I get to the hospital by 7. He is getting his RT treatment when I get in the room. The RT says he sounds really good. He does not need suction. At this point we have complained about his struggle with breathing enough and each member of his treatment team are in search of the Pulmonary MD to get the trach swapped.
OT arrives before breakfast and get him dressed. He is able to eat some, but just enough to take the growing number of pills in his pill cup. I inquire what it all is. Pain, muscle relaxer, multi-vitamin, vitamin A, Zinc, something for his stomach and something to loosen mucus. His RN was talking about a “half pill” for his heart rate. Colin protested the heart med. “For your fast heart rate” she told him. I didn’t see a half a pill nor do I want medications regulating his heart rate if it is ok. I mentioned it to Colin after they left. We agreed there seemed no need for the half pill.
It is unfortunate that his PT was scheduled before the trach was swapped. He struggled to breath as they sat him up. His stats dropped (they call it de-stating..is that a word?). He was only able to sit for a little bit, then his session was over. Maybe tomorrow will be more productive.
His OT had made a successful inquiry into a different room. Bigger. It had just become available the day after Colin arrived. So, he was moved. It is bigger. There is a cot and a table. This is for the long term patient. It’s nice to have the extra room even with all the machines. Suction machine, huge thing on wheels, coughing assist machine, one they don;t use much because it’s “old school”. IPV machine for the puff test. Oxygen tank. The wheelchair is not even in the room yet and we can sit maybe 5 people in here.
The moment he is settled, Pulmonary arrives, swaps out the trach and sweeps out, all within 10 minutes. He can breath easily now but his oxygen stats are lower. He is coughing and hacking stuff. His RT treatment is done again and he needs some suction.I get some good stuff out. The mucus loosening meds, the RT treatment and the trach swap with lubrication, are all causing him to have extra secretions and some thick stuff. His stats plummet during lunch and the ST pulls the valve. He cannot eat now.
His temperature begins to climb by early afternoon gain, as always. I turn him, get his clothes off and TED socks to try to cool him off. His RN tells us the Medical MD, from his transfer back to ICU who is apparently still hanging n the case, want a bunch of tests to determine the cause of his fever. Colin, myself, his father, his rehab MD and most reasonable people all think the fever is from the new hardware in his neck. This medical guy, whom I have never seen and do not think he has seen Colin since ICU, if at all, won’t have such a simple explanation. Colin is schedule for another MRI, CT scans as well as leg ultrasound to check for clots (even though they give him blood thinner twice a day AND he has a filter in his vein still). WTF we ask each other.
Not long after his valve was pulled we realized I had not given him his meds during lunch. I put the valve back in, he had his meds and he was doing well so we left it in. They bring in a full liter of “contrast” liquid that has to be ingested before his scans. And he is not supposed to have anything to eat or drink except this stuff. He resigns to his task and I start giving him about 60ml at a time through his stomach tube.
My husband arrives to hang out and visit. Colin begins to have low Oxygen numbers and is coughing hard. He drops to 87 so I suction him and get some out. His numbers stay around 88 and get to 89 when his valve is back in. He is not struggling to breath, does not look pale. His numbers are stable. I get another oxygen sensor and put it on his forehead. 100%. I mess with one one on his finer, still says 88. I am going to look up any difference in reading for these but shouldn’t his oxygen be 100% fucking everywhere?
By now transportation has arrived to take him for an ultrasound. I hug my husband and follow along. The ultrasound is good and then we wait for 35 minutes to get back to the room. I had to go searching for someone to let them know he is taking contrast fluids for scans to expedite the transfer. The Supervisor ended up taking him.
Once back in the room, he rested with great oxygen stats (97) and I administered the contrast stuff slowly over the next couple of hours. I put fresh linen and pads on his bed, remove the diaper, wash and dry him. By 9:45 I went searching to let his RN know that he was getting the last of what he needed to have. She told us it was going to be a couple more hours. A scan machine was broken and they only had one for all the trauma, ICU, CCU and critical patients. I protested. He cannot eat, he cannot drink, he just took all this crap and now he waits. My confidence in the unseen MD is waning. We waited until 11. “Fuck this” Colin says. “I gotta eat.” ‘Agreed” I reply.
I hunt the RN down and ask to reschedule for tomorrow, he is going to eat. She tells us it will probably be the same tomorrow and they won’t call for him until midnight or 1 am. Colin is hungry and he wants to eat. She says she will let them know he is not going down tonight, I heat up is dinner and he get to start eating. In about 15 minutes transportation arrives to “take you to CT”. Seriously? “I am eating, I can;t go” Colin says. The transport guy says “I think you can, let me check.” Colin says he is going to keep eating and I keep feeding him. The guy returns and say sit’s ok if he has eaten. We look at each other. It seems by now we would be used to the lack of communication between departments. This really is ridiculous. The RN was told no food or drinks, gave him meds with water. CT says no food, then food is ok. Colin just wants to eat. He tells the transport guy he will go tomorrow and drink another liter of that contrast stuff, just so he can eat.
By 11:30 he has eaten everything. By 11:45 he is drifting off so I put him in the valley. With great reluctance I let him know he had been given his sleep med long ago. He was tired enough to give minimal grunts of disapproval. I kissed him, made sure he was comfortable and clean, left for the rest of the night. Finally crawled in bed, missing my husband, by 12:15 am. Maybe later today would prove to be better.