The Struggle is Real

Thank you to everyone for sending thoughts and prayers to Travis and our family. Travis spent eleven days in the hospital. He is home now and is currently doing better.

The hospital stay was difficult for Travis. When he was in the ER he wasn’t given his medications. Honestly, a hospital is the last place that I would expect that to happen. Travis spent 30 hours in the ER (closet) room that I described in my blog last week. He was transported to the psychiatric hospital late the second day. It wasn’t until the next day (day three) that a nurse from the psychiatric hospital called me to find out what medications he takes. Then she had to call Travis’s pharmacy to confirm medications and doses. So he missed two full days of his medications.

Our concern was that we needed help getting Travis stabilized, yet he wasn’t receiving his medications. We felt like this was not going to help him to get better.

By this time Travis had also been without nicotine for two days. He called me early the first morning in Colorado Springs. He was extremely agitated. He couldn’t wear his shorts because they had a string attached to the elastic waist. They were an older pair of shorts, but he refused to let them cut the string off. He was mad because they would not allow him to smoke his cigarettes because the pack was open. They only allow non-opened brand new packs. At breakfast they would not allow him to use syrup on the waffles they were serving and they wouldn’t allow him to drink chocolate milk.

Patients are only allowed to smoke two cigarettes, four times a day. After each meal and before bedtime. Luckily for him, I had difficulty sleeping at the hotel, so I got up and showered and dressed at 4:30am. I found my way to a store to get him cigarettes and then found my way to the hospital. The hospital door was locked, I had to be buzzed in. I then filled out a form indicating that I was leaving Travis the cigarettes. I shared with the receptionist that Travis was desperate to have them and asked her if they could be brought to him right away.

While in the reception area filling out the form I read signs that said patients can have three days of clothes. Next I found a Walmart to buy Travis some clothes. I was unable to find a single pair of elastic shorts, sweatpants or pajama pants that did not have a string to tie. I ended up buying him three brand new pairs of sweatpants and cut the strings off in my car with my pocket knife. I also bought three T-shirts and a package of underwear. I opened them and counted out three pairs.

This is why I wrote last week that I wish the crisis team had let us know that we should stop by his place to get his medications and some clothes before we drive two hours away. We were too worried to be thinking straight and didn’t know what to expect.

I drove back to the hospital to drop off the clothes. At this point I have no idea what the plan is, but I decided it would be easier to leave everything I bought than making multiple trips, especially if they are not allowing visitors.

When the nurse called that morning about his medications, I told her he was upset about breakfast. I shared that he had Type II diabetes, not Type I. I told her that he lives on his own and eats what he wants, and he was going to go back to eating that way when he got home. She agreed and said that she would fix his meal card. The nurse told me he was also upset about his cigarettes. I told her that I had dropped some off already because he said he needed them by the end of breakfast. She said they hadn’t been delivered and she better go find them.

I must have been asking a lot of questions, because the nurse told me that the doctors make their rounds in the mornings and their phone calls in the afternoons. She told me that the doctor would be able to answer all of my questions when they called that afternoon.

Later that afternoon I received a call from a therapist that was working with Travis. I told her that the nurse had said the doctor would call that afternoon, but I hadn’t heard anything yet. I told her that I was trying to determine if I needed to stay another night in the hotel. The therapist said the doctors were usually gone by this time of day and that the nurse shouldn’t have told me to expect a call that day. Then the therapist asked me, “What are you doing here?”

I was completely caught off guard. I told her that my son had been brought by ambulance from the ER two hours away to a hospital. That it calmed him when I told him I was going to be in a hotel in the same town. And, that I had expected to be able to visit. I didn’t know that they were not allowing visitors due to Covid. I told her that I was not driving two plus hours home until I knew the plan of action. And that it was a good thing I was there because I needed to drop by cigarettes and clothes.

Her reply? “Our other patients don’t have someone bringing them cigarettes and clothes. Some of our patients only have the clothes they came in with. Most of our patients don’t have family in their lives at all.”

I have given this conversation a great deal of thought. What was her point? That Travis was taking a bed from someone else? Does someone else deserve it more because they don’t have the support of a family? Can’t you be sick and have a family?

Or did she think I do too much for him? The bottom line for me is that I believe he will be able to focus on the work of getting better if he has his nicotine and has some clothes to wear. If they allow patients to smoke, then he should be able to smoke. Change is difficult for Travis. He is already way outside his comfort zone.

A psychiatric nurse practitioner did get me called later in the afternoon to get some information about Travis and the medications he had been prescribed in the past. She said the plan was to take him off his current mood disorder prescription as it obviously wasn’t working. They started Travis on three new medications. Two of them he would take daily and one of them was as needed. She was surprised that we hadn’t already tried these specific medications. She did tell me that the plan was for him to be there for at least a week.

