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ModDot
PUMPKIN ALL THE THINGS
Member since 8/11 2196 total posts
Name:
Trissy
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Re: Please hug your babies UPDATE page 17
Posted by ElizaRags35
No real update. I'm just having a bad day. Everyone and everything annoys me.
I was so spoiled with the level of care in PICU that I'm frustrated with the regular floor. I felt more comfortable leaving Lila in the care of the PICU. I could leave the hospital to grab dinner or run home quick. Here on the regular floor, not so much. I feel like we're practically fending for ourselves with the exception of giving meds. They were so much more organized and informed in PICU too. Here I feel like I have to go over everything or explain things whenever there's a shift change. Also for instance, shift change was at 7 and I still have no idea who our nurse is for tonight.
The dr did mention something about how we'll see how things are at the end of the week and if Lila is doing well off the cannula (which she's still on) she may be able to go home even if she has the ng tube. I don't know how comfortable I am with that. Of course speech and swallow didn't come to work with her today and they won't let us attempt bottle feeding ourselves bc there's a risk of aspiration since she does not suck on the nipple.
I'm just very frustrated.
So much love and hugs and prayers  
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Posted 3/1/16 12:39 PM  |
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Long Island Weddings
Long Island's Largest Bridal Resource |
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Please hug your babies UPDATE page 17
Always thinking about you guys Liz and PLEASE if there is ANYTHING that we can do, please let us know. Even if you want help planning the birthday party, I'd be happy to call places or find out any and all information so it's one less thing for you to worry about. You focus on baby girl, we're all here for you!!! XOXO
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| Posted 3/1/16 12:52 PM |
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Re: Please hug your babies UPDATE page 17
Posted by ElizaRags35
No real update. I'm just having a bad day. Everyone and everything annoys me.
I was so spoiled with the level of care in PICU that I'm frustrated with the regular floor. I felt more comfortable leaving Lila in the care of the PICU. I could leave the hospital to grab dinner or run home quick. Here on the regular floor, not so much. I feel like we're practically fending for ourselves with the exception of giving meds. They were so much more organized and informed in PICU too. Here I feel like I have to go over everything or explain things whenever there's a shift change. Also for instance, shift change was at 7 and I still have no idea who our nurse is for tonight.
The dr did mention something about how we'll see how things are at the end of the week and if Lila is doing well off the cannula (which she's still on) she may be able to go home even if she has the ng tube. I don't know how comfortable I am with that. Of course speech and swallow didn't come to work with her today and they won't let us attempt bottle feeding ourselves bc there's a risk of aspiration since she does not suck on the nipple.
I'm just very frustrated.
My breaks for you. I have not been through anything close to what you are going through, but I can speak from experience of being in pediatrics in the hospital with an infant...I know you didn't ask for advice, but I'll share my experience just in case.
You have to speak up, and you have to engage the nurses. They are most likely overwhelmed with patients, meaning that there are just too many patients assigned to one nurse, and there is no age or severity of illness limit to that number. You have to basically be annoying, but who cares, this is your baby, and it is their job to care for your baby. You can bring them cookies, bagels, etc, it's almost like you have to get enough attention. But it's even better when you can do that because you're receiving the optimal care.
If a specialist was supposed to see you, you have to keep asking until they do. It is a drastic change from the PICU and I'm sure you feel completely drained at this point and don't want to have to argue, but you'll find the strength and know that there are so many prayers with you.
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| Posted 3/1/16 12:54 PM |
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edfilippi
LIF Adult
Member since 8/12 997 total posts
Name:
Erica
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Re: Please hug your babies UPDATE page 17
Posted by jessnbrian
The step down units are always less than the ICU's, we experienced the same with grandma last year. Have you met with social workers yet? Because that's going to be very important in making sure that things are being done that you need/want as well as making sure that you are as prepared as possible for her return home, including having the nursing care you will need and any supplies. Don't be afraid to speak up for yourself and your little one, even if it means screaming at the nurses in full blown "terms of endearment" style. You better believe if I were in your shoes those nurses and PCA's (nursing assistants) would know me by the way my walk sounded.
I am so sorry that your little girl is going through this. ????????
