Thanks for more guilt!

[crohnsinct]

So haven't posted in a while but O is still feeling great...looks great too! Only problem is keeps bleeding so we keep playing with prednisone level until Remi can work on it's own. Also, weight gain leveled off and we are still 15 pounds away from goal weight. Next GI appt is 4/12. We'll see what GI has to say...EN?

So for my Monday check in with GI doc I mention O feels great but has this lump in neck. They ask me to take her to ped. I do and during appt ped notices I am ill. I have been sick since last Thursday. Thought it was allergies but just gets worse and worse until today I feel and probably look like the walking dead. Ped asks me whats wrong with me and I say IDK could it be flu? To which I get scolded for not getting seen sooner. If I thought it could be flu I should have known better with an immune compromised child and been seen right away and now too late for Tamiflu..blah, blah, blah. O has swollen glands, no strep and probably just viral and probably caught it from me. Bring on the guilt!

I mean really? Who runs to the doc the first 48 hours they are sick? No moms with three kids that I know. It's not like I am not trying to help my high school seniors finalize her college choice or my learning disabled third grader learn to read and handle her precocious puberty and vitaligo, not to mention taking care of my crohnie and diabetic hubby...oh yeah and crazy two dogs! I know I am preaching to the choir here. As much as I understand why I haven't gone I am now in tears over being a bad mom to my crohnie and not taking care of myself and possibly infecting her!

Well at least I was on that lump!

Tomorrow is another day.

 

[OnlytheStronghaveCrohn's]

I see you wrote this a while ago and I do hope you are feeling better. The fact that you rushed your daughter to the doctor says to me that you do put your children first and probably brushed your symptoms off as "nothing to worry about". I'm sure you do more than your share of worrying and caretaking for your family and forget to apply that to yourself. Also doctors can be completely insensitive and cold at times, he could've have a crappy day and needed someone to take it out on.

 

[Mom2oneboy]

Awww, you poor thing. You are a wonderful mother...don't doubt yourself on that!! (((Hugs)))) and I hope you both feel better soon.

Shelley

 

[crohnsinct]

Thank-you both. I took a nice 2 1/2 hour nap and am feeling better (emotionally anyway). Too bad O came home from school with even more blood and mucous Although that doesn't scare me anymore...not compared to what everyone else is dealing with.

Shelley - are you and your boy home now?

 

[Tesscorm]

Crohnsinct,

I'm glad you're feeling better and you have no reason to feel guilty! :ghug: OMG, you have your hands full and you are still completely on top of what's going on with O!

We can't win with doctors - if we call them too soon, we're overreacting; call too late and we're careless! WTH!! :mad2:

You're doing a great job! Don't let anyone tell you otherwise!:rosette2:

 

[DustyKat]

Oh man Mum, that sucks big time...:hug:

Good lord! What Mother doesn't put themselves at the end of the pecking order when it comes to their family! BUT there is not a hope in hell that you have ever put your daughter at risk so the doc can go root a boot! Bloody nerve...grrrrrrrrrrrrr.
I know how you feel though as I have been in a similar situation myself, a case of constant innuendo that I had been sitting on my son's symptoms when he should have been in hospital. If I was told once I was told a hundred times that he was a very sick boy...you know, with that look and "tone" of voice...idiots. :voodoo:

Don't ever have them second guessing yourself or feeling inadequate Mum because nothing is further from the truth. You are doing a fab job now just as you always have and will. Major kudos to you for being able to manage all that you do!

Well done Mum!
Dusty. xxx

 

[Twiggy930]

...so the doc can go root a boot! Bloody nerve...grrrrrrrrrrrrr.

This line made my day! :ylol: Thanks Dusty!

I totally agree!

 

[DustyKat]

My pleasure...:ybiggrin:

 

[crohnsinct]

Ah! Feeling much better today. Physically and emotionally.

Now. Hate to be a whiner given everything everyone else is going through BUT my doc is away and I just have to ask...how much bleeding do you really worry about? O has been up and down on pred now for weeks...bleeding stops...bleeding starts. I email nurse every Monday and Friday the blow by blows and get the new dosages. I am beginning to bore even myself! O feels great and looks great. No stomach pains..no d..do I need to worry about some blood here and there? Something tells me not worry but maybe be concerned because this is how it all started back in April and blood just isn't normal...but she looks and feels so good...Is it possible the Remi is working and that she will have to just get used to a bit of blood? I hate contacting the nurse so often...even though she has been great. Just wondering when I will overstay my welcome

 

[tots]

What mom has time to even slow down and evaluate how they are feeling? That's probably why I ended up in the hosp last month.

The bottom line- you do what you can do! Something will always fall through the cracks-that's life. When you know it- you can understand it- then you can accept it a little better!

Keep plugging away! :medal1:

Lauren

 

[DustyKat]

Hmmm, I'm not the best one to be answering this as my kids aren't bleeders and they haven't been on Remicade but I will give my two cents worth. :wink:...

If it were one of mine and outwardly they were powering along then provided the blood loss wasn't worse than in the past or they haven't developed new symptoms then I would watch, document and contact twice weekly as you do now. But if the bleeding became heavier and/or you were uneasy about it or anything then I would ring. Your peace of mind is of the utmost importance.

Do you take O's observations...blood pressure, pulse, temperature?
Might be just me but I always found doing this a couple of times a day when Matt was having issues very reassuring and often gave me clues as to when to contact the GP.

Dusty. xxx

 

[crohnsinct]

Just temperature as that is what they asked me to stay on top of. Never thought of blood pressure or pulse...LMAO she had a sleep over the other night and I heard her explaining to the girl why her mom had to follow in the bathroom after she went.