Waiting

This week, Alex continued his hospitalization in the Behavioral Medicine Unit of St. Anthony Hospital. After two weeks of daily meltdowns, blood tests were run on Monday to check the levels of medication in his system as well as to make sure they were not adversely affecting his liver and kidney function. Fortunately, the various medicines intended to calm his anxiety and curb his impulsive and aggressive behavior show no signs of impacting his liver and kidneys negatively, as those results came back as normal. However, the tests revealed that he is metabolizing the drugs too rapidly so that they do not remain at the needed therapeutic levels to stabilize his mood and behavior. Considering that he eats large amounts of food daily while remaining thin, this discovery of a rapid metabolism did not surprise us. To address this issue, the nurse practitioner overseeing his medications increased the dosages this week. As with each change that has been made over the past couple of months, we always hope this will be the right combination and levels of medications Alex needs to make him better. Of course, we also know that time is needed to see the results of these changes.

One change the staff has noted this week is that Alex has become increasingly verbal. For the past several months, we had noticed regression in his language skills, as he reverted to speaking primarily in one or two words. Moreover, he usually needed prompting to speak at all, and unless he was agitated and yelling nonsense, he spoke in a whisper-level volume most of the time. This week, he has apparently been initiating questions as to when meals will be served and when Ed and I will be arriving for our daily visits. Considering that Alex has always been very time-oriented, these questions reflect his need to know when things will happen.  What has been unusual, though, is that Alex finally seems to have mastered using the correct point of view with pronouns, specifically not mixing up  you with I and me, which has confused him throughout his life. Instead of saying, “You want a shower,” when he means himself, he has been telling the staff, “I want a shower.” I don’t know what has cleared up this language problem, but this sudden understanding marks a huge step for his speech skills.

In addition, he is using language in ways that amuses the staff. One of my favorite psych techs, Michelle, who is wonderfully sweet and supportive, finds Alex entertaining and has been pleased that he’s finally talking to her. She told me that he was asking for cookies the other day, and she reminded him that he can’t eat cookies because they have wheat and milk in them, which he can’t have on his restricted diet. He agreed yet pleaded with her, “But I like cookies!” Another day as she was leaving, she said goodbye to Alex and let him know she’d see him the next day. He responded by telling her that he wouldn’t see her. When she asked him why, he cryptically said, “It’s a surprise,” which she thought was funny. Later this week, he was talking with his caseworker, Katie, who was going over a schedule with him apparently in a no-nonsense way. When she was done, Alex commented, “Katie means business!” Since we’ve always thought that Alex’s limited language has hindered his social skills, his willingness to ask for what he wants and make comments about what he notices marks improvement in his socialization as well as his speech.

To help Alex improve his self-care skills and make decisions regarding his free time, Katie has developed a program in which Alex makes choices about activities and receives rewards for good behaviors.  He can choose various activities he likes, including doing math worksheets, surfing the Internet on the computer, watching television, etc. However, he must also complete grooming tasks, such as showering, combing his hair, and brushing his teeth. Also, they are trying to teach him basic tasks, such as changing the sheets on his bed. Using charts and stickers, Alex can monitor his progress as he works toward various rewards. His ultimate reward is his favorite treat, homemade gluten-free and dairy-free cake that she asked me to bring from home. Although I would have been willing to bring various baked goods that he can eat on his diet, the unit is very strict about not allowing food brought onto the floor. Once Katie had secured permission to allow home-baked cake as a reward for Alex, I was able to bring it to him yesterday, and he happily devoured it. We are all hopeful that having cake as a reward will help stop him from engaging in any negative behaviors that he can control.

Essentially, at this point we are waiting for his behavior to stabilize as well as for the state bureau of developmental delays to approve our request for residential services. Since I’m not good at waiting, this has been a test of my patience as well as my faith. Thankfully, we know that Alex is receiving excellent care in a setting where his behavior can be monitored closely and addressed appropriately. We are also grateful for the continued support of family and friends whose encouragement and prayers remind us that God has a good plan for our lives; we simply need to wait, trust, and hope.