As a nurse in a hospital on a regular floor - it is a transition from going from the ICU to a general floor. The patient to nurse ratio is higher which means less 1 to 1 attention. For example - my general ratio is 6 patients to 1 nurse which gives me 10 minutes every hour to spend with a patient. 10 minutes is a blink of an eye when you are helping to the bathroom, changing incontinent patients, giving medications, answering phone calls from drs, family members, different departments, sending and receiving patient from procedures. Sometimes I won't see a patient for 2 hours depending on the acuity of the others. Sometimes when we are not hovering around the room or checking in very frequently it is a good thing - it means we feel the patient is stable and is not giving us cause for concern.
I completely agree about being an advocate. Ask in the morning about when therapy will be - I am sure the nurse will call and ask the therapist when she/he will be there. If you truly don't feel like you are getting the care you need than speak to the floor manager. They will speak with their staff about your concerns/needs. Then if you still don't feel you are getting the appropriate care speak with a patient advocate.
Screaming at the nurses "terms of endearment" style is not the best approach or making sure the staff know you by the way you walk. Mutual respect is the best approach. As a nurse I know that you know your child better than anyone and I am here to help both of you. If you need something let the nurse know - I am sure they are more than willing to help with anything you need.
The stress of having a sick loved one especially a child is so much to bear. Take one day at a time and when things are hard 1 minute at a time. You are doing everything you possible can to help your daughter. Speak with social work and care managers about discharge which will make you more confident about the entire process.
Sending lots of get well wishes and prayers to you and your daughter.
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| Posted 3/1/16 2:03 PM |
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buttercup
St. Jude pray for us...
Member since 1/11 2951 total posts
Name:
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Please hug your babies UPDATE page 17
Came back to check on you.. keeping your little baby in my prayers.
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| Posted 3/1/16 2:29 PM |
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Please hug your babies UPDATE page 17
Sending you hugs.
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| Posted 3/1/16 8:19 PM |
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ElizaRags35
My 2 Girls
Member since 2/09 20494 total posts
Name:
Me
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Please hug your babies UPDATE page 17
I ended up going to the patient advocacy office this afternoon to let them know that I am unhappy that we've been waiting since Friday to see the speech and swallow therapist. I was told throughout the day that they had been continuously trying to get in touch with them but they never came. We now have an appointment set up at around 8am tomorrow. They have to hold Lila's feed so she will be hungry and hopefully take a bottle so if they don't show up, I'm raising hell.
Other than that, she was taken off the nasal cannula today and has done well on room air. She got her last dose of antibiotics and is still weaning off the phenobarbital and onto keppra for her seizures. Her eeg from yesterday showed improvement but still showed spikes which are potential seizures. She's still not responding to sounds or lights and she's still not tracking. She is awake much more but still very miserable. Im sure it's not fun having people poke and prod you all day long while you eat through your nose.
Oh and she is 6 months old today!
Message edited 3/1/2016 11:56:17 PM.
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| Posted 3/1/16 11:55 PM |
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jj8182
LIF Adolescent
Member since 9/10 594 total posts
Name:
J
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Re: Please hug your babies UPDATE page 18
That's terrible about the speech and swallow therapist, I'm glad you went to patient advocate. They are usually helpful in getting things done. That's great that she's off the oxygen, it seems like things are slowly improving?
I'm so sorry that she has to spend her 6th month birthday in the hospital  Continued prayers
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| Posted 3/2/16 7:34 AM |
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Aries14
Can't plan life...
Member since 8/08 2860 total posts
Name:
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Please hug your babies UPDATE page 18
I just wanted to chime in and say that my daugther is on Keppra and it has done wonders for her. 
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| Posted 3/2/16 8:52 AM |
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Loveme
LIF Adult
Member since 6/11 3170 total posts
Name:
Me
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Please hug your babies UPDATE page 18
Thanks for taking the time to keep updating us. Continued prayers for Lila!
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| Posted 3/2/16 8:55 AM |
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BargainMama
LIF Adult
Member since 5/09 15657 total posts
Name:
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Re: Please hug your babies UPDATE page 18
Posted by ElizaRags35
I ended up going to the patient advocacy office this afternoon to let them know that I am unhappy that we've been waiting since Friday to see the speech and swallow therapist. I was told throughout the day that they had been continuously trying to get in touch with them but they never came. We now have an appointment set up at around 8am tomorrow. They have to hold Lila's feed so she will be hungry and hopefully take a bottle so if they don't show up, I'm raising hell.
