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@lizzywiz: oh no worries! I understand. Positivity is crucial! I just know that sometimes I want dh to let me say I am not doing okay... even if everything is okay. It is tricky. Not like I want him or anyone to actually say, "It is NOT okay."
it is just hard!I am sorry she had a bad night. Poor little one. The procedures just kill me!
those are just the worst. Deep suction sounds terrible.
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@lizzywiz: bad night over here too. The steroids caught up to him. He slept maybe 4 hours, 3 of them on me. I slept about 2, 1 of which was from the kindness if the nursing staff who walked him around for me around 3 am so I could rest. He's in biopsy now.
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@Ms.Badger: I sent you some emails but not sure if you've received them? We've been admitted to the hospital far too many times, and I totally get you on how sucky being on NPO is, feeling judged and all the checks in the middle of the night creating havoc on sleep. LOs sleep had regressed so much after our last stay that she's been napping on us for the past two MONTHS when she would go down by herself without a hitch before.
When can he come off the prednisone? We had so many issues with that steroid. Hope his biopsy went well and that you all get some much needed rest soon.
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@lizzywiz: the nice thing about his disease is that we know what it is and there is support for that disease. I think it is harder when you are investigating. The medication takes up so much time i do get frustrated that I have to take care of our son when he is doing meds or up late because of his meds. Also that my son has to learn so early about all of those things. But he is an adult which means he can take a lot more control.
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Well, the good news is her o2 is 94 (it isn't unusual for to drop to low 80s when sick), the bad news is she developed a fever. We are back home now with, waiting to see which way she is going to go.
I had to call in for tomorrow because, regardless if we go back to the hospital, the chances of her being daycare ready are nil.
My work is getting pretty impatient and I can't blame them. I feel like this would be so much easier if we were rich!Anybody's day going better than mine?
Anybody else also wish they were rich? lol
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@lizzywiz: the o2 sat is good news! Have you taken any fmla? You don't have to take it all at once... I can imagine how difficult it is to deal with work on top of everything else!
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@Mrs. Lantern: I'm sorry. I should have emailed you back, just kinda got lost in the shuffle. They won't take him off prednisone until they have a new course of action after getting biopsy results tomorrow which means another long night I fear.
They have mentioned possibly doing a scan which they'd have to put him under for. I hate all this anesthesia! I hate a lot of things they do to him in the hospital. -
@lizzywiz: I'm so glad they sent you home. Stinks about work but being home is much better than being admitted. Do you have a social worker than can help with FMLA?
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@lizzywiz: glad you're home again and the o2's are better. Is she on a pulse ox monitor at home? I hated deep suctioning too.
@Ms.Badger: I hate anesthesia, I hate the morphine, I hate the PIC line, the heel pricks...
DS2 is actually doing quite well with his feeds restarting, and they are advancing him by 10ccs every 3 hours. Do any of you feel afraid to get optimistic when things are going well? I was in such a happiness stupor when this NEC crap started and I'm sort of afraid to be expecting/looking forward to no more problems.
@Mrs Green Grass: happy adjusted bday D! I saw his pic in another thread and he looks so big and grown up.
Are you guys interested in a support group, similar to the IF ones? I could start a thread...
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@beaker: I would be interested, although I have never been on a support thread so I am not sure if it works any differently.
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@lizzywiz: @beaker: We could create a forum just for threads like this, if you guys can think of a good name for it?
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@Greentea: @Ms.Badger: @Mrs Green Grass: @beaker: @brownie: name ideas, ladies?
@mrbee: If it is a whole forum it would be nice for it to be open to people dealing with any long term health issues of anyone in the family, not just LOs. Being a mama with,say, lupus, has to suck merrily and probably needs a venting space, too.
It isn't creative but all I can think of right now is something like: Chronic/ Long Term Health Issues
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@lizzywiz: @mrbee: perhaps "chronic illness & special needs" ? Not sure if "illness" is off putting.
