM.
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onwego
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:hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :jingles: :jingles: :jingles: :jingles: :jingles: :jingles: :jingles:
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Delia
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So glad to hear that the big stuff has improved. :woot: But poor, poor little spicy girl. :no: Hopefully now that the swelling in her face has gone down, her nose, lips and throat will follow suit. Lidocaine is good stuff. I remember taking that a few times when I had strep and had a hard time swallowing. Now that K is hooked back up to the IV, you all need to just rest and recharge tonight.

Have you eaten today? Sat down for more than 5 minutes and just close your eyes and take deep, relaxing breaths?? You really, really, really need to do that, so that you don't fall apart physically too. Pretty please? :hug: :hug:
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Corey94
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Oh, Flashie!! We're still here with you...so glad to hear she's out of the woods with the big stuff.

Those sores must be something!! poor baby....you'll need stock in Chapstick!! Or Burts Bees....once she's home.
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MichiganBoundElf
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You are doing wonderfully.

I know what you are going through. My son was a severe asthmatic when he was a wee babe, and I spent many nights and days in the ER in our local hospital with him. He would fight and fight against the oxygen mask -- it was awful. And I had his sister who was 5 or so with me at the time -- single mom with no support system -- so I understand how overwhelming it is and what you are feeling right now.

But you are doing great. :hug: :hug: :hug: :hug: :hug: :jingles: :jingles: :jingles: :jingles: :jingles:

Try and find a bit of re-charge time -- even just plug into an ipod for a few moments and close your eyes. Take some deep breaths and just wiggle your toes and try and relax.

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FlashGordon
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Delia
Nov 4 2010, 01:45 PM
So glad to hear that the big stuff has improved. :woot: But poor, poor little spicy girl. :no: Hopefully now that the swelling in her face has gone down, her nose, lips and throat will follow suit. Lidocaine is good stuff. I remember taking that a few times when I had strep and had a hard time swallowing. Now that K is hooked back up to the IV, you all need to just rest and recharge tonight.

Have you eaten today? Sat down for more than 5 minutes and just close your eyes and take deep, relaxing breaths?? You really, really, really need to do that, so that you don't fall apart physically too. Pretty please? :hug: :hug:
Thanks for reminding me D...... I keep telling myself that if I don't take care of me I am not use to either kid, or hubby!! I'm sat next to her right now, she's sleeping and I've turned all the lights off and shut the door. Hubby just went to get us some drinks. So we are going to try and have some quiet time.

Yeah Corey Burt's Bees is great stuff! It is usually my go-to product for her skin and lips, I love it! We're slathering on the A&D ointment as best we can, luckily she's been ok about me doing it. All the mouth breathing because of the swollen throat and tonsils is definitely not helping things heal.

Oh goodness MBElf I can't imagine trying to do this without a partner... that had to be so tough!! Thanks for the encouragement I definitely appreciate it. :)

Anyway thanks again guys for letting me vent. I feel better after getting it all out. I keep wavering between feeling like I'm going to pass out to wanting to punch a wall. lol.
Edited by FlashGordon, Nov 4 2010, 01:57 PM.
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MichiganBoundElf
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try ice chips. see is she can just hold some ice chips in her mouth and let them melt.
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jillincolorado
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Poor baby that must be just AWFUL for her. :(

Poor YOU for all the running back and forth. This too shall pass...take it one hour at a time!!!!
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Onelanerode
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Oh MBElf, that might be a very good idea. It might help with the swelling and maybe she won't panic if she knows she doesn't have to immediately swallow anything.

Poor spicy girl. :(

And yes, FG, time to take a nap, girl. That's probably the anxiety working on you there (and when was the last time you had a balanced meal?).

Continued hugs and jingles for you all.

:hug: :hug: :hug: :hug: :jingles: :jingles: :jingles: :jingles: :jingles:
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Black Tack
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Her favourite popsicles or freezies? Hugs to you all :hug: :hug:
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