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My little figther
04-15-2009, 07:14 AM
I am so tired of this, my little boubou never seems to get a break. I don't even know who to pray to anymore - we think everything is Ok then another fever comes along - he has not left the PICU for 2 weeks now.

A family meeting is schedule tomorrow so most of the physicians that are following Cedric will be there. I know that they want to place either a broviac or a port because placing an IV in him is becoming increasingly difficult - I sure hope we will finally be able to speak to his neurologist and not the resident or attending who has no real clue what the scarring to his left hemisphere of his brain really means.

Cedric is doing OK but I hate to see him struggle so much it never seems to end I honestly would give anything in the world for him to be healthy and I am not even saying without the trach, without the physical and mental delays - JUST HEALTHY.

Depressed is not the word that can actually describe what I feel - I am angry, sad, frustrated, helpless, ready to scream or to beat somebody... or cry myself dry. I just feel awful and trapped. I can't focus on anything... my house is falling apart ...my kitchen sink is clogged and I don't give a fudge.... My daughter yesterday was in tears telling to me I don't know what to do, mom is Cedric ever going to get better...

Once again thanks for listening

Michelle

debvec
04-15-2009, 07:56 AM
Oh Michelle, I wish there was something I could do. I know that feeling, Amanda was at UCLA for over 6 weeks and it just seemed like nothing went right, fevers all over the place, constant set backs, you just want to grab your baby and run screaming from the hospital, but then you wonder if they would survive without the professionals so you think better of it. It is like outside life is on a constant pause button in your bubble but everyone else is moving at the same speed...I will keep praying and hope that the meeting gets you some answers. As I said, my sister's little one has a port and it is a wonderful thing for her as it is easy access without the trauma of a stick every time. I don't know about the broviac. Oh, and just let that sink go!

Niff
04-15-2009, 08:11 AM
It does seem that when it rains, it pours. Big :hug: to you and your family. I hope something positive comes from the family meeting and little Cedric can get out of the hospital so he's less likely to catch nasty bugs.

KJKK8437
04-15-2009, 08:36 AM
Oh, Michelle -- I'm in tears reading this! What can I do? What do you need? I have a dear friend who is a plumber. Tell me your address, and I'll send him over immediately.

I just got my hands on some starbucks gift cards-- want to go grab a quick one? Will that help?

Want a hug? I know you and DD want to spend every moment you can with Cedric, and so I really don't want to do anything that takes up any of your time.

Do you want me to see if Alex's old nanny has a few hours to spend visiting Cedric when you can't be there? She has a funny schedule right now, and she is going to go to nursing school, so I think she might like the chance.

I don't know how often you can check/post, so I'll give you a call later.

:hug:

babyhugger
04-15-2009, 09:47 AM
Just sending lots of prayers up for your family right now! I'm so sorry Cedric is still struggling with this illness. :hug:

mylesmom
04-15-2009, 11:21 AM
We've been there done that. Hang in there. It all sucks sometimes doesn't it?

kirafaesmom
04-15-2009, 11:43 AM
I so wish I lived closer. You guys are in my thoughts and prayers every day. All I can say is take it one day at a time; if that's not do-able, the one minute, or one second at a time. What you are feeling is to be expected; I simply can't imagine the fear, frustration,anger and helplessness you and your daughter must feel on a daily basis.

lynn
04-15-2009, 11:53 AM
Hope you can get some answers from the family meeting, get some type of access for bloodwork/anitbiotics, and get out of there! Dont worry about your house- the mess (unfortunately) will still be there when you are able to get to it. :hug:

TommysMommy
04-15-2009, 11:59 AM
Sending prayers and hugs. I hope the meeting goes well and you get some answers.

JWorthington
04-15-2009, 12:22 PM
Oh Michelle, sending lots of love for you and Amy. Hope the meeting goes well and you come out of it with a plan. give Cedric a huge hug too:hug: :hug:

Julie x

saywhatyouwill
04-15-2009, 02:09 PM
big big hugs.

Hope
04-15-2009, 02:23 PM
Sending hugs via Karin to you and your daughter. I'm so sorry you're going through this yet again. Praying for healing and peace -
:hug: :hug: :hug:
Hope

My little figther
04-16-2009, 11:21 AM
They schedule the family meeting at 2:00 PM - my daughter will have to go alone since we don't know how long it will take, the hopsital is about an hour away... and somebody has to go an pick up Ethan at daycare.

I am a nervous wreck I don't know what to expect from this meeting - what game plan if any etc.... Cedric still has a fever

Michelle

JacobKaden
04-16-2009, 11:52 AM
Hang in there, Michelle. Sending hugs and prayers.:hug: :hug:

JWorthington
04-16-2009, 12:13 PM
:hug: :hug: :hug:

Julie x

Alethia
04-16-2009, 01:47 PM
There's nothing worse than seeing your baby so ill and yet to have no answers and not be able to do anything about it. No wonder you want to scream and shout out your frustration and anguish to the world! I think most of us have experienced that at some point or other with our kids, but you and your daughter do seem to have had way more than your fair share of this experience with Cedric over the past 2-3 years. :( I think you bear it with great fortitude and courage.

It's good that there is a multidisciplinary meeting with regards to Cedric. All the people involved with him need to get together to plan a way forward. It sounds like all the medical professionals feel equally perplexed as you do just now, though it won't affect them emotionally the way it does you. I hope so much that they can find a way to help ease his and your suffering. :luck: :hug:

kirafaesmom
04-16-2009, 05:16 PM
They schedule the family meeting at 2:00 PM - my daughter will have to go alone since we don't know how long it will take, the hopsital is about an hour away... and somebody has to go an pick up Ethan at daycare.

I am a nervous wreck I don't know what to expect from this meeting - what game plan if any etc.... Cedric still has a fever

Michelle
I'm praying like crazy Michelle; will be checking often for an update. Hang in there.....

alizesmom
04-16-2009, 10:20 PM
I'm coming in late on this but praying hard the meeting went well. To you I am sending all of the prayers and hugs that I can muster. To see Cedric get knocked down time after time has to be one of the greatest pains you will ever face. Just remember that you don't call him a fighter for nothing. :hug: :hug: Karen