Travis had been showing threatening behavior. The behavior that I called rage and anger, the nurse practitioner described as manic. I told her when I thought bipolar, I pictured someone on a cycle where they can’t get out of bed because they are too depressed for two weeks straight, and then the next two weeks they have so much energy they are cleaning their entire house with a toothbrush.

Because the call came so late in the day, I had already booked another night at the hotel. I drove home first thing the next morning.

The first full day at the psychiatric hospital was rough for Travis. He didn’t have access to his phone, so he wasn’t able to call me the typical nine times a day. But when he did call he was angry and insisted that I check him out right away. I asked him to please do the work.

The following day (day four) Travis called and he was pleasant. He said that he was already starting to feel better. He even said that he felt like he should stay a couple more days just to be sure the medications and doses were right. He said that he was glad that they limited the amount of cigarettes he could smoke each day because he had been wanting to cut back on smoking. He recognized that he was already coughing less.

The following day (day five) we had a family meeting call that included me, Travis and his therapist. Again, Travis was in a good mood and able to carry on a positive conversation. We talked about his progress and treatment, safety concerns and clinical aftercare. Travis said that he was working on getting back to who he used to be. He shared that the new meds have been helping.

I can’t even describe how happy and relieved Tracy and I were to hear Travis talking in a positive manner. To be honest, it’s not a regular thing.

Then came Saturday. Travis was a mess. Tracy and I were thinking well, that was the shortest honeymoon period ever. Over the years there were times that Travis would do well after being prescribed a new medication. For a while. Then, just like that, the mood and behaviors would come back. We call it the honeymoon period.

Over the weekend one patient had to be moved to a different unit because he and Travis couldn’t get along. Then Travis ended up getting moved to a different unit because there was someone else that he was clashing with. When they moved him to a new unit, they started treating him like he was a Type I diabetic again. They only fed him oatmeal for breakfast and salads the rest of the day. They kept pricking his finger to get glucose readings.

Travis was not happy.

Imagine my surprise when the nurse practitioner called me on Monday and told me that the weekend doctor and therapist said that he was doing well and they were talking about discharging him. I asked her why they moved a patient to a different unit. She said they both were exhibiting threatening behavior. I asked her why Travis changed units. He was exhibiting threatening behavior. I asked her if they recorded phone calls out, and if so maybe the team could listen to the calls Travis made to me.

He once again was talking about killing himself. I told her we were so excited because he sounded so good on Thursday and Friday. I reminded her that the idea was that he be stable and having two good days followed by anger and threatening behavior was not stable. She agreed to do more work in getting the medication doses dialed in. I asked her what the genetic testing results showed.

On day three the nurse practitioner asked if Travis had ever been genetically tested to determine which medications might work best for him. I told her that we had asked for it to be done, but that it hadn’t been approved. She indicated that they would do it. Only somewhere along the way the ball got dropped. They ended up doing the test, after Travis had already been there for a week.

Travis was released this past Thursday. The team felt like he was stable. He did well that day and Friday, even went to a movie with his live-in aide.

I woke up on Saturday morning to sixteen angry texts from Travis.

I asked the nurse practitioner if they could send a couple of days worth of his new medications home with Travis. She said no, but she would call them in to his pharmacy right away. Unfortunately, there was a couple of hiccups getting the meds filled so he missed a dose. Travis’s nurse made a trip to his house to stock his medication box. While there he called Travis’s local psychiatrist to give him the details of the new medications prescribed.

When the psychiatrist realized that I was there he asked the nurse to hand me the phone. The entire time Travis was in the hospital the psychiatrist had never contacted me to ask how he was doing. I had given his information to the hospital team, so I assumed they were in contact when I didn’t hear from him.

He told me that he was unhappy with the medications prescribed and that he would not be refilling at least one of them. Deep sigh. Two of them might affect his glucose level and one of them required regular blood work to keep an eye on Travis’s kidney function. Travis already does regular blood work for his glucose and red blood cell count. The nurse practitioner said she was surprised that Travis hadn’t tried these meds, now we know why.

Shouldn’t we at least keep him stable on these medications until we know how they are going to affect him? There is a difference between they might affect and they will affect his glucose level.

The struggle is real.

Oh, Travis still has his big heart. When I went through his things the form that had his cigarette inventory on it had to be signed off by him because he donated some of his cigarettes to other patients. Also, during one phone call to me Travis told me that he made a friend and told the guy to move to Fort Collins when he got out. Travis told him that I would help him get on his feet. I found the guy’s phone number in his things.

Did I mention the struggle is real?

“Fall down seven times; stand up eight.” - Japanese Proverb

“I am thankful for my struggle because without it I wouldn’t have stumbled upon my strength.” - Author Unknown