As time passes, we learn more about what is happening medically. The medical staff have explained that in order to take out the lymph node in JJ’s back, they have had to cut through a muscle. They also had to take out his intestines and then put them back in his body. When an intestine is touched, it automatically “goes to sleep” and it takes a day or so for it to “wake up” which is why JJ could only suck on ice chips yesterday. Besides incision pain, JJ experiences painful spasms because of the cut muscle. We can tell when he is experiencing a spasm because his whole body tenses up in pain and he clenches his fists. When we see him suffering a spasm, we hold on to his hands and let him grip our hands.
JJ has had a lot of painful spasms through the night and into today. When the pain gets too bad, the nurses talk to the “pain doctors” who manage JJ’s pain. The pain and, I think, some of the meds, is causing JJ to not exhale enough CO2 (which triggers alarms) so until his breathing is constantly in the “acceptable” range, the doctors have to be careful about giving him pain meds that would address the spasms because they can affect his ability to breath.
This morning three doctors came to see JJ. I think they were from his Urology Team. They checked his dressing, discussed his breathing, told us that JJ can begin drinking liquids, and said that the goal today is to get JJ sitting in a chair three times. Getting him upright will prevent blood clots and pneumonia. They said that from their stand point, JJ is doing excellently.
The medical staff–both the nurses and the doctors–are awesome. They exude compassion. Last night the nurse told us that JJ’s surgeon is the very best in the world for this type of condition and that people from all over the world come to learn from him or be treated by him.
Semi-private rooms just have chairs and families cannot sleep overnight. Families can stay overnight with patients who are in private rooms. The palatial private room JJ was moved into last night has a couch. However, it is only ONE couch. EJ and I have been taking turns sleeping. Since I had had the least sleep (a night of little sleep and another of absolutely no sleep), I slept on the couch during the night. The sleep is interrupted by medical staff and machine alarms. The nonsleeping person is busy attending to JJ. We are able to participate in his care somewhat. We find the nurse when there is a need, we turn off the CO2 alarm (which goes off often), we give JJ hot or cold packs for his abdomen and we hold his hands.
EJ and I are seriously sleep deprived.
We talked about making a brief run to our hotel suite for a shower and change of clothing sometime today. We slept all night in yesterday’s clothes because we weren’t prepared to stay overnight.