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My sweetie is sick - Page 2

post #21 of 94
post #22 of 94
Thinking of you guys.
post #23 of 94
We're here for you.
post #24 of 94
Thread Starter 
I haven't done anything today, nothing.
I've just been sitting in this damn room and switching between staring at my little miss cotton ball button, cuddling her, talking and singing to her, and watching episodes of series, surfing and listening to soundsbooks on my iPod. I don't have attention span for more than minutes, maybe 20 minutes or something when listning to the books or watching something, then I have to take a break or I will drift of and not catch anything of what's going on (if I try to read a book I drift of all the time, like every minute, so that's why I don't even try). It's not easy trying to keep my head occupied and not thinking to much when it's like that. I'm "happy" everytime I can do something for little miss cotton ball button, just meds, or feedings or whatever, then at least I can do something for her, the rest of the time I just feel useless to her.
I'm so not sure if she can actually hear me, when I sing to her/talk to her, or feel it/know it when I touch her. If I had know for sure, that would make it easier I guess, but I'm hoping, and I'll continue doing it. But it's just that some people believe she can and some don't.

Oh, I almost forgot, good news, her o2 need is down! Today it's been on 60-70% (vs. 85% before). So that's good, I hope it's a sign that the meds are doing something for her lungs.
post #25 of 94
Oh sweetie!

Do you have support? Is your husband, a friend, a family member, able to come relieve you once in a while? Are you able to sleep, eat, shower? You need to remember to take care of yourself while you wait for the meds to do their job.

And I believe that your daughter can at least sense you, you have built an amazing emotional relationship with her over the years, she HAS to be aware of you and your love for her, even while unconscious. Just my opinion, but keep up the gentle touches, the soft words, the positive thoughts. All of that can only help her, and certainly won't hurt her.

post #26 of 94
I am so, so sorry you guys are living this nightmare.
post #27 of 94
Thread Starter 
Quote:
Originally Posted by 2boyzmama View Post
Oh sweetie!

Do you have support? Is your husband, a friend, a family member, able to come relieve you once in a while? Are you able to sleep, eat, shower? You need to remember to take care of yourself while you wait for the meds to do their job.
Well, kinda and not. My dear has to take care of the baby, he comes every day with the baby while the others are in daycare and school, often he brings our other 5.5 yo. as well who doesn't thrive w/o his sister and actually gets sick with worry over her. But then he has to get home, pick up kids and take care of them the rest of the evening and night.
And he is basically the only one I would leave her with for more than 5 minutes.
Her personal assistant comes every day too, and she often entertaines/goes out of the room with the baby so we can get to talk a bit, and have some quiet time with her alone. She is hired only on her, so she doesn't have anything else to do when she is sick. I can take a very quick shower when she is here, and go to the bathroom without the door open.
Usually I forget to eat, but she and the nurses (they know us well and they are so caring) brings me food so I will try to eat a little. It's just damn hard, I don't have an appetite, I'm loosing weight already. (Also bc I'm puking every morning I think.)
And I can't sleep to well, I'm scared and worried, and it's also hard bc of all the sounds and noises, nurses in and out etc. And she needs meds and feeds several times a night too that I do. (I want too, I need to feel that I'm doing something for her, and the nurses coming in the door wakes me anyway.)

Emotional support, however, that I have. My dear is of course amazing, and he is as worried and scared as I am, and he can't even be here all the time. (I can't imagine even leaving this room.)
And her personal assistant has been with us for a couple of years now, and she loves her too, so she is also a support. Not to mention our team of doctors and others, and the nurses here, they've know us for 5.5 years, most of them. And my best friend, she comes as much as I want, she is great.

This is so deep in me, this fear of loosing her. It's very hard to deal with. I can't leave her side, I'm just terrified she will die when I'm not there, I could never forgive myself then.


Quote:
Originally Posted by 2boyzmama View Post
And I believe that your daughter can at least sense you, you have built an amazing emotional relationship with her over the years, she HAS to be aware of you and your love for her, even while unconscious. Just my opinion, but keep up the gentle touches, the soft words, the positive thoughts. All of that can only help her, and certainly won't hurt her.

Thank you, I have this feeling in my gut and heart that she senses me too. Sometimes I think I'm fooling myself when I think that because I want it to be true, but then again I've always listened to my gut feeling and with my little miss it's always been right.
And it can't hurt, absolutely not, so I'm going to keep it up, I also think it helps me, I think I need it too.
Actually, when I think about it, her pulse and o2 need sometimes drop when I am holding her hand or gently stroking her and singing/talking to her, just like when she was a newborn (premature) and I was doing kangaroo care. I haven't really thought of it until now, but maybe that's because she senses me. (Or maybe I'm fooling myself again.) And if it is, I really should never let go of her hand! *freaking out abit*
Uhm, yeah, total emotional roller coaster. Jeeez, everything can just flip me over.
And, I'm so rambling.

