Tues update on Nick...
Jenn Clark
Tuesday's Update
Tuesday was a pretty bad day for Nick and I. (Particularly for him, of course.) When I went to see him in the morning, his nurse, Anna, said that he'd had quite a bad night. He didn't really sleep at all, and was quite anxious a lot of the time. I can't remember if I've mentioned this already, but Nick has hardly slept for the entire time he's been in the hospital, and he didn't sleep for the two nights prior to that either because he was in so much pain. He's so exhausted, the poor little guy, and I personally think that that's one of the reasons his hallucinations are so bad; he's basically had seven hours of sleep (at two different times) in the past seven days...I think that would make most of us hallucinate!
Anna said that she spent quite a lot of time asking him questions, trying to get to the bottom of his anxiety so she could help him get over it. She learned that Nicholas very much misses being able to go outside like other people, and that he's deeply afraid that he'll never be able to leave the hospital again. I would ask those of you who are praying for him to pray that he'll be able to understand and to believe us when we tell him that he will get better, and that this horrible time is not what the rest of his life is going to be like. That's an awful fear for a little boy to have.
One of the worst parts about yesterday for me is that Nick's doctors decided that he needed to have a PICC line put in. It's basically an IV that's meant for long-term use, because regular IV's deteriorate pretty quickly and become unusable, and his two IV's have been in for a while--the one in his hand was put in at the Alliston hospital, and the one in his foot has been there since Friday morning. PICC stands for peripherally inserted central catheter. It's inserted into the upper arm, and runs up through a vein to just beside the heart. The benefit, I was told, is that when his meds are injected into the PICC line they're dispersed throughout his body very quickly because they're coming out right next to the superior vena cava of the heart. However, there are a lot of potential dangers, so I had to go and have everything explained to me by the doctor, and sign a consent form. The recitation of all the possible risks were frightening, to say the least.
The insertion of the PICC went well; they had to unbandage his arm to see if they could find unbroken skin to use, but that was no problem--his skin is healing very nicely. The other procedure that they were doing did not go so smoothly, though. They decided to advance his naso-gastric tube about 15 cm so that the end would be resting in his bowels instead of his stomach, thereby speeding up the process of the absorption of nutrients from his food. This is a pretty common procedure, I was told, but unfortunately, it wasn't routine this time. The doctors forgot to close off the valve beforehand, so when they started moving around the NG tube a bunch of bile from Nick's stomach spurted up and went all over his face, in his eyes and ears, soaked into his bandages, etc. Anna called me the second they brought him back to his room, so I was able to help her clean him off and make him comfortable again, but the whole thing was very upsetting to me. (And to Anna, who was supremely ticked!)
Good news for the day: at about 10:00 yesterday, Nick's RT (respiratory therapist) came in, examined him, and decided to turn his ventilator right down. Up till now it has been giving him 17 breaths per minute. After it was adjusted, he was breathing on his own!!! The vent was just giving him a tiny bit of pressure to encourage him to inhale, but he was pretty much just doing all the work himself. We're so excited by this; because of that and the fact that the swelling in his esophagus is totally gone (don't remember if I mentioned that either) the only thing now that's preventing him from being taken off the ventilator is the high levels of morphine he's still on--100 microlitres at the moment, plus whatever extra boluses they add according to his descriptions of his pain. (A microlitre, as I have learned, is one millionth of a litre.)
Have to take a break now and spend some time with my girls. I think I'm all up to date, but I'll read through this later and see if I missed something, and then add a few comments about today's events that Jim told me about this morning. Thanks for listening, everyone! :)
Tuesday's Update
Tuesday was a pretty bad day for Nick and I. (Particularly for him, of course.) When I went to see him in the morning, his nurse, Anna, said that he'd had quite a bad night. He didn't really sleep at all, and was quite anxious a lot of the time. I can't remember if I've mentioned this already, but Nick has hardly slept for the entire time he's been in the hospital, and he didn't sleep for the two nights prior to that either because he was in so much pain. He's so exhausted, the poor little guy, and I personally think that that's one of the reasons his hallucinations are so bad; he's basically had seven hours of sleep (at two different times) in the past seven days...I think that would make most of us hallucinate!
Anna said that she spent quite a lot of time asking him questions, trying to get to the bottom of his anxiety so she could help him get over it. She learned that Nicholas very much misses being able to go outside like other people, and that he's deeply afraid that he'll never be able to leave the hospital again. I would ask those of you who are praying for him to pray that he'll be able to understand and to believe us when we tell him that he will get better, and that this horrible time is not what the rest of his life is going to be like. That's an awful fear for a little boy to have.
One of the worst parts about yesterday for me is that Nick's doctors decided that he needed to have a PICC line put in. It's basically an IV that's meant for long-term use, because regular IV's deteriorate pretty quickly and become unusable, and his two IV's have been in for a while--the one in his hand was put in at the Alliston hospital, and the one in his foot has been there since Friday morning. PICC stands for peripherally inserted central catheter. It's inserted into the upper arm, and runs up through a vein to just beside the heart. The benefit, I was told, is that when his meds are injected into the PICC line they're dispersed throughout his body very quickly because they're coming out right next to the superior vena cava of the heart. However, there are a lot of potential dangers, so I had to go and have everything explained to me by the doctor, and sign a consent form. The recitation of all the possible risks were frightening, to say the least.
The insertion of the PICC went well; they had to unbandage his arm to see if they could find unbroken skin to use, but that was no problem--his skin is healing very nicely. The other procedure that they were doing did not go so smoothly, though. They decided to advance his naso-gastric tube about 15 cm so that the end would be resting in his bowels instead of his stomach, thereby speeding up the process of the absorption of nutrients from his food. This is a pretty common procedure, I was told, but unfortunately, it wasn't routine this time. The doctors forgot to close off the valve beforehand, so when they started moving around the NG tube a bunch of bile from Nick's stomach spurted up and went all over his face, in his eyes and ears, soaked into his bandages, etc. Anna called me the second they brought him back to his room, so I was able to help her clean him off and make him comfortable again, but the whole thing was very upsetting to me. (And to Anna, who was supremely ticked!)
Good news for the day: at about 10:00 yesterday, Nick's RT (respiratory therapist) came in, examined him, and decided to turn his ventilator right down. Up till now it has been giving him 17 breaths per minute. After it was adjusted, he was breathing on his own!!! The vent was just giving him a tiny bit of pressure to encourage him to inhale, but he was pretty much just doing all the work himself. We're so excited by this; because of that and the fact that the swelling in his esophagus is totally gone (don't remember if I mentioned that either) the only thing now that's preventing him from being taken off the ventilator is the high levels of morphine he's still on--100 microlitres at the moment, plus whatever extra boluses they add according to his descriptions of his pain. (A microlitre, as I have learned, is one millionth of a litre.)
Have to take a break now and spend some time with my girls. I think I'm all up to date, but I'll read through this later and see if I missed something, and then add a few comments about today's events that Jim told me about this morning. Thanks for listening, everyone! :)
Comments
I really have no idea about how serious things from the outside are... But couldn't photos from outdoors (familiar friends and places?) be brought in for Nick, or flowers or colourful autumn leaves? This might help with the connection to people, and normality, and you know, comforting. It seems really obvious though, so I'm afraid that these things are not allowed/recommended for safety reasons. :(