“Yet those who wait for the Lord will gain new strength; they will mount up with wings like eagles. They will run and not get tired. They will walk and not become weary.” Isaiah 40:31

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

Challenges

This week has been a challenging one for us. Alex is still in the hospital as we wait for news of a residential placement for him. Although he had been doing well during this third hospitalization, this week he began having meltdowns, which reminded us why he needs to be there, where they have resources to help him, instead of at home. On Tuesday morning, the hospital called to tell us that he had awakened agitated and aggressive, so they needed to give him a sedative shot to calm him. Later in the day, he became edgy again, and they recommended that we forgo our daily visit, thinking that might stir him up again.

The next morning, they called early in the morning to tell us that he had again awakened upset and needing a shot to sedate him. Since we didn’t hear from the hospital in the afternoon, we assumed that he had been all right after that. Once we arrived at the hospital in the evening, they apologetically told us that someone should have called and told us not to come. A later meltdown had become so aggressive that they needed to put him in four-point restraints for a while so that he couldn’t hurt anyone or himself. In addition, they had to give him a combination sedative of Ativan, Haldol, and Benadryl to ease his anxiety. Also, a staff member stayed with him constantly, monitoring his behavior.

On Thursday, he continued his morning meltdown pattern and again needed medication to calm him. However, the nurse on duty that evening felt that we could come visit him because he had been fairly calm most of the day. In fact, earlier in the day, he had been able to express his frustrations verbally to his caseworker, telling her he needed crayons “to communicate” and that he didn’t like his “food choices,” requesting “more fruit,” specifically “grapes and strawberries.” When we went to visit him, he was so drowsy from the medication that he fell sound asleep shortly after we arrived. At least we were able to see him calm, which was reassuring.

Friday morning brought yet another meltdown and more medication. When we went to see him, he was resting in bed, awake yet drowsy. As Ed tried talking to him, Alex became more agitated and swatted at him a couple of times. Not wanting to make him upset, we cut our visit short and just let him rest, hoping for the next day would be better.

Yesterday, we had not heard from the hospital, so we were praying that no news was good news. Unfortunately, when we arrived, a nurse rather bluntly informed us that he had yet another morning meltdown in which security had been called when he went after a staff member, and he had been given a sedative shot. Fortunately, no one had been hurt, and the staff member who had received his wrath assured me that she was all right. Moreover, the compassion and kindness she showed for Alex eased the feelings of upset we felt for what had happened. Once again, Alex was drowsy from the sedatives, and after Ed talked with him for a while, he became agitated, swatting at him. For fear of upsetting him more, we decided to leave.  We watched outside his door, as he settled down and seemed to be falling asleep.

While these daily meltdowns are heartbreaking because we hate that Alex is so agitated, we’re thankful that he’s at the hospital where they are able to handle his behavior better than we are at home. Although we have no idea what is causing him to be anxious on a regular basis, we have seen this pattern at home where he is calm for several days followed by being regularly upset for several days. His caseworker thinks that he is tired of being at the hospital and wants to come home, but having seen him display the same behaviors at home, Ed and I tend to disagree with this reasoning. Also, these behaviors are precisely and sadly the reason why he can’t come home; his aggression is too dangerous for Ed and me to handle by ourselves.

Throughout the trials of this week, we have been blessed by the support of family and friends who have expressed their concerns and support. We are thankful for the kind words, notes, and e-mails we have received, and we appreciate all the prayers being said for our family. After being Alex’s only caretakers for more than twenty years, Ed and I have had to realize that we need help in providing for his needs, and right now all we can really do for Alex is to love him unconditionally—as we always have—and pray for him, which we have done throughout his life but now with an increased fervor during this period that requires greater faith than ever.  We face an uncertain future, not knowing where and when Alex will be placed and hoping that these meltdowns will cease so that he can get better. As we face our fears with faith, we take comfort in knowing that God loves Alex even more than we do and holds all three of us in the palm of His hand. Nonetheless, I ask for your prayers which lift us and sustain us as we wait to see the hope and future promised in Jeremiah 29:11.

“Don’t be afraid, for I am with you. Don’t be discouraged, for I am your God. I will strengthen and help you. I will hold you up with my victorious right hand.” Isaiah 41:10