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#61 of 94 Old 06-04-2009, 02:54 PM
 
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I check for news from you every day- thinking of you and hoping she responds well to the antibiotics and her pneumonia clears quickly.
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#62 of 94 Old 06-04-2009, 05:58 PM
 
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I'm praying for your little girl for lots of healing and lots of strength and courage for you, pixie. Hang in there! You are doing all you can and you are doing your absolute best! That is all we can ever do for our children. I will continue to keep you both in my thoughts and prayers.

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#63 of 94 Old 06-04-2009, 10:09 PM - Thread Starter
 
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Thank you ladys, it really touches me, all your words, thoughts and prayers.
My dear has also said it several times when I've told him about this thread, that you guys are amazing!

Today, I got a wonderful surprise too, my little miss cotton ball button has gotten several gifts and stuff that are waiting for when she can open them. But, one girl from a little ensemble that I sing with came by today and gave me a CD, and they had recorded their greetings, it was so full of love, and they also had recorded singing Angel (In the arms of the Angel) to me! I just cried, it was so wonderful and so touching. Our one nurse was there too, and she also had tears in her eyes.
She told me to play the CD and sing along to it for my little miss cotton ball button and she will feel all the love from the song as well.

I'm really hoping the antibiotics will kick in today, or actually we expect too see some changes today (meaning friday, as it's past midnight here). Her doc said before he left for home yesterday (thursday) that he wasn't coming back here until her o2 is at least down by 10%. And he is working tomorrow, so, hehe. Somehow though, he says things like that, and they actually do happen. He's usually right when it comes to my little miss cotton ball button and things like that, "predictions"/"demands"/"expectations". So, it will be fun to see if he's right now too, I sure hope so.
Oh, yeah, her o2 need is 95% now btw, so it has to be down to at least 85% by morning. Knowing him, he'll come by us first thing too, so before 8 am. *crossing my fingers very hard*

Her central line is working very well, I'm very happy it hasn't "acted up" in any way, no infections in it, nothing. I'm dreading that. So far, so good.
Oh, gotta go adjust her farrell bag and give some meds now.

-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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#64 of 94 Old 06-05-2009, 02:08 AM
 
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: that doctor knows best! You guys continue to be in our thoughts and prayers. Big s mama, I hope you get some good news soon!
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#65 of 94 Old 06-05-2009, 09:30 AM - Thread Starter
 
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Who wants to guess if her doc was right?
82% when he came by here this morning. We are both very pleased! (Or actually the whole ward is probably, we have some many people here that we've known for years.)
I hope, hope, hope that's the antibiotics and the new lung meds. working together and that her o2 need will keep dropping, and she will start to breathe more on her own. She's been breathing a bit against the vent now, today, so hopefully we'll see more of it and be able to try her on a cpap soon.
I'm longing for her to be awake again, it's weird how you can miss someone you are with 24/7, but I do.

-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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#66 of 94 Old 06-05-2009, 12:22 PM
 
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Pixie, that's awesome news about Little Miss. What a lovely gift (the Angel music CD). Continuing to pray for strength and healing.

: Jewel~ Mama to 4. Quilting & Sewing WAHM living a natural life.
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#67 of 94 Old 06-05-2009, 01:33 PM
 
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I'm so glad to see good news today! How wonderful! I hope she continues getting stronger. :
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#68 of 94 Old 06-05-2009, 01:52 PM
 
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Glad to hear that she's doing a bit better. Sending you good thoughts that she continues to make improvements.
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#69 of 94 Old 06-05-2009, 11:54 PM
 
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Yippee! Yippee! Yay! I am so glad she is doing better! What a sweet idea to give you that CD!
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#70 of 94 Old 06-06-2009, 12:23 AM
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Sending hugs and positive vibes your way.

They have a candle website as well, where friends can light candles for loved ones. I don't know about posting external links, but a quick search can produce the page.
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#71 of 94 Old 06-07-2009, 05:06 PM - Thread Starter
 
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Guess what?!
She is of the vent! Awake, and just has the regular nasal cannula with o2! :
And her o2 need is just 1l./h.

