Pediatric War(d) is Hell

For the first 2-3 weeks that Dylan came home with us, he seemed to be doing okay. He was eating an appropriate amount. He was sleeping well. He was very lethargic, but that was due to his hypotonia (loose floppy muscles).

Then he suddenly stopped eating. Melissa was struggling to feed him even an ounce of formula. Then one day while I was at work, Melissa called me to tell me that Dylan wasn't eating at all, he was incredibly weak and she was really worried and wanted to take him to the hospital. I told her to go ahead and that I would meet her there.

I remember how wonderful the staff and doctors were in the NICU (Neo-Natal Intensive Care Unit). They stayed with Dylan round the clock. The were incredibly patient with us and did everything they could to make the experience as easy as possible on us. I was slightly comforted by the fact that our son would be seen by the same people who had already dealt with him.

What a shock I was in for.

The hospitals policy was that once your child left the hospital, they could not be readmitted into the NICU. Only newborns were allowed in the NICU. They told us that Dylan had to be brought to the PICU (Pediatric Intensive Care Unit). What a difference between the two wards.

The PICU was a large open room with beds lining the walls. There were only 2 patients in there when we came in. Dylan and a 15 year old boy who was expected to die within a day. Imagine the shock we experienced as we sat there worried about Dylan watching this other boy dying.

This was the first time I imagined what it would be like watching my son die, having to plan his funeral, burying him. It was a terrifying moment. That horrible thought of watching my son die and imagining what his funeral would be like resurfaces whenever we find out about a new medical problem.

We could go home at night from the NICU, leaving Dylan alone for even a minute was not an option in the PICU. The staff there simply did not give a damn. They were too busy gossiping amongst each other to bother looking after our son. That situation is another reason that I am grateful to be a man and not a woman. I hate hospitals. The idea of having to spend a night in one skeeved me out to no end. My wife though immediately stated that she would be spending the nights with him while he was in the hospital. Though I did not tell her, I was incredibly relieved. I would be with them as much as possible, but I desperately did not want to sleep in the hospital on the disgusting things they call parent beds (Chairs that fold flat).

Dylan was getting intravenous fluids and his condition was not worsening so the next day we were transferred to the Pediatric ward. Though I was incredibly happy to see Dylan leave the PICU as the doctors did not think his condition was life threatening, the pediatric ward made the PICU look like heaven. The rooms were dank and dirty. The paint was peeling. The bathrooms smelled horribly. The staff was downright rude to us. The doctors were nice people, but we rarely saw them. The nurses and other staff made it a horrible experience.

I am grateful that Dylan was incapable of realizing what was happening to him there. I cannot imagine what it must be like for a child who is aware of his/her surroundings to have to stay in such a horrible pediatric ward. My wife and I have since then tried to help the Joseph Maffeo Foundation with their fundraising efforts as one of their goals is the physical rehabilitation of the pediatric ward. A sick child should not have to be in that type of environment.

After 5 days of IV fluid, Dylan had regained enough strength to be able to feed himself. We were able to take him home again. I have never been so ecstatic to leave a place.

Unfortunately, it would not be the last time Dylan went to a hospital...