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My sweetie is sick - Page 4

post #61 of 94
I check for news from you every day- thinking of you and hoping she responds well to the antibiotics and her pneumonia clears quickly.
post #62 of 94
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.
post #63 of 94
Thread Starter 
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.
post #64 of 94
: 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!
post #65 of 94
Thread Starter 
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.
post #66 of 94
Pixie, that's awesome news about Little Miss. What a lovely gift (the Angel music CD). Continuing to pray for strength and healing.
post #67 of 94
I'm so glad to see good news today! How wonderful! I hope she continues getting stronger. :
post #68 of 94
Glad to hear that she's doing a bit better. Sending you good thoughts that she continues to make improvements.
post #69 of 94
Yippee! Yippee! Yay! I am so glad she is doing better! What a sweet idea to give you that CD!
post #70 of 94
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.
post #71 of 94
Thread Starter 
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!
post #72 of 94
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!
post #73 of 94
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!
post #74 of 94
: : : : : : :
I could go on all night with those! What wonderful new! Many many
post #75 of 94
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.
post #76 of 94
What wonderful news! I'm so very happy for her and all of you. That is just GREAT! : : :
post #77 of 94
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!! :::::
post #78 of 94
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.:
post #79 of 94
What wonderful news!
post #80 of 94
Thread Starter 
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.
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