Other than that, she was taken off the nasal cannula today and has done well on room air. She got her last dose of antibiotics and is still weaning off the phenobarbital and onto keppra for her seizures. Her eeg from yesterday showed improvement but still showed spikes which are potential seizures. She's still not responding to sounds or lights and she's still not tracking. She is awake much more but still very miserable. Im sure it's not fun having people poke and prod you all day long while you eat through your nose.
Oh and she is 6 months old today!
Happy half birthday to Lila!
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| Posted 3/2/16 8:57 AM |
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Pinkisles
<3
Member since 11/13 2868 total posts
Name:
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Please hug your babies UPDATE page 18
Great that she is doing well on room air! And hopefully the therapist will be there on time. You're doing a great job
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| Posted 3/2/16 9:26 AM |
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nrthshgrl
It goes fast. Pay attention.
Member since 7/05 57538 total posts
Name:
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Re: Please hug your babies UPDATE page 18
I'm glad to read that she's doing better. I hope that patient advocacy can help you with speech & swallow. She sounds like a little fighter.
I was on PB when I was a baby for seizures related to high fevers and on a vent (my guess was they didn't have RSV diagnosed back then). I hope she continues to improve & many, many hugs to you. It's such an emotional rollercoaster with a baby in the hospital combined with another at home & feeling so torn.
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| Posted 3/2/16 10:35 AM |
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ANewDayHasCome
Love multiplies, not divides
Member since 11/12 14481 total posts
Name:
Me
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Please hug your babies UPDATE page 18
I check this thread every day for updates and I am always thinking of you and Lila. I cannot imagine what you're going through. You're in my thoughts and prayers.
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| Posted 3/2/16 10:56 AM |
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Re: Please hug your babies UPDATE page 18
Still thinking of you, and wishing you the best!
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| Posted 3/2/16 11:20 AM |
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J9-13
We're gonna be big sisters!
Member since 6/06 14887 total posts
Name:
J9
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Re: Please hug your babies UPDATE page 18
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| Posted 3/2/16 11:33 AM |
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hope417
LIF Adolescent
Member since 6/12 718 total posts
Name:
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Please hug your babies UPDATE page 18
Oh my. Just read this all. Sending the worlds biggest hugs to you and your sweet little girl. You're in my thoughts and prayers as you get thru this...
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| Posted 3/2/16 11:53 AM |
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Pomegranate5
LIF Adult
Member since 2/11 4798 total posts
Name:
Pomegranate5
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Re: Please hug your babies UPDATE page 18
Hang in there! 
Hoping Lila continues to improve.
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| Posted 3/2/16 12:06 PM |
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BsMomma2014
Fly high little one
Member since 6/10 2662 total posts
Name:
nicole
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Please hug your babies UPDATE page 18
Glad you went to patient advocacy, hang in there
Continued prayers
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| Posted 3/2/16 1:01 PM |
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Re: Please hug your babies UPDATE page 18
Praying so hard for you!!!
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| Posted 3/2/16 3:04 PM |
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Hofstra26
Love to Bake!
Member since 7/06 27915 total posts
Name:
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Re: Please hug your babies UPDATE page 18
Continued prayers for little Lila!! Happy 6 month bday to her as well!!
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| Posted 3/2/16 3:19 PM |
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Please hug your babies UPDATE page 18
Great job on the room air little warrior!
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| Posted 3/2/16 4:23 PM |
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gina409
TWINS!
Member since 12/09 27635 total posts
Name:
g
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Re: Please hug your babies UPDATE page 18
Happy half birthday baby girl!
Continues prayers and hugs!
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| Posted 3/2/16 4:40 PM |
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MichLiz213
Life is Good!
Member since 7/07 7979 total posts
Name:
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Please hug your babies UPDATE page 18
Happy Half Birthday, Lila!
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| Posted 3/2/16 6:10 PM |
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cowgirlkate
Twins times TWO!
Member since 1/11 1197 total posts
Name:
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Re: Please hug your babies UPDATE page 18
Happy birthday, Lila!!
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| Posted 3/2/16 8:53 PM |
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