I really appreciate all of you, the kind, warm words, support, hugs, thoughts and prayers.
post #28 of 94
Pixikisses, I've been following your posts. I have only my thoughts and prayers to offer you....wish there was more than that.

I don't know if it's true or not, but I used to hear from the medical staff that hearing remains acute, even with heavy sedation, so I have always been one to talk, sing, touch. I've noticed the same things you have with gentle touch.

Wishing you peace.
post #29 of 94
I worked in an intensive care unit while i was a nursing student, and the vast majority of our patients were intubated and heavily sedated. I had a number of patients who, upon waking, told me they recognized my voice and remembered me talking to them while they were intubated and sedated. I made it a point to always address them by name, tell them what I was doing, and if I knew anything about them from family, mention something might find interesting (one guy was a big American Idol fan). So I believe she absolutely *can* hear you- I've seen proof of it.
post #30 of 94
Thread Starter 
Thank you, that is so good to hear. I've kept my habbit of always telling her what I'm doing too, and the nurses do the same thing, so they might have the same experience you do, preemiemamarach. And I'm telling her all sorts off other things too, and singing the songs she love, and reading her favourite books to her.

Today, or this evening, she flatlined. My poor girl, my heart almost stopped too. It was a bit out of nowhere, though it did seem like she was having a seizure, kinda. And suddenly we see her rate and pulse dropping fast, so I rang for help, and then she flatlined. I was kinda glad the nurse was there too, even though I started CPR (well, heart massage). The doc came running with a few more nurses, and the doc took over the CPR for me. I hate it, really hate it. I'm not sure if I was breathing at all the entire time. When the doc took over the CPR I just stood there holding her hand and chanting inside me that she had to stay with me, she had to stay with me. But time kinda stood still until the doc said she had a rythm again. I don't think it took to long, it just seemed like an enternity.
I so felt like "falling down" then, but you know, have to stay strong for my strong, brave, beautiful fighter-girl. I asked my dear to come then, and his sister came and took the kids so he could just bring the baby and come here. And she said she'll have them over the weekend if we want.

The good news is that her o2 need varies, it's been as low as 40% before the flatlining earlier. And a little while after that it was 60%, now it's 55%. So, going in the right direction it might seem. She also has been breathing a little bit against the tube, so we turned the settings down and used assist control. And the doctor was talking about trying her out on a nasal cpap tomorrow maybe, he said that this morning. We'll see at rounds tomorrow morning, after seeing how she is with her breathing and o2 need the rest of the day and night. I really hope we can get her of this tube.
Her central line is working fine, in other news, and she's tolerating both TPN and GJ-tube feeds in small amounts.
post #31 of 94
post #32 of 94
Oh Pixie...my heart just stopped reading your latest update!!!

How terrifying, I can't imagine witnessing that, and it's not fair that ANYONE would have to see that, especially your beautiful daughter.

I'm so glad you have support and help and that the medical staff seems so caring. Please take advantage of whatever you can to help you through this!




post #33 of 94


How utterly scary. Good news that the lines are working, and I hope the cpap works. It would be nice to have the o2 go in the right direction!
post #34 of 94
How scary for you!!

I believe very strongly that our children can *feel* our presence and our love, even when they are not conscious. Whenever dd has been heavily sedated or anything, I always talk to her, stroke her hair, or just be near her holding her hand so she'll know and feel how much I love her and want her to be better.

Please try and take care of yourself a bit, too, mama -- or allow others to care for you as they can. I know from experience that terror of not wanting to leave the bedside, and I also know what a toll it takes physically and emotionally. Can someone bring you snack-type foods that you could munch on throughout the day but not have to leave to eat? Or juice box type things for staying hydrated?

Thinking of you and your little one.
post #35 of 94
just checking in....

you, and your family, have been on my mind today.
post #36 of 94
Oh Pixie. My heart is aching. You and your daughter are so strong. I believe she knows you are there. My thoughts and prayers are with you.
post #37 of 94
Thread Starter 
Thank you all.
I'm beat, I need some sleep, it's just so hard to sleep here. But I'll write more tomorrow, I have to lie down now. Though day. *sigh*
post #38 of 94
I am praying for you! Wow! I am so sorry you have to go through this. I don't know what to say to comfort you. I am just so sorry!
post #39 of 94
:
post #40 of 94

I hope you got some rest and sweetie is doing better today.
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