On friday night our other 5.5 yo. came to visit, they have this special twin-bond, and he wanted to lie down in bed with her. We changed his clothes to hospital ones, and used antibac on his hands etc. to make sure he didn't give her any bacteria (he's 100% healthy of course), and we let him. He snuggled close to her, and was holding her hand, stroking her hair, singing to her and telling her stories.
And her o2 need went down, and her pulse came down a little (like we see when we do that too). And he slept in the hospital with us, and was with her the whole day on saturday too, and she improved tons. We stopped (gradually) the meds keeping her sedated and she started breathing a lot against the vent, and moving a bit.
And today she woke up, and was tugging at the tube and stuggling against it, so the nurse just quickly extubated and put her on a nasal cannula and it all went very well!
I think her brother helped, of course her meds helped too, but you know. Combination between good care/meds and feeling so loved by us all, knowing we were right there with her believing in her.

This has been such a wonderful day, I picked her up right away when they got the tube out and her nasal cannula on, and she snuggled close to me and it was so wonderful to hold her again!
My dear and her siblings have all been here now and it was such a joy watching them all being so happy to see her again, and her them. Lots of snuggles and kisses. We just lover our little bunch so much. :

New tests today showed she is getting much better (crp is way down to 80, from 230). And of course, breathing on her own is good.
We're waiting until we're sure that she is completely rid of the pneumonia and then we're having a new chest ct, her lungs looked so terrible on the last one we want a doubble check, even with the "scars" from pneumonia, they can tell that apart. And then we have to think about what we're going to do about treatment, she is on much stronger and more meds now than before, and we're not sure how much she will need now.
She's tired, after the visits she went right to sleep and slept a few hours. And we haven't done much after that, just read and talked in bed mostly, and played cards. That's, of course, expected, she's been through a lot, and is still sick. Needs time.
We're going to try going back to just using her GJ-tube for J-feeds, and not giving her the TPN in her central line, to see how she responds. We're not taking the line out, she needs meds in it and will continue to for a long time probably, so we're going to keep it and go home with it. But we'd rather have her on just her ketogenic diet with the J-feeds.

It's good to have some really great news to share with you wonderful mamas out there, I'm so grateful I have you, and for all your kind words, hugs, prayers, thoughts and vibes going our way!

-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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#72 of 94 Old 06-07-2009, 06:25 PM
 
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OH MY GOSH!!!!!!!

:::::::::: :::

I hope that some way you're able to convey, and he's able to understand, how special he is to his sister :

I am crying happy tears for your whole family right now!

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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#73 of 94 Old 06-07-2009, 09:26 PM
 
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Oh Pixiekisses! I just finally read through this whole thread and I am sooooo happy about your last update!:

Wishing little miss a speedy recovery! to you and your family. Please PM me if you can think of anything I could send you to help out.

Loads of healing vibes, thoughts and prayers right now to you!

Breeder Mama: = wife to an amazing man + mama to J-Bear (07/02) and E-Train (06/08), nanny to Little Bird (07/10).

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#74 of 94 Old 06-07-2009, 10:46 PM
 
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I could go on all night with those! What wonderful new! Many many

 
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#75 of 94 Old 06-07-2009, 11:49 PM
 
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Oh that's great news! You had so many days with bad news, I'm glad some good things started happening!

It's so sweet about her brother.

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#76 of 94 Old 06-08-2009, 12:41 AM
 
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What wonderful news! I'm so very happy for her and all of you. That is just GREAT! : : :

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#77 of 94 Old 06-08-2009, 12:01 PM
 
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I've been following your journey and praying and I am SO glad that she is off the vent and that you can hold her again!! :::::
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#78 of 94 Old 06-08-2009, 12:20 PM
 
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Oh, Pixie, I can't stop crying (happy tears)...my keypad's all wet!! I am so happy to hear this news. What a precious story about her brother. What a very special loving family! Will continue to pray for continued wellness and strength.:

: Jewel~ Mama to 4. Quilting & Sewing WAHM living a natural life.
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#79 of 94 Old 06-09-2009, 03:37 AM
 
