Have the kids been able to come see her yet? What do they think of all of this?
The kids came up yesterday for the first time. Kameron said the other day that the halo looks like a hypnotizing helmet! haha He had a lot of questions about everything from her drain to the halo to the blood pressure machine. He doesn't handle things like this very well, I think he was glad to leave! It will be better once she's out of the hospital. Kassidy just has such a tender heart and she's worried about Kenn being in pain. Keeghan was just interested in the Elmo video in her DVD player. LOL
Stupid doctors. What was their reaction when you pointed to the sign?
"OH no tegaderm? I've never heard of an allergy to THAT before." Yeah, get in line.
How did it go getting her to sit up?
Well she still hasn't sat up all on her own yet. PT got her into the sitting position with support today. She's so top heavy she will just fall forward right now without the support. This is NOT a fun way to build up muscle tone!
How long does she have to wear the halo? Can it come of at all or is it on until they take it off?
She will be in the halo approximately 6 months. I am praying it can come off before Christmas, IF she's healed well enough for that to happen safely. It cannot come off at all until then... she has 8 pins that are screwed into her skull holding it in place.
How are you and Frank holding up?
We're doing ok, I'm tired! When Kennedy was sitting in the wheel chair yesterday, I laid down on the bed next to her and passed out hard for about 10 minutes... maybe longer. I didn't realize how tired I was until then! haha Frank has been busy going back and forth between the hospital and the hotel... he's good at that! :) He spent yesterday and today with the kids and my mom spent the day here yesterday with Kennedy and me. It will be good to be all in once place again... when she's ready.
Are you guys in your own room? Or sharing?
So far we are alone in a 2 patient room :). The nurses say we'll definitely be alone at least until Monday but they can't guarentee anything after that. There are several empty rooms though so I'm feeling optimistic! :)
Once healed, she be as good as new, right? How long do they think she is going to need pain meds?
Well, mostly. She won't be in danger anymore with her neck, which is the important thing. She will never have full range of motion of her neck again. They're not sure how much she'll be able to move it, but they said it's good that she's getting this done so young as that will help. I'm not sure about the pain meds... they told me her hip will hurt for quite some time. I'm not in any hurry to take them away. I can't STAND to see her in pain!
Why won't they let her drink anything?
They wouldn't let her drink anything after surgery until they were sure she would not aspirate or become nauseated from the anesthesia. She is drinking now, but all her liquids are thickened.
When will they be able to take that tape off her IV's?
Hopefully SOON! The drain was taken out of her head this morning so she has 48 hours more of IV antibiotics and then she shouldn't need them anymore. I asked them to please have plenty of antibiotic ointment available immediately so we can start treating her skin right away.
sorry about the tape, is she allergic, or is the tape that strong?
I don't know if it's an allergy or just a reaction, but it's NOT pretty! If you go to Kennedy's carepage, click on "updates" and then in the right corner there is a drop down box where you can choose a date of a specific update... Go down to July 10, 2007 and then you'll see a bunch of pictures of Keeghan... click on "older" and you'll see the picture of the last time she came in contact with Tegaderm. Not fun.
Has she really noticed the halo?
Well she knows SOMETHING is there. She is constantly touching it. We haven't let her look in a mirror yet. I'm not sure if it's a good idea until she's feeling better.
So how do you even pick her up to hold her?
I haven't been able to yet :(. It's killing me that I can't cuddle her, especially when she's in pain. The PT lifted her into the chair yesterday and said I could do it today, but I let her do it again. I'm so scared to hurt her. I did lift her from her chair back to her bed, but it was one quick motion because she was in pain.
How can I pray for you and precious Kennedy?
For Kennedy the biggest thing is pain control right now and that she can build up her strength to do all the things PT wants her to do (sit, stand and then walk). For me, just pray for my patience with the doctors (the nurses and I get along GREAT :)) and that I do the right things to advocate for Kennedy medically.
Is that marker all over her neck and face still or what is that?
That's actually... I forget! haha It's not betadine, even though it looks like it... and we've scrubbed and scrubbed and it won't come off. They said once we get to wash her hair it should come off then. If I think about it I'll ask the nurse the name of it, but it's something they used during surgery to keep the... well crud, I don't know what I'm talking about! haha Let me get back to you on that one!
So do they turn her onto her side and stuff or what? Doesn't that throw off the angle of her neck and head?
Yes, her night nurse turns her every couple hours, to prevent bed sores and to help keep her lungs flowing. Her head and neck are 100% immobile right now, so it's safe to heal. Poor kid keeps trying to nod "yes" and she can't.
Saturday, July 5, 2008
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8 comments:
Thanks for all the info. My heart is breaking for Kennedy right now!! Praying they keep her pain managed and that you guys are holding up ok...
So, I was painting faces at a community 4th of July celebration yesterday and this kid comes up to me to have his face painted and I guess I've been checking your blog so often that your kids' faces are burned into my brain - the kid asked me to paint a firecracker on his cheek and I say, "Ok Kameron." - HE LOOKED JUST LIKE KAMERON...I guess I didn't think about y'all NOT LIVING HERE and the fact that you are all in Philly right now, not to mention we've never actually met in person! I suppose I feel like you guys are just people in my life now, so why wouldn't Kameron be walking up to me to get his face painted? Y'all are obviously in my thoughts right now...I hope Kennedy has a good day and that the doctors are able to keep it together today!
Thanks Renee for doing so good at posting, you are a great blogger. I constantly am checking up on you and your family and wishing I could be of some help.
As always...you are all in my prayers.
Even though I don't know you personally, you are a wonderful mom and Kennedy is one very brave little girl.
Thanks for answering all those questions, makes me feel a little better (and a little worse) somehow. Praying for no pain, so hard to think what she is going through right now (as if you don't know). Arline and I picked out a little something for her today, will send Monday!
Hi, I am a new reader! I know you are super occupied right now, but as much as I enjoy reading your blog, I am lost. Can you tell me where to look in Archives as far as WHY this current surgery needed to happen?
Thanks and we have Kennedy in our thoughts and prayers!
You know I find it amazing that these doctors are shocked about her allergy to that tape because I think I've read here a lot of people have had the same problem with the stuff. Doesn't seem like it would be all that uncommon of a reaction or allergy or whatever it is.
That's probably a good idea that you haven't let her look in a mirror yet. Maybe wait at least until she's all cleaned up. Make her look real pretty with some ribbons in her hair or barrettes and tell her how beautiful she looks.
I remember when CJ was in the hospital and I wasn't sleeping out of sheer worry and with nurses coming in throughout the night and the terribly uncomfortable bed they had for me it was awful. Joe ended up spending the last two nights there for me. I ended up getting pretty sick actually. If you can I highly recommend that you let Frank or your mom stay with her. I remember how hard it was to leave my baby though, but I was no good to him sick an completely exhausted. Take care of yourself.
Still praying!!
Jennifer
Thank you so much for letting us be a part of your families life. We love you all and are praying daily for precious Kennedy's recovery. I can't wait to see her sweet face back at Grace Acres (all the kids will think she's an astronaut with her halo!!). Tell little Kennedy her friends from church say, "We love you!"
Chelsea Bayne
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