Sunday, May 13, 2012

Another Week

In my last blog entry, I described how Alex had begun having daily meltdowns during his second week of this third hospitalization at St. Anthony’s. This past week, he has continued to have meltdowns, especially in the morning. Last Sunday morning, one of the nurses called to tell us that he’d had a major outburst in which he had come after a staff member, who had to get a tetanus shot after Alex had scratched her. Because he had to be sedated with an injection and was placed in isolation in his room, the nurse recommended that we not come to visit him on Sunday afternoon, as we had planned. Upset that we couldn’t see Alex and that he was continuing to become agitated on a regular basis, Ed and I tried to distract our worries by going out to dinner with my parents, and we prayed Alex would be better the next day.

On Monday, I focused on trying to see what group home placements are currently available nearby. After making several calls to different agencies in the area, I was impressed with how kind and helpful I found the people who work with group homes to be. Although none of the group homes in our county have openings right now, I was pleased to find a few available placements in neighboring counties not far from us. However, we are still waiting for the state to determine Alex’s level of disability so that he can receive services. This waiting period is probably a blessing in disguise since Alex’s still unpredictable behavior necessitates his being in the hospital where they can monitor his behavior and medication safely.

Before our planned Monday evening visit, I called the hospital to see how Alex was doing since we had not heard anything from them after his Sunday morning meltdown. Apparently right before I called, he had a fit and came after two women staff members, pulling their hair. They gave him a shot to calm him and told us visiting him would not be a good idea. Once again, Ed and I were upset that Alex had gotten agitated and physically aggressive—which was the same pattern we had been dealing with at home for months—and disappointed that we couldn’t see him.

Tuesday was basically a repeat of Monday as Alex became agitated and needed a shot to calm him. Once again, the staff recommended that we not come to see him since he’d had a bad day, for fear of stirring him up with our visit.  Since we never see the nurse practitioner who oversees his medication, I decided to call her office the next day to set up an appointment to consult with her about Alex’s behavior. Her staff told me that she would contact Alex’s caseworker to set up a time to meet next week at the hospital to discuss our concerns. Later on Wednesday, I called the hospital, hoping and praying that Alex had finally had a good day after several days in a row of bad ones. The nurse told me that he was a little “feisty” but hadn’t required any extra sedative medications; we could “come on down.” When we arrived, Alex was lying in bed calmly. One of the techs told me that he had asked for a shower earlier. When she asked him if he wanted to wait until his dad came to visit in the evening to help him with a shower, he first said that he’d wait. A few minutes later, he decided that he wanted his shower earlier and asked her to help him. Apparently, he was very cooperative for her, and as she told me, “He never gives me a bit of trouble!”

On Thursday, he had another morning meltdown but calmed down with an injection. Amazingly, one of the male techs had not only helped him shower but had also convinced him to wash his hair, which Alex has resisted lately, probably due to sensory overload. During our evening visit, he was extremely drowsy, so we didn’t stay long. His behavior on Friday necessitated two injections, which meant that he was very sleepy by the time we arrived for our visit in the evening. While it was nice to see him calm, we still hated that he had been upset earlier, making injections necessary. One of the techs told me that Alex had said he’d had sixteen shots since he’d been there this time, so I guess he’s keeping track.  Before we left, we kissed Alex on the forehead, and he grinned a sleepy smile. I whispered to him that I loved him, and he replied with a drowsy yet clear, “Love you,” which made me cry.

Yesterday, Alex once again had a morning meltdown, but they tried to hold off giving him an injection, hoping that he could calm himself. As hard as he tried to pull himself together, he finally told them that he needed a shot and specifically asked for Ativan. Fortunately, by the time we arrived in the early afternoon, he was calm. When he saw Ed, he immediately asked him to help him shower, and he was cooperative as he washed and changed into clean clothes. As he sat on his bed and talked, Alex’s language seems to be improving, which the staff had mentioned to us, as well. Instead of simply replying with one-word answers, he seems to be expanding his speech. Perhaps the medications he is taking are helping with that; we just wish that his anxiety and agitation would improve, too.

Today, on Mother’s Day, I’m praying that Alex will have a calm day and that at least I’ll get to spend some time with my boy. While Ed and I wish that he could be home with us, we know that he must be in the hospital where he can get the treatment he needs and we can all be safe. In the meantime, we keep praying for healing so that Alex doesn’t have to deal with upset and anxiety that negatively impacts his behavior. We are very grateful to the hospital staff who have treated Alex with compassion, taking care of him when we could not. In addition, we are thankful for the outpouring of support, love, and prayers from family and friends who have reminded us that we’re not alone; their kind words, thoughtful e-mails, and encouraging cards have kept us going. Through all of these daily trials, we remember that God is in control, watching over us, and loving Alex even more than Ed and I do, making sure everything in the end will be all right.

“I know the One in whom I trust, and I am sure that He is able to guard what I have entrusted to Him until the day of His return.” II Timothy 1:12


K. C. said...

I wish I had something more inspiring to say, but please know I'm thinking about you all every day. And I'm praying to any and all higher powers who will listen for healing and peace. Love you!

Pam Byrne said...

Dear K.C.,
Your actions speak louder than any words ever could. Thanks for your support, encouragement and love.