Workshops/How To Work With Families

 

Mother:  Barb, age 30

Father:  Brad, age 30

Daughters:  Becky and Nina age 8 and 9

Son:  Brad, Jr. age 13 months

 

Mom talks: the 6^th floor has been home for three weeks now, with Brad, Jr. doing a little better.  He is off the respirator, but is having a little trouble trying to wean off the oxygen.  Dr. Smith is telling us that even if he has to go home with the oxygen, it’s better that we give him all the time he needs to recover from the virus.

Brad, Jr. was admitted with the RSV virus into the intensive care unit of the hospital.  We went through the life flight experience from Metro (laughing) and that was quite an experience.  My husband is a postal worker and he works two jobs, so he had to go back to work and tell his boss the situation, so he drove downtown, but I went in the helicopter, having never in my life flown in anything.

My parents came by in the middle of the night to stay with the girls.  They are incredible.  Anything they can do, they offered to do and I took them up on it.  I am so lucky and I know this isn’t the case most of the time in these situations, but I am a religious person and so are they and we just do for each other, whenever.  Brad, Jr. was incubated and put on immobilizing medication and then they told me it was actually paralyzing him.  Brad and I talked it over and we decided to have a talk with the doctors so they would realize his mobility was not so good to start with.

They understood that we were afraid he would lose what progress he had made in mobility skills, so they took him off of it and he went downhill fast.  Since I’m here all the time, I begged the doctors to put him back on the medication, because he would cough without stopping and get weaker and weaker and it was terrible to listen to and to watch.  I knew we would lose him, if he was not totally immobilized and kept on the respirator.  The reason is that there is no antibiotic that cures RSV.

My husband gets very quiet and upset and can’t talk about the prospect of losing him, but I am getting used to the thoughts about how one day we might lose him.

Brad, Jr. (call him Junior – we all do) was a 27-week-old preemie who inherited the herpes virus from me.  I have so much guilt about this, but it’s too late to do anything about the infection being passed on, and so I feel lucky that I can not go back to work, and that I can take care of Junior full time for now.  When Junior was about three months old, he had already been in the hospital for lung disease and they were saying that he probably was going to be blind.  He did not look at me, sucking was terrible, and he was receiving only occasional home visits from the early intervention nurse in our county.

The visiting nurse wanted me to get involved with an infant-family early intervention program in a local school for children with handicaps, but I couldn’t see leaving the house with him for any reason while he was so young.  I had my dad to go to the store for me, and the girls really needed me to be home with them and Junior, so I told her “no”.  She did, however, tell me about a child development specialist who makes home visits, and accepts whatever payment the family can afford, including in our case, nothing!

The nurse had heard through word of mouth from other agencies who had used her, including WIC, the rehabilitation hospital and the local intervention collaborative group in the county, that she was excellent at letting the family set the schedule and respecting our feelings and ways of doing things in our home.  I didn’t want a stranger telling me about my baby, even is she was an expert on infants with handicaps and other problems.

The first time Alice came to meet us, I felt very comfortable about her.  She knew people in the neighborhood and had a lot of knowledge about the services I might need eventually, but she didn’t push.  I ended up telling her the whole story of the herpes and the whole history of this early lack of response to us.  I told her how close we are as a couple and family, and with our parents being right in the neighborhood, how we can manage to do whatever it takes to help Junior and those people were right.

The home visitor specialist has been coming to the house every few weeks since Brad, Jr. was three months old.  We do playing things with a bag of toys she brings and leaves with us.  We do the mobility exercises for left side stiffness and undersensitivity to touch.  We practice different feeding techniques, ways to hold and stimulate Junior, things the girls and we can do to get him to sleep through the night and to become more aware.

Alice is a friend who cares about my son and I call her frequently between visits to check out various problems.  (away from Junior a few times to he has been doing so good?)  This is a terrible setback.  We had the boy laughing and cooing and doing a lot more reaching out for objects and toys.