How to care for sick big kid?

[cjanelles]

Not sure where to put this...but I figure I can start here...

My little baby girl is almost 5 week old. My other daughter is 10 yrs old, and she has Crohn's disease, plus some other gastrointestinal problems that cause her quite a bit of problems.

When she was first diagnosed with Croshn's back in Sept 2005, she was my youngest and the only child I had at home (my 11 yr old son lived a couple of hours away with their dad). She was admitted to the hospital for a week, and I stayed with her the entire time. I didn't come home once. I believe it was totally necessary to be there with her because she was scared and uncomfortable (sometimes in pain) and just a little thing.

In the last 6-8 months, she has developed a new symptom (not Crohn's related, it seems)...throwing up with no real explanation...It was happening about once a month and I thought perhaps it was hormonal, maybe a pre-pubescent thing. But in the last month, it has increased, and now she has had three episodes of vomitting with no visible cause in the last week. She doesn't feel sick or crummy. No fever. No food that triggers it. Just vomitting.

So, tonight it hit her while I was trying to nurse the baby and get her to bed. I handed the baby off to my DH and tended to my daughter. But the baby was having none of it, and ultimately, I had to run into the kitchen to fix her her first bottle of breastmilk so DH could feed her while I took care of DD1.

All of this has me worried about how I'm supposed to handle my family if my DD1 happens to be admitted to the hospital again.

She has an appointment with her specialist on Thursday, and I'm willing to bet that he's going to say she has to have her gall bladder removed. I don't know if he's going to want to admit her to the hospital as well...but I just don't know how I'm supposed to manage if she does. My DH doesn't have any more vacation time, so any medical leave will be unpaid and we simply cannot afford that. I cannot stand the idea of leaving my DD1 in the hospital alone for long periods of time, yet I can't be bringing a new baby into the hospital for all of us to camp out.

My sister says we'll all just have to work it out if Sara has to go back in the hospital, everyone taking turns staying with her and keeping the baby so I can go up there and be with her, too.

I'm just really worried about how I'm going to take care of them both...and it's totally stressing me out...and that's not good for anyone either.

[Jasmyn's Mum]

Sorry you are going through this, Mama. Call in any support that is available to you. It's great that your sister said that to you. Call on family, friends, whoever can help. You can do this. As Mothers, we do whatever it takes

[alegna]

I'd take the baby and camp out at the hospital if need be. Children's hospitals should be ready for such things.



-Angela

[cjanelles]

Originally Posted by alegna

I'd take the baby and camp out at the hospital if need be. Children's hospitals should be ready for such things.



-Angela

Unfortunately, it's not a children's hospital. It's just the regular hospital with a children's floor.

Double unfortunately, we live in a mid-sized town in the south, so they're not "prepared" for anything that doesn't ahere to strict "good ol' boy" doctrine. Of course, I'm prepared to fight for what I feel I need to do in the best interests of ALL of my kids, but I just don't look forward to that...and also, I'm a bit concerned with exposing the baby to the hospital long-term. You don't think that it presents a health risk for her since she's so young?

Geez, I hope it doesn't come down to this...

[lolar2]

I have Crohn's disease and know others with it, and the vomiting thing CAN be related to it.

HOWEVER, I've had it since I was nine and been hospitalized all of once for it. So she may not be admitted for a while yet.

If I were you I'd look into finding another, children's hospital, if your insurance will cover it.

[cjanelles]

Originally Posted by lolar2

I have Crohn's disease and know others with it, and the vomiting thing CAN be related to it.

HOWEVER, I've had it since I was nine and been hospitalized all of once for it. So she may not be admitted for a while yet.

If I were you I'd look into finding another, children's hospital, if your insurance will cover it.

She's already been hospitalized once, for a week, shortly after she was diagnosed (almost 2 yrs ago).

The reason I'm fearing another hospital encounter is because I think she's going to have to have her gall bladder out.

Her pediatrician (well, two in the same practice) both said the vomitting wasn't a symptom related to her Crohn's which is why I said that...I think she has some other intestonal/digestive-system problems that are not caused by Crohn's but maybe complicated or compounded by it...

We have another appointment with the ped GI on Thursday, so hopefully we'll get her sorted out. Bless her heart, she's still throwing up (intermittently) and it's been 8 hours.

