My sweetie is sick - Mothering Forums
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#1 of 94 Old 05-24-2009, 08:31 PM - Thread Starter
 
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Well, again.
On friday our little miss cotton ball button actually took a long nap during the day (she's 5.5 yo, doesn't nap unless she is sick), but she was otherwise just fine. Before bedtime she needed quite a bit of o2 though, to keep her sats over 90. And by bedtime she was on 2l./h.
Anyway, fell asleep on her brothers arm, and they sleept good for a few hours, but then her pulse/ox started alarming and she was seizing. Low pulse, low o2's, so I turned her o2 up, but the seizure just didn't stop. Grand mal seizure. I started bagging her and my dear gave her anti-seizure meds, they did absolutely nothing. So we had to call the ambulance, I was struggling to keep her sats up even with the bagging. By the time we got to the hospital her sats where down to 30 and they just intubated and put her on a ventilator right away. She still hadn't stopped seizing, so they put in an IV and gave her stronger meds. But she went to status epilepticus before they could stop the seizures.
She was drugged down until saturday, they stopped the meds then, but she didn't wake up. Sunday morning however, she pulled the tube out! She did fine with a nasal cannula and like 4l./h. o2.
Today (monday) the had to put the tube back in and drug her down some more. She just can't breathe on her own.

We don't know what's wrong yet, the blood draws really haven't provided any good answers. Chest x-ray didn't show anything new.
She doesn't have any obvious symptoms. She has lost weight again, even with the GJ-tube. It was working so well and she was gaining, but now we're not sure why she is loosing weight.
It might be something going on in her body atm. though, we just don't know what yet.
It has got to be, I don't want to go to central line and TPN.
And why the frick isn't she able to breathe? We are planning a chest CT, we need more info. on the state of her lungs. They are always bad, but to see how bad it is, and if there's any change since the last one.

I'm worried and scared. My deep, strong fear of loosing her always just kicks me harder at times like these. :

-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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#2 of 94 Old 05-24-2009, 09:01 PM
 
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I'm so sorry, that sounds so scary!!!! Hang in there mama, make sure you take care of yourself during this stressful time!


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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#3 of 94 Old 05-24-2009, 09:57 PM
 
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That's scary. I hope the doctors can figure out something soon!

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#4 of 94 Old 05-24-2009, 10:53 PM
 
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I hope they can figure something out soon. It sounds like a very scary situation.

Misty, mama to my nurslings William(11/4/02) and Parker(7/13/04).
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#5 of 94 Old 05-24-2009, 11:44 PM
 
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Hugs and hopes for quick answers. Wishing you strength.

mama to DS 9 and DD 5 and
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#6 of 94 Old 05-24-2009, 11:46 PM
 
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That sounds terrifying. I hope they get the answer and quickly.

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#7 of 94 Old 05-25-2009, 02:03 AM
 
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We're thinking of you and little miss cotton ball, I hope you are able to get some answers soon.
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#8 of 94 Old 05-25-2009, 03:17 AM
 
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That's frightening. Wishing a quick recovery for your DD.

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#9 of 94 Old 05-25-2009, 06:24 AM - Thread Starter
 
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Thank you mamas.
We are just done with her chest CT, her doc was going to look at the pictures now. (It's his day off today, but he couldn't leave her this sick with no clue about what's going on, he is truly amazing, he's also followed us since her birth.)
She's been having arrhythmia all night, her heart does that from time to time w/o any good explanation. And her pulse is so unstable. The only stable thing is her oxygen need, been on 85% with the ventilator since yesterday.
We're in the ICU btw, but we have our own room, because she doesn't have any immune system atm. So we can't risk being with people. So I actually got a bed to sleep on. Not that I can sleep much here, but it's there.

-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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#10 of 94 Old 05-25-2009, 09:38 AM
 
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Hugs and prayers.
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#11 of 94 Old 05-25-2009, 10:59 AM
 
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many hugs s I'll keep you guys in my thoughts.
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#12 of 94 Old 05-25-2009, 12:11 PM
 
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Oh mama s I hope you get answers soon.
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#13 of 94 Old 05-25-2009, 12:11 PM
 
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Awww, I'm sorry to hear about little miss. Keeping her in my prayers.

: Jewel~ Mama to 4. Quilting & Sewing WAHM living a natural life.
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#14 of 94 Old 05-25-2009, 06:19 PM - Thread Starter
 
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Thank you so much.
Terrible day, her lungs look absolutely terrible on the chest CT. Her doc locked at them, and came and got me to show me how bad it was. (He knows me, he knows I want to see.)
We're having a meeting tomorrow with her ped. pulm. and several other people from her team. We're just not sure what's next now. But we did start her on lots more meds, stronger ones too.
The first thing through my head when I saw those pics was trach and lung transplant. But I really hope we're not there yet. I told her doc what I was thinking, and he had a look in his eyes he couldn't really hide that said something about him being worried too. But he said he's not a pulm., and he's not, so he said her pulm. has to answer these questions tomorrow.
But, we're not exactly wondering why she can't breathe on her own anymore, it's pretty obvious. We have to keep her drugged down and asleep on the vent, or she will fight and pull it out. (Done it many times before.)
I have way to much time to think and worry in this hospital room all day and night.