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@mrbee: @lizzywiz: "Health Support"? No negative connotation (with that maybe?)
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@Greentea: I think there needs to be some kind of qualifier in there. Maybe long-term or serious health support?
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@beaker: @Greentea: @lizzywiz:
Was thinking about the names, and it's a bit tricky! Especially since the board name would ideally be relatively short... plus there's some overlap with the NICU board.
A few potential options to consider:
* We could call the board something like Chronic Care Support
* We could call the board Special Needs Support
* We could make a general Parenting Support, and then this could be one thread within there.
* We could rename NICU as Intensive Care Support?Let me know what you guys think!
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I agree with @beaker: there needs to be a qualifier. I might go nutty if it fills up with posts about run of the mill constipation or some thing
Also, the 'special needs' is a good idea.@Greentea: I was wondering about the negative connotation, too. Of course, that could be me trying to 'Pollyanna' it up.
You have a better idea of how the board roll, @mrbee: what do you think they would like? Something like:
Chronic illness & Special needs
or
Long term health concerns & special needs -
On a side note: my daughter is sleeping and I am worried because she sleeps more when her oxygen drops...I wish I could just be happy for the break. She is probably fine.
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@lizzywiz: The name can't be too long, so that it can fit into the pulldown! Any thoughts on trimming the forum name down a bit?
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@mrbee: oops, sorry, I didn't see your post before mine.
I like Chronic Care Support or Special Needs Support.I would like it to be a forum, rather than a thread. There is so much variance between NICU, asthma, and other illnesses/ developmental difference that I don't think could be contained in one thread.
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I think we should just have a thread titled "Chronic Health & Special Needs Support" (or just use this one). I don't think there needs to be a new forum since right now at least, I don't know if it would get a lot of use. (My reflux thread died a quick death.) But I do think Chronic Health and Special Needs are both very different things so I don't think you could choose just one as a forum label.
Just my two cents.
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@lizzywiz: I agree that it's much better to have a thread for each issue, but I'm not sure there is enough presence for each issue across the site right now to have it get much discussion...
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@Mrs Green Grass: I know I just said I would rather have a forum, but I am ok with a thread, too.
I am a sporadic poster, in part due to LOs health, so I definitely can't be counted on to keep a discussion alive!
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But I do think having a forum more specific than "Your LO's Health" would be good. Would "Chronic Health Issues" be all-encompassing enough?
@mrbee: I saw that you just broke out feeding and sleep...LO's health could be another one....then whatever new chronic forum could go underneath?
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But back to the support for this thread....
How is everyone today? LO has a doc appt this afternoon to discuss his vomiting and make sure his ear infection has cleared up.
For the PICU ladies: I walked to lunch everyday while I was in the NICU and tried to not go to the cafeteria....I usually went outside. It was a nice little break time and I got a small amount of exercise. Are your lo's able to get a decent amount of naptime without interruptions?
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@Mrs Green Grass: @lizzywiz: Ok just created a Chronic Health Support forum... we can always change the name later if you'd like!
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Thanks @mrbee: ... Could you move my NEC and baby beaker update threads there from the NICU boards?
@Mrs Green Grass: good luck with the appt.
DS2 is doing well. It's snowing here so I left him earlier than usual to get home before the roads get ridiculous. Did anyone else deal with terrible diaper rash in the hospital? I think his butt got used to not being pooped on while he had his ostomy bag and is now super irritated.
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@beaker: Ok moved a bunch of threads into the new forum!
http://boards.hellobee.com/board/chronic-health-supportFeel free to flag any ones that are in the wrong board, and I'll move it right away!!
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@mrbee: Thanks!
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I don't think my boys really qualify for this thread, but I wanted to just send you ladies some empathy. We battle weight gain (especially with Finn) and allergies and accompanying infections, but thankfully have put reflux to bed for the most part and are no longer on medicine for that. I sometimes struggle just with those things, so I can only imagine how you feel. Hope everyone's LOs have good days today.