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What wonderful news!

lucky mom to Oliver, 8/6/07, and Finn, 11/28/10, and wife to DH
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#80 of 94 Old 06-09-2009, 06:49 PM - Thread Starter
 
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Thank you, thank you, thank you mamas!
All your posts really touches me.
We are also overjoyed and there have been quite a few happy tears here as well! :
We're just amazed over the twin-bond they have, they've been like that since they were little. They don't thrive as well without eachother, and have been known to know when the other one is in "trouble"/pain etc. even when not together.
Our oldest daughter (20 yo.) is done with school for the summer and have been here around the clock now, she doesn't live at home anymore, but only a 10 min. walk away. It's been nice to have her here.
My dear has started the weaning process with the baby (emergency-care) to his new permanent foster home, so they have been at home the last two days with the new foster mom. Not the best timing, of course, but whatever's best for the babe.

Anyway, no real news today, our little miss cotton ball button has been her old self though, and it's just so wonderful to have her "back"! To talk with her, snuggle her, hold her, get kisses and hugs, hearing her saying she loves me, saying it to her, hearing her joking around, playing with her, hearing her sing again. Everything is just so good.
She's been taking a little nap every day, but that's fine, she needs sleep to get rid of her pneumonia completely.
We actually talked about going home soon today. Suddenly, both me and her doc was like, hmm, do we really need to stay now? And we could only think of one reason, and that's to get her stable on only J-feeds in the GJ-tube. We'll have her off TPN tomorrow if things go as planned, and then we'll see what it does to her.
She has been having more seizures now, and we're not sure why, but we're wondering if it's her diet not being followed, or the stress she's been through with all of this, or the pneumonia, or a combination of all the mentioned. So, we are hoping a little more time to heal and following her diet again will do the trick of getting her seizure rate down again.
We'll see if we can go home before the weekend if everything goes smoothly now!
Then we'll just come back for the new chest CT later, and adjusting her (lung) meds can as easily be done at home, we really have to try a route and see the effects over time anyway.

-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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#81 of 94 Old 06-09-2009, 10:27 PM - Thread Starter
 
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Hmm, it's late here, and I should be asleep.
In the middle of all the joy though, I can't help being scared about her heart stopping again. It's done this several times before. And we still have no clue why.
We've done every test imaginable on her heart, and not found anything wrong, nothing structural, no syndroms, no dx or anything genetic etc. that could explain it. Of course, that's good. But also scary, not knowing also means not being able to do anything about it.
Her dx on it is unspesific heart-issues, whatever that means. But it includes arrhythmias, and her pulse being very unstable. Sometimes racing, sometimes dropping very low, for no obvious reason.
It seems to be linked to seizures and infections, but we can't really find a patern or something to put our finger on that is the same every time.
I know I should probably just be very happy and greatful she is awake and breathing on her own, with her that is so not a given at all, and I am, believe me I am. But I can't help but to worry as well, and be scared about this issue.
I think it's also this fear I have of loosing her that's kicking in, it's so deeply rooted in me. I've been like a zoombie more or less when she was on the vent and sedated, just being in a boble and only focused on my girl and how she was doing in that very moment. And not really following the outside world, or anything else, but now it's all just back to hitting me in the face.
Ok, that was all just a long, rambling vent, I think I needed it, now I'm going to see if I can get some sleep.

-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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#82 of 94 Old 06-09-2009, 10:49 PM
 
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It's so rough to see your child in danger like that, and you go into that damage control mode. When things start to calm down again, that's when you start actually processing, and the mind starts its cyclical "what if" kind of thinking.

You'll feel much a better if you can try to get a little rest. I am not usually one to recommend taking medication to sleep, but when I hadn't slept in days and couldn't get off that cycle of worrying about my son, taking something for one night really helped me to get some rest and to replenish my reserves. I hope you can get a little much deserved rest soon.