-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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#15 of 94 Old 05-25-2009, 06:25 PM
 
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Awww, honey, try to get that very much needed rest. You'll be able to handle the stress and the oncoming decisions in a better, healthier way. Sending hugs and prayers your way.

: Jewel~ Mama to 4. Quilting & Sewing WAHM living a natural life.
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#16 of 94 Old 05-25-2009, 08:59 PM
 
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So sorry to hear what you've been going through. I have been in the position of wondering whether my child would make it, more than once. I understand the terror and frustration that comes with situations like these, and I know that no amount of platitudes will make it ok. I hope that her doctors can find a solution to her current crisis. I hope that she is strong enough to persevere through whatever is necessary to make her well. I hope that you can make yourself take some time to relax and rest. Our thoughts are with you.
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#17 of 94 Old 05-26-2009, 10:57 AM
 
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Pixiekisses~ I'm sorry if my posting appeared as a "platitude" as referenced by a pp. I never intended it that way, nor to infer that what you and your daughter is going through is in any way not of the utmost sad and scary situation. I'm sorry if it was misinterpreted by the pp. I truly just wanted to convey, mama to mama, a heartfelt concern. Still keeping your precious daughter in my prayers, Pixiekisses.

: Jewel~ Mama to 4. Quilting & Sewing WAHM living a natural life.
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#18 of 94 Old 05-26-2009, 12:24 PM
 
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Thinking of you and your daughter and sending prayers for positive news.
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#19 of 94 Old 05-26-2009, 05:59 PM - Thread Starter
 
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Thank you guys, I really appreciate everything.

Today's been rough. We're not finished talking and finding solutions yet, it's hard bc she is so unique that we don't have other kids who have "walked this path" before us. (I'm glad in one way, but...)
We're hoping that her new, strong meds will kick in and make her able to breathe on her own again. Even though lung transplant probably will be what we need to do in the future, we don't want it now. We want her bigger and stronger first. She doesn't have much to go on now.
We kinda have to take it day by day now and see.

But, since she's drugged down now, we put in a central line today, and took the tests needed for mito screening and some other biopsi. She really doesn't handle anesthesia well, so we never put her under unless we absolutely have to bc of a life and death situation. Like now. So we decided to do the central line too, her IV will come out soon, and we don't want to poke her all the time with those, but she will need IV meds. We're starting her on a little dose of TPN too, a special one, in addition to the small feeds she's getting in her GJ-tube. She doesn't tolerate too much now before it all comes back up even with the farrell and everything. So, not sure what that's all about. And she is loosing weight, which she really can't.
Maybe we can even save some blood draws by taking them from the central line, at least some of them can be done there even if it's not ideal.

I'm terrified she wont wake up when they stop her meds, we've had episodes before with her hardly waking again from being drugged down, and also with the heart stopping etc. And these arrhythmias she's having is not doing anything to calm me down.
We've been faced with this several times before, her being so sick that we really don't know how it will turn out and almost loosing her etc. I really have no clue how I do this, or how we do it. I think I look more like a zoombie than anything else these days, I can't sleep, and I can't eat. I've been puking every morning. The fear is just vibrating with force in my spine. And holding a iron grip around my heart, my neck, I feel it up in my head too.
Ugh.

-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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No one should have to go through that.

~Tracy

Rockin' mama to Allison (9), Asher (5) and Alethea (3), head over heels in love with my sexy husband, Tony.

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#21 of 94 Old 05-26-2009, 06:34 PM
 
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Mama of three.
 
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#22 of 94 Old 05-27-2009, 11:06 AM
 
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Thinking of you guys.
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#23 of 94 Old 05-27-2009, 11:12 AM
 
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We're here for you.

: Jewel~ Mama to 4. Quilting & Sewing WAHM living a natural life.
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#24 of 94 Old 05-27-2009, 11:42 AM - Thread Starter
 
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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.

-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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#25 of 94 Old 05-27-2009, 11:46 AM
 
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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.


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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#26 of 94 Old 05-27-2009, 05:40 PM
 
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I am so, so sorry you guys are living this nightmare.
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#27 of 94 Old 05-27-2009, 06:04 PM - Thread Starter
 
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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.

-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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#28 of 94 Old 05-27-2009, 06:18 PM
 
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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.
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#29 of 94 Old 05-27-2009, 07:05 PM
 
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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.
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#30 of 94 Old 05-29-2009, 02:17 PM - Thread Starter
 
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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.

-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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