If I were to use an alternative title I'd name this post 'Some Highs and Some Lows.' Yesterday was a rough day to say the least. Patrick started out in the ICU coughing up some blood clots, which as it turns out is totally normal, but when you are trached it is extremely scary. Not that I can speak from first hand experience, but I can see the fear in his eyes when it happens, and the notes he writes post episode tug at my heart strings.
The Speech Pathologist was in his room in the morning and she helped Patrick to use his voice. He was able to say, 'ahhhh.' There is mention of either removing the trach all together or replacing the one he has now with one that will allow him to speak.
Patrick's good friend drove three and a half hours one way for a 20 minute visit yesterday. He really lit up when his friend was in the room. I am thankful for moments like these.
He gets frustrated with me when I'm not able to read his lips or understand what he needs or is trying to say. He becomes upset when I'm not sure how to do certain things, medically speaking. I'm doing my best, but his patience is low, understandably, so I left at the end of the day feeling emotionally exhausted. I know he's not trying to make me feel frustrated and I'm sure some of his reaction is based on the large amount of medication he is on, but it's still hard.
Not only was Patrick able to use his voice box, the drain in his mouth was take out in the morning. This drain was really bothering Patrick as the width was large and the end was constantly poking him in the tongue. Getting that out was helpful.
Patrick was given the okay to drink small sips of water and eat as much ice as he wants. He was able to swallow fairly well and took down several cups of water. Drinking and pushing fluids through his feeding tube cause him to be rather gassy, so a burping contest would suit him well right now. He can swish and spit too and little green sponges on the end of sticks have been like candy. Just being able to wet his mouth makes him a little more comfortable.
My fighter was up and walking around the ICU again and he ventured onto stairs. Because of his determination to move, he no longer has to wear the pressure cuffs on his legs. One less tube or line attached is another point for the home team.
Patrick is experiencing an extreme amount of anxiety. We are guessing the feeding tube and trach are giving him odd sensations in the back of his throat, causing him to be nauseous. At first we thought the NG tube might have moved in his stomach, but the X-ray told us it is in the exact same place as it was immediately following the operation. So, to help with the nausea, they stopped the feeding for 12 hours, gave anti-nausea medication, and went back to using the I.V. for medication and hydration fluids. The slow trickle of liquid nourishment was started back up during the night and he seems to be doing fine, yet still complains of nausea. The anxiety causes his pulse to soar and him to become really upset. He does not like to be alone in his room. The only time he can rest is if someone is sitting with him. I am constantly reassuring him that he is breathing and all is well. My older sister, the nurse, came to our rescue last night. She graciously offered to stay at the hospital with Patrick. She took care of him, kept his anxiety down, and because she is so awesome will be doing it a second night. I'm not sure what I would do without her.
Patrick was moved from the ICU in the afternoon. He now has a room on the fourth floor. It's progress, but again, leads to some anxiety for him. The 'call' button does him no good. When they answer and ask, 'how can I help you?' he obviously cannot reply. For this reason, his room is near the nurses station, but it took seven minutes for the nurse to come after I pressed the button. When you are having breathing issues or the feeling of having them, that is a very long wait. This leaves much to be desired in the area of trust with Patrick. This is part of the reason he wants to have someone with him at all times.
It's a lot! Having a husband recovering from major surgery, waiting for a pathology report, having two children who are sick one of which is nursing, being sick myself still because I'm not getting enough rest, a dog, a house, and a commute to and from the hospital each day really can take a toll on you. I'm trying to keep my chin up even through the difficult times. I'm so very thankful for my support system and as I told a friend on the phone last night, I'll just keep chugging along. Reminds me of 'The Little Engine That Could.' Chugga-chugga-choo-choo...
Is this journey over yet?