Today is Day 17 of our hospital stay. Every day, Chris Jr. progresses. Yet, there is a new issue every day. I love our hospital. We've been with his medical team since I was pregnant. However, this stay has become a nightmare. Several times, I was told to look at Chris Jr. as a parent and not a medical professional. Now, I feel like I have to monitor and oversee every single thing that's done to him. I've dreaded writing this post but this has become unbearable. Ever since Chris Jr's failed extubation, I've been concerned about his care. I haven't had a good night of sleep in days because I feel like I have to constantly watch my son. Not only do I have to watch his health but I have to watch the nurses that interact with him. I am truly uncomfortable and I've voiced my concerns several times.
After his exubation fiasco, I voiced our concerns to his charge nurse. She told me that she understood my concerns and would push for more education on the respiratory equipment. I also realized that I had to advocate for him even more because the doctors didn't check his sedation levels before the extubation levels. They ASSUMED that his levels would go down since they had stopped some of his sedatives. He was a "rare" case since his levels increased after stopping the medication. I tried to let that situation go. However, too many situations have happened that made me question alot of things.
At one point in time, I felt like the nurses were dismissing me as an "angry black woman". There was a shift change and I usually like to meet the nurses before they start their assessment. I talk to them about how the previous shift went and things that did/didn't work for Chris Jr. In an effort to do this one morning, this nurse told me that I should "take a break and let her handle things". I'm a mother. How can I "take a break" from looking after my son? Although I wanted to curse her out, I had to remember that she was in charge of my son's care. Unfortunately, my relationship with the nurses dictates how they care for my son. If they like me, they tend to come in more often to check on him. If they don't like me, they try to avoid coming in his room unless they have to do an assessment or give meds. I've had to check them on giving Chris Jr. old breastmilk. I've had to correct them on the dosages of his medication. Since being extubated, Chris Jr. has a lot of secretions and needs to constantly be suctioned. If he isn't, he risks having to be intubated again if his airway becomes blocked. I guess one nurse didn't like that I was asking her to suction him and she told me that I could suction him on my own if I felt the need for him to be suctioned. Sigh. Then, we woke up one morning, and learned that Chris Jr. was placed on Gabapentin because the nurses said that he was "agitated" during the night. A 6 month old- agitated. How do you even define agitation in a 6 month old? You don't prescribe meds, you get his parents to calm him down. We were so frustrated about this but we could't just tell them to stop the meds now that it had been started. It's frustrating because the vets that I work with are on gabapentin. This is a neuro med that has complications and it should have been discussed with us.
In addition to this, we had an episode where Chris Jr. was almost intubated again. So in the Cardiac ICU, alot of the nurses are paired with trainees. These trainees are supposed to be supervised but sometimes they're not. The trainee for that night was giving Chris Jr. his meds and performing his blood tests. Next thing I know, I'm told by the attending that his labs showed that his blood gases were off and he was in a state of metabolic acidosis. We were told that too much acid was accumulating in his body and he needed to be intubated again. They had the equipment and team ready to go. This made no sense to me because I had my son in my arms and he was doing fine. After I pleaded with the team to take his gases again, it turned out that the Nurse trainee contaminated his blood draw and that his gases were indeed fine. Since then, I haven't been able to sleep at all because I'm so fearful of what could happen to him if I'm not keeping an eye on the nurses.
He has also had a fever for the last 10 days that remains unexplained. They've tried antibiotics, motrin, tylenol, and Toradol. They've done urine/blood cultures and a viral panel. He doesn't have any signs of a viral or bacterial infection. I've asked them if his fever could be caused by some of the medications that he is on or his opiod withdrawal. I started tracking his fevers and noticed that there was correlation with some of his meds.
After only having 2 hours of sleep, I lost it in morning rounds. His night nurse reported that he was having difficulty sleeping and recommended adding Seroquel. I went off because I was up with him all night. He had difficulty sleeping because he had alot of mucus so he was coughing all night. I stayed by his bed and made sure that I kept suctioning him when needed. I told him that he doesn't need another medication. They said that I was driving myself crazy by not sleeping. I said that if I didn't have to monitor what happened to him, I would be able to sleep more. That night, I laid in bed with him like we do at home and he slept the entire night.
So I had to put my foot down....I asked them to make sure that I was informed of any medication changes and to consult with me about trying non-pharmaceutical methods first.
I know I need a break....even a small one, but I just feel like if I leave him, I'm going to come back and he's going be intubated and sedated all over again.
So far, we've voiced our concerns to everyone that will listen. The nursing director said that she will work with us to see if we can have specific nurses for his care. She asked us to send her a list of the nurses that we trust and she would try to help us.