[alegna]

The hospital is not ideal for an infant of course. But it would be my choice in this situation. I would not be comfortable being away from an infant that young for extended periods. And I would NEVER leave a child unattended in a hospital at all. So it would seem like the only real option.



Hope she feels better soon.

-Angela

[annettemarie]

I'm going to bump this over to the general "parenting issues" forum since it involves the whole family. Good luck, mama!

[incorrigible]

Her friends should be out of school for summer right? Maybe you can talk to her friends parents about the situation and schedule for some friends to take turns visiting her and keeping her company too? I don't know if her friends and their families would be comfortable with that, but I know if it were my eldest his friends and their parents would be more than happy to visit him in the hospital. They've always been incredibly supportive with his medical issues...in fact most would be disappointed if I didn't let them know he was in because they would want to visit him and cheer him up and help how they could.

Do you attend a church or even another kind of group like scouts or 4h? You could talk to the leadership about your problems and ask them to ask for volunteers to stay with your daughter during the day. If you pump a bit (a pain I know) you could stay with her at night and leave the baby w your dh. Alternatively, he could stay with your daughter at night and you could stay with her in the day (baby and all).

I wouldn't worry too much about having the baby in a hospital. They spend like their first couple days, at their most vulnerable, in one...you know? Just ask the head nurse or doctor about possibly contagious patients to avoid. Chances are anyone that's a real risk is going to be pretty isolated anyway.

[mommymonkey]

hugs mama

If your dd needs to stay overnight then you and baby go with her. I know it's not a perfect solution. However, both need you.

Crohn's is a life long disease. Your oldest will continue to need you and you're gonna have to find a balance for your family. I was the sick child in my family. And there where moments of resentment between my sister and me. But it was never something we couldn't work out.

And, you need to learn everything about your dd's disease. As a fellow IBDer I throw up when I have a cold. I throw up when I didn't get 8 hours of sleep. I throw up when I eat certain foods. Your dd will need to pay attention and learn her triggers. Is she on acid reflux medicine? When I was diagnosed in my teens, my pediatrician was pretty ignorant about my disease. There are some really good resources on the web and I encourage you to find them. If you want you can PM me.

[Alkenny]

If you have supportive family, I would take advantage of it as much as you possibly can. I've never had to leave my baby that young, but you do what you have to do. Sorry, no real advice, but

[Ruthla]

[jillmamma]

Originally Posted by alegna

The hospital is not ideal for an infant of course. But it would be my choice in this situation. I would not be comfortable being away from an infant that young for extended periods. And I would NEVER leave a child unattended in a hospital at all. So it would seem like the only real option.



Hope she feels better soon.

-Angela

:

I would keep a sling handy so you can hold your little one and still be close to your older one. I hope your big girl can get healthy again very soon. That must be hard for your family.

[mamaverdi]

You might try posting in the Special Needs Forum. There are a lot of mamas of more than one child who have medically complicated kids too.

So, I would see what can be arranged with bringing the baby with you by contacting the patient advocate at the hospital. Can you arrange to be at a Children's hospital? Is there not one close by?

Also, have you gotten a second opinion about having her gall bladder out? We always get second opinions before surgeries here.

[Strong Mama]

cyclic vomiting syndrome
http://www.cvsaonline.org/
sounds like what your dd is experiencing. I am so sorry mama. I had it when i was 10. It was terrible.

[cjanelles]

Thank you everyone, for your suggestions.

Thanks Transitions for the link, I'm checking it out.

We had her appt today and the doctor has ordered lots of tests, including labs, upper-gi xrays, abdominal ultrasound and a test for Celiac disease.

He said he thought she might have something called Abdominal Migraines...I've never heard of them, but she's being tested for that, too.

He is checking the gall bladder, but hasn't said for sure it is the problem.

So, for right now, I'm just sort of jumping the gun regarding the whole hospital thing...although, I call it "preparing myself" because I am sure there will come a time in the future where DD may have to be hospitalized and I'll be better prepared for having posted here.

I do have a sling that I keep my baby in whenever we're not at home, so it would definitely be going with us if we had to stay at the hospital.

As for children's hospitals, the nearest is 2 hours away, so I don't think that would be an option unless she were really sick and in need of more specialized care.

Thanks again for all of the support and suggestions!! Ya'll rock.

[Strong Mama]

Abdominal Migraines

that IS cyclic vomiting syndrome!