Today I am frustrated! I am not going to apologize, I am not going to listen to people saying calm down, today I am just pissed. Give me a few hours and I will be better.
Saturday night Jude fell asleep and slept 18 hours. We were all a bit worried and were wondering what was going on and wondering if he was becoming more sick. Jude would react to us but it was like it took to much effort to open his eyes. Finally Jude began to wake up and to interact with us so we were all a bit relieved. We are guessing his body was just exhausted from all the respiratory issues and just needed sleep. Overnight he had some tone issues and I kept hearing his alarm go off noting his oxygen had dropped. I then kept hearing the nurse suction Jude because of his bad cough. So I kept coming in to check on Jude and I just couldn't sleep. Finally about 3am I heard his feeding alarm go off and I knew there was an issue with his feeding tube. We spent about an hour and a half trying to unclog it. Mike tried, I tired, and the nurse tried. We pushed water, coke, everything that is suppose to work and nothing worked. I cannot stand this G J button because of the clog issues. However we can normally unclog it and go about our lives. Finally about 4:30 we gave up and went back to bed hoping Charlotte could unclog it when she got there in the morning but it was a no go.
So now I am trying to set up Hospice transportation to take Jude downtown to Cooks to do an outpatient procedure to get this situation resolved. I am having to call back and forth between different departments within Cook's because no one can seem to get the right hand to work with the left hand and get this situation taken care of. We do not want to come in with a hospice team and sit in the ER for hours. So if we can set an appointment with radiology we can go straight in and deal with the doctor that took care of placing the tube originally. However I keep getting transferred around and I am at my wits end. So I finally just called Palliative care at Cook's and once again they were amazing. The PA said if she has to walk the order to the doctor herself that she will get this handled and she understands my frustration. So I am waiting on calls back so I can get everything finalized and get Jude down there to get this handled. Since Mike has an excuse from work due to his back he is going to ride with Jude. So I feel terrible I am so frustrated when I am not even the person going or the person with the clogged button. Today was the first time I just sat down and said "REALLY? When do we catch a break. When does Jude catch a break". I keep reminding myself that our lives are chaotic but still blessed. Breath in breath out.