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@mrbee: @beaker: I am so happy! (For the new forum). Now I can learn about what others are going through like @beaker: I didn't know what you were going through or where to find the threads before.
This forum is simultaneously breaking my heart. Hugs everyone!
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Would those of you facing physical health concerns like to be separate from mental health concern issues? I'd love to have a support group as well, but wonder somewhat if I'd not be out of place. I won't have my feelings hurt if I don't fit this particular group/board.
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@Ms.Badger: hope you two are doing okay today!
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@Mrs Green Grass: good luck with the Dr appt. Speaking of ears, they always check LO's to confirm there is no secondary infection outside of her lungs but yesterday the wax in one was impacted and blocking the view. They told me to put oil in it. Anybody know about this? I want to do whatever is best/ most effective because this is one of several treatments I have to hold her down for several times a day (suctioning, meds, now this) I want to make sure it is worth it!
@beaker: we ended up having to use different diapers than what the hospital provided (although the pampers they provided are good, I think). They irritated her butt somehow and that opened the door to sores, fungus and some weird alligator skin like rash. So, the original irritation was minor, but got insane after a while. Have no idea if that is helpful info to you. We used the 1 part cortisone, 1 part fungal cream, 1 part neopsorin, 1 part aquaphor for a week to clear everything up originally, now we use it as needed (rarely).
@Mrs. Blue: If it's chronic then I think you fit
IMHO, having less than typically healthy LOs adds a whole new component to life, regardless of the severity level of the issue.@Mrs. Twine: I don't feel the need to be separated for the same reason as above
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@Mrs. Twine: I think it's fine to keep them together, but that's why I was initially thinking "... & special needs." Mental health is still a health issue! You may recall that we're dealing with some neurological compromises as well.
@Mrs. Blue: I think if you feel that this is a helpful place for you, you're welcome
With DS1 we've only ever taken him to the doc for his well child physicals... As long as you're not at that level I don't think you'll catch any eye rolls here @Greentea: yeah, welcome to my big mess haha! Weird seeing them all together in the new forum.
@lizzywiz: ugh. Poor DD. How old is she again? Right now he's in pampers with this weird cement like diaper cream (that's supposed to stay for a whole day) with Vaseline on top that gets cleaned off. His poo is super runny which I'm sure isn't helping. Do you remember the name of the diapers you used? If it doesny clear up soon I may mix up some of that cream to try.
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Oh, and I just remembered the baby center equivalent board is "special needs and medically complex kids" but that's super long. I like the support angle of this name though.
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@Greentea: waiting on biopsy results. I'll update when I know anything
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@lizzywiz: yes on the alligator skin rash! He never gets that at home in Huggies natural. constant aquaphor clears it up for us
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@beaker: she is 20 months. We loved the hospital pampers and started using them at home but now we have to use chlorine free. Our favorite is Earth's Best.
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The results of the biopsy are not clear (do medical tests ever lead to clear conclusions?) They just know it's not simple rejection. They are leaning towards thinking its atypical rejection in which his body is mounting a specific antibody mediated attack on his new liver. The initial treatment is quite safe with minimal side effects so we start tomorrow morning. I'm not ready to think about the next step treatments yet, they sound scary.
The other possibility is a blockage of the bile ducts so they want a detailed MRI which seems easy except he'll have to be sedated, possibly intibated. I will not consent until I've talked to an anestheseologist plus with anesthesia comes npo, which everyone hates. So tomorrows going to be busy.
With all this I have a job interview on Thursday. Its for part time work that I'm really interested in and would be great for me but its hard for me to think of working with LB in the hospital.
Anyone else have a hard time talking to family and friends? I'm simply so jealous of all the good things going on in their lives and find it hard to be happy for them.
it is just hard!
those are just the worst. Deep suction sounds terrible.
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