So Much Work

Our first month home was incredibly exhausting. We were in the process of selling the house we lived in so there was lots of packing and cleaning to do. We were also buying a larger house about 60 miles away. This demanded papers to be signed, furniture to be picked out and a lot of driving back and forth. Then there was catching up for lost time with our son and Justice’s medical care that was now totally our responsibility.

The thing about hospitals is, they run 24 hours a day and the staff rotates caring for you. If you need medicine, they call down to the pharmacy. The pharmacy ships it up to your room and the dose is started pretty much as soon as it arrives. If your doctor decides to start another med a couple hours later, it too is ordered, shipped and started with little thought to the schedule. They are most concerned with whether the meds conflict with each other rather the frequency of attention one would have to devote to this kind of schedule.

Justice's schedule leaving the hospital was also based on 24 hour a day care by multiple people. The problem was, my husband and I were the only “people” and he had to go to work. She had many meds to take, most 2 -3 times a day, all scheduled for different times. This meant I was giving medicine usually 12 or more different times in 24 hours, each medicine needing shaken and measured out each time. We were also trying to teach her how to eat orally for she did not know how to suck or swallow. We would try for 30 minutes every 2 hours, of her waking hours. After failing an oral feeding session, we would tube feed her for 1 hour. The tube feeding happened every 2 hours 24 hours a day. In-between tube feedings I would wash and sterilize the feeding tube, supplies, and wash her clothes and bedding due to her vomiting. Then there were doctor’s appointments to go to, supplies to order, and visitors to attend too.

I was amazed how “on my own” I was once we left the hospital. There, when I asked a question, I usually got an answer even if sometimes it was a bunch of fluff. They at least knew most of it and my child, in no way, seemed like a new case to them. They always made me feel like they where my teachers, my leaders and the one I would turn to for answers. Outside the hospital, that was a different story.

I viewed our first home health nurse as a God send. I was so excited for her to come. I had everything ready. Cy and Justice had bathes. The house was clean. I think I even did my hair that day. I felt that help was finally arriving. Someone I could talk to, who spoke in my new language. It was going to be like Christmas.

When she finally arrived, we went over Justice’s medical history, which for her being about a month old was rather lengthy. She weighed Justice and took her vital signs. I did notice she seemed a little uneasy but I thought, maybe she was having a bad day. I tried my best to befriend her. I wanted her to love my child so. Nevertheless, in the end she told me she would be back next week. This was very disappointing to me. However, what could I do? Someone stopping by to help sometime was better than never at all.

The next week she came back with another nurse. They again took Justice’s vitals and then told me they were not going to be returning. They did not feel comfortable with her or doing her care. They said I knew more about her and I had everything under control. They had never worked with a child this bad before and I was handling it better than they would.

My only regret is I did not say anything about the situation at the time. I just kept on stepping up to the plate and taking care of things. I was too young to know when I should complain. I was exhausted! They should have seen that and if they could not, they should, as professional health care providers, assumed no person was capable of safely caring for anyone under these circumstances. At the very least they should have looked at her meds and feeding schedule and seen what could have been combine so I wasn’t getting up every 15-20 min. to administer care. They should have seen a young mother and asked her what her needs were and if she did not know help her figure it out. I regret how I handled the situation because it did not help anyone else. I was able to continue but I can see how someone might not be. Even I, who they said was doing great, had lost 50 lbs. of pregnancy weight in 2 months. I am very thankful for my strength but mostly for my wonderful husband and the family and friends who helped with everything from Cy to mowing our lawn. I know without this, I could not have been as strong as I was. I would have truly needed these nurses. I wish all support staff, whether it be a doctor, nurse, social worker, clergy, etc…, recognize how important they are. It is not always about the actually job they are being paid to do, sometimes, it is just knowing they are there.