2020

2020 is over. It was a difficult year for so many, us included, but not the worst we've lived through. 2004 was the worst one for us. I call it The Year From Hell. My mother caught pneumonia, and because of having COPD, she died. That summer Adam had 6 shunt surgeries in 5 weeks. We nearly lost him. The days spent in hospital were so very hard for him and for me. The pressure in his head was so bad that it caused damage to his brain and paralysis of his lower body and he could no longer walk. After the final hospital stay and surgery, he came home in a wheelchair. With a hospital bed. And terrible, unrelenting pain. He vomited all the time because the pressure in his head was so severe. There was no relief for him, and we were both exhausted.

Paul and I moved the living room furniture to make room for the hospital bed. Adam would lay there and watch "the goose movie", better known as "Fly Away Home". The music is beautiful and calming, as are the colors and theme. ( He won't watch it anymore; I think it reminds him...) I would often lay in bed with him; it would comfort and soothe him.

Adam spent a long time learning to walk again. The physical therapist who was coming to the house told me a few times that he didn't think Adam would be able to walk again, but I assured him that he would walk. And I prayed. A lot. Often. Frequently. Over and over. Without ceasing. And I stood in the faith that he would walk. It took a year.

This year Adam had two surgeries. We had a few trips to the ER and they were horrible.The corona virus was new and regulations hadn't been determined. With the first admit for surgery, they made me leave the hospital after he went to the OR. And they wouldn't let me back in. I was frantic and very angry. After many attempts and literally crying on the phone when the surgeon called to tell me Adam was out of surgery and ok, the Patient Advocates got involved and brought me back inside. ( I had been sitting outside in the cold in Adam's wheelchair because Paul dropped us off and went home. We had no idea they wouldn't allow me to stay.)The chief of security sought me out and apologized for what had happened. Someone told him that his team had escorted me out of the building, which wasn't true and I told him so. They just stonewalled me and told me to leave. He gave me his card and told me to have them contact him right away if anything like that ever happened again. I thanked him and he left. I sat away from everyone else and settled myself down. I got something to eat and drink from the Starbucks as I wasn't permitted in the cafeteria.

A while later they finally called for me to come to recovery to be with Adam. He was awake and upset and they couldn't understand him and didn't know how to help him. They had waited much too long to let me in. No one knew what to do because no visitors were allowed in. This is problematic for everyone because Adam can NOT EVER be left alone. He can't use a call button. He can't call out for help. He can't tell them what he needs, and if he tries, they can't understand him. They didn't have the staffing to sit with him and keep an eye on him. If he's left unsupervised for too long and his i.v. bothers him too much, he'll pull it out. He won't leave the nasal oxygen in place. He will fuss and cry out from pain and they'll ask him questions that he can't answer. They don't understand how to help him. I told them most of this when they kicked me out, but they didn't care. Until he was awake and upset and looking for me and calling for me. They finally called me in after an HOUR AND A HALF.

A few hours later, they were ready to bring us upstairs to his room. There is a new neurosurgery suite on the 9th floor. We stayed there last year the 3 times Adam had surgery. They assured me that there were no Covid cases on the floor. ( I found out later that all of the covid patients were on the 8th floor.) The room was huge and had a couch that pulled out to a bed. It was bright and had a wonderful view, as do most of the rooms at Stony Brook Hospital. All of that was lost on Adam. He fussed most of the night. He was so uncomfortable. I asked for better pain meds. It took a while, but they were finally ordered and given. The nursing staff was wonderful, as always. We appreciate them so much. 

I won't even go into the other issues that came up, but there are always more issues than Adam is admitted for in the last few years. These require more specialists, more tests, more patience. Mine ran out. The stress got to me almost as much as it got to him.

We went home the next day. Thank God! I needed recovery time almost as much as Adam did. Things were so stressful and remained that way after we got home because Adam's pain level was high, the oxycodone which they prescribe for him doesn't last long enough, and he can't take over the counter meds because of other health issues. My hair started falling out. Again, I might add. The same thing happened in 2019 after those surgeries.

I don't sound very thankful, but I actually am. Adam is alive because of the invention of the shunt. He would have died in infancy without the invention of broad spectrum i.v. antibiotics. I'm thankful for doctors and nurses and specialists and technicians and housekeeping staff and dietitians and certified nursing assistants and the t.v. people and the dietary aides who bring the food to the rooms and the elevator operators who bring Adam and me up and down to our room and to radiology and to the surgical floors and I'm thankful for security and police even though they completely irritated me this time.

God is good even when I'm super stressed and angry. He brought me through this and out of anger and depression. He brought Adam through another two surgeries, and He'll do it again.

God stops by even when I'm in a bad place. He calls to me and waits for me to respond. He calls and waits for me to answer. He calls and waits for me to sit still. He said He would never leave me or forsake me, and He always keeps His word.

Thank you for stopping by. Thanks for listening to my lament. I hope I haven't scared you off from visiting again. I hope you'll do so soon.