 
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#83 of 94 Old 06-10-2009, 01:23 PM
 
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Like Queen said, building up your reserves is crucial. I think all the emotions are coming to the surface now, kind of like coming out of shock. Give yourself some time and rest. Being able to converse, laugh & hug your daughter again is a wonderful gift. So happy for you & your family.

: Jewel~ Mama to 4. Quilting & Sewing WAHM living a natural life.
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#84 of 94 Old 06-10-2009, 03:21 PM
 
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I really think that in some ways the week or two or three after a serious scare and hospitalization is worse than the actual time. During the tough part you are sort of on auto-pilot, running on mama bear adrenaline. When it's over you can think, and worry and I think, at least for me, that's when it all catches up with you. We got home a week ago yesterday from a tough hospitalization and I think I am more physically and emotionally shaken than I was during. Things are calm and I guess my body feels like it can afford to fall apart now.


Good luck. It is so hard to be scared. Give yourself time and space to recover. I will be thinking of you.
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#85 of 94 Old 06-10-2009, 04:03 PM
 
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I hadn't seen this thread before and just read through the whole thing. I outright cried when I got to your bringing your son in to be with his twin and how much it helped her. Such a beautiful bond.

I hope your sweet little miss continues to improve and can get back home with you very soon. I know you have all been through so very much.

Betsy, mama to beautiful, strong MZ twins Lillian and Kate, born 11 weeks early on January 10, 2006.
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#86 of 94 Old 06-11-2009, 05:11 PM - Thread Starter
 
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You are of course right, mamas.
You know, you would really think I'd gotten used to the time and thoughts after these situations by now, living with it for 5.5+ years, but I don't think I have.
I'll usually be able to sleep some more when we get home and my dear takes the "night shift" so I know she's completely safe, and I can sleep in our bed etc. And he's not going back to work until she is completely back to her old self, so he'll be able to give me some more rest too. And I'll relax a tad more when I see she's getting better, lower my shoulders from up above my ears to underneath my ears.

My little miss cotton ball button is stable on only J-feeds now, and we're waiting for the effect (might take some days+). But we're thinking about going home tomorrow. It's up to us really, and I've said we'll see how we feel about it tomorrow.
I really want to get home though, if I feel safe and confident about it. I just worry more about infections here (do not want central line infection, it's been working great up til now), and I'm really fed up with hospitals. (Yeah, I know, only 3 weeks this time around, but we've stayed months and years before.)
And seeing my other kids more, and our little miss seeing more of daddy and siblings. Sleeping in my own, comfy, good bed. Having another adult to share the nights with (aka. being awake at night).
It almost sounds like I'm trying to convince myself doesn't it?
We'll see tomorrow.
She is still doing great, thriving and enjoying the days with us, her brother's been here everyday. They've all been here, but she still needs rest so not every day.

Thanks again, everybody! I appreciate you.

-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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#87 of 94 Old 06-11-2009, 05:51 PM
 
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I'm so glad it looks like you'll be home soon!! Take the time you need to readjust, you know that things will settle back to "normal" eventually, but make sure you're taking the time to ease back into it. If you're having trouble sleeping at night, try to sneak away for naps during the day when hubby is around to keep a watchful eye on sweetie.

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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#88 of 94 Old 06-12-2009, 09:00 AM
 
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Wow! What a miracle girl! I am so excited she is doing better. Your fear you describe is probably some post traumatic stress. I can't imagine the stress you have to deal with. I am just so so glad she pulled through and is a happily enjoying life.
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#89 of 94 Old 06-12-2009, 09:49 AM - Thread Starter
 
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Thank you mamas!
She really is our miracle girl, she's pulled through so many things before. She's miracle x many!
I've never thought about PTS before, hmm, you might have a point, Mahre.
And, ehm, naps during the day never even hit me as an option.

-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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#90 of 94 Old 06-12-2009, 12:22 PM
 
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Oh, Pixie! I haven't been to this board in awhile but once I started reading your story, I had to finish. Now I'm late for work, but I'm so glad I read all the way through to the wonderful news at the end. What a terrifying experience you've had these past few weeks. I'm so very, very happy that she's doing so much better and that you will soon be home.

Many prayers for continued recovery.

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