Homehealth care

[2sickkids]

We did a pre surgery consult for g-tube. The surg said there was no way he would do surgery on my baby. Now we have home nursing care coming 3 times a week. Plus OT and PT coming 2 times a week. I know my baby really needs all of this but I am afraid all the people will bring extra germs into the house. And it makes me feel like a failure cause no matter what I do he just does not gain. Have any of you had home health? Did it help? Everyone keeps telling me I am doing great I just don't feel I can do enough. I think I may have a super mom complex. The boys doctors told my I don't look well and should take some time to relax and take care of myself.

 

[anonymous]

I think the kids are much less likely to get exposed to germs with the specialist coming to your house as opposed to you going to a clinic or a hospital to do the therapy, etc.
I would not feel bad whatsoever asking them to wash hands and put gloves on. You could even hang a sign up asking them to please wash hands and use gloves if you think you'd be uncomfortable telling them. You have to be the advocate for the kids AND for yourself.
You need to take time to take care of yourself too. You're not going to be much help to the kids when you're down yourself. I would ask your husband to give you a break if he isn't already and also, are there parents or in-laws that could relieve you once in awhile?
Did you call a doctor regarding the exhaustion? and blood? You should, and soon.
Do you have CF too? I wondered if you puked up blood from your lungs or from your stomach.
Take care of yourself and always feel free to come here for support, etc.<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[thefrogprincess]

I totally agree with the last post but just wanted to say hang in there. You need to listen to the doc about taking some time out. Why is it that the surgeon wouldn't operate? Maybe you should get another opinion if the baby isn't gaining. Good luck.

 

[anonymous]

If surgery isn't an option right now - what about a NG tube? A temporary tube that goes down the nose into the stomach could help add on some weight. Why is your baby not a candidate for surgery? And I don't understand the OT/PT connection - how will they help with the weight issues? Does your child have a diagnoses other than CF?

 

[2sickkids]

The surgeon said no cause my baby has liver disease MRSA and was way to righ of a risk right now. He has had problems with one lung since he was born. He hasn't gained since he was 6wks old. He is 8mo now. We have a ng tube doing night feeds now. Had it placed before but they had us take it out. OP/PT because he is not doing anything he should. We think it is from his weight problems. The nurse that came out told me she didn't know how I had my house so clean with 2 CF'ers . She kinda laughed when I told her I don't sleep.She commented on the fact that I have gloves in the kitchen and bathroom. As well as hand sanitizer in every room. She said my house was pretty much like a hospital. It is just us and the boys we don't have any family help. I don't have Cf just pretty much everything else. I' am getting back to seeing the doctors regularly haven't been for the last few months because the baby has been so sick. Kept having conflicting appointments and would go the the kids app instead of mine. I am trying to figure out how to keep all the appointments from getting double up. Because it's not good when I take my sons to their dr app and they try to do a work up on me as well.