5:30 a.m., the alarm sounded. The first thought to waft its way through the fog into my semi-conscious state ... "It can't be morning. I just fell asleep." Something has to give. Four to five hours of sleep a night, running all day, my body is starting to protest.
As the wise and wonderful Paul Holland (Troop 1, North Caldwell Boy Scout leader) said - "you have to put on your oxygen mask before attending to your child." It's so easy to hear that. It's easy when I hear myself saying that to new families when they arrive. It's is quite another thing to do it myself. I just want to take care of him. I do make sure I get a few hours of sleep at night and cat nap in those uber-comfortable (does sarcasm transfer through the computer?) chairs during the day. I also make sure we get out and eat, because Krystina is little enough!
But every time I try to get a break from the room, even if just to walk around outside, do laundry, go for lunch, make a phone call, someone comes looking for me - doctor, nurse, finance, SFAC, WTB, AW2, OT, PT, Speech, RT, etc. I had four people call me today and I had to cut all four of them off. I wanted to call three others today as well as call back the four I cut off, and here it is 21:40, and I have not had time to pick up the phone yet. There will be time to call people and deal with things once I get Derek out of those woods and more settled. Unfortunately, he is taking longer than any of us ever thought he would.
Tomorrow we are here 7 weeks. At the same time it feels like only a few days, it also feels like a lifetime.
During rounds this morning, they discussed possibly moving Derek up to the ward within the next day or two. I want him to be ready. I am ready for him to be ready, but I am nervous. I like the one-on-one care in the CCU, SICU, or whatever it is called these days. I like knowing that if we need something, we have a wonderful nurse right there ready to help us. I have heard that the nurses upstairs are wonderful, too, and I am sure that I will get to know them all, but I have a comfort level with the CCU staff that is unparalleled.
This morning when I got there, Derek's nurse was laughing and said she and Derek had just had a great conversation. Last night, she was so happy she finally got to take care of him. She had assisted with him, but she was not his nurse until last night. She told me this morning that after some of the doctors left, he turned to her, shaking his head and said, "Why were they yelling at me? My ears are fine. Idiots."
I have noticed that with a lot of people who come into his room to talk to him, visitors, doctors, etc. Not nurses, who seem to know how to handle patients the best, though. They will use a normal voice when talking to me, and then turn and yell at him. Or the best is when they make hand motions to show what they are saying, such as pointing to me and the door when saying they are going to talk to me outside, or putting their hands together and bowing and then pointing at him while saying, "praying for you." Hello - ears and brain working. It's the legs and arm that were hurt.
This morning there was some risidual confusion left from the medications, and then Derek slept all day, but he had a very busy day that could have tired him out. I'm going to go with that and not with the reason he slept all day Saturday and Sunday. Let's wait and see what tomorrow brings. His confusion this morning was wondering where the other guy from his room went. He said he was lying there a minute ago and wanted to know if he left for surgery. He was also convinced that he had checked his bank account and did not see his pay check deposited once Dr. Dan told him it was pay day in response to Derek thinking it was Sept 14th.
Dr. Dan. We like Dr. Dan. I told him I was chaining him in the basement with Dr. Ugo so we wouldn't lose him. But, oh yeah. Derek let Dr. Ugo go. Darn it. That's one reason I wouldn't want to leave CCU. We will lose Dr. Dan, but then his rotation will be up soon anyway. He will have to come visit, and he still owes us that beer at the "Humping Turtle" (a/k/a Harp and Fiddle). Dan wears a green jacket over his scrubs and when he runs down the hall it floats out behind him like a cape - superdoc! We love Dan.
White cell count is down to 16, which is good, and there are no fevers. Secretions were up, and his breathing was labored. One of our favorite RTs, Angela, visited many times today. Every four hours he had to have this vest on that vibrates him hard and helps break up the mucus.
While Angela was there, she was working with him on how to talk without the speaking valve in place. If he holds his finger over the hole of the trach, he can be heard. We were discussing what happens when he goes to the ward and one of us is not with him and he needs the nurse. So Angela showed him how to get his finger over the trach and told him to say something. He was very soft the first couple of times, but then he yelled out, "Help!"
His nurse, Gary, was right outside the door and he rolled his chair to the opening of the door with this look on his face that said, "what the heck in going on in here?"
It reminded me of when Derek and Michael were about 4 and 5 years old and I had them in the mall with me. I was teaching them what to do if they were ever grabbed by a stranger. We were in the elevator alone, and I had them each practice yelling, "you are not my mommy/daddy." When the door opened, Derek decided to yell, "You are not my Mommy!" at the top of his lungs. There stood a security guard. He reached for his radio. I took the boys' hands and said, "good job. That's just what I want you to do if you are ever taken by a stranger. I walked through the mall, praying I would not feel a tap on my shoulder.
Derek received his PIC line today. Hopefully he won't have any more line problems, although the two techs who inserted it didn't thrill me. I watched the procedure to try to keep Derek calm. It occurred during rounds, so I missed part of rounds. Rounds or keeping Derek calm? Easy choice. I caught up with Dr. Dan and some of the other docs on the floor afterwards and they filled me in.
Our favorite OT Sam came and put on an ugly purple shirt. She said she looked for the ugliest purple shirt she could find! We love her! The shirt is specially made to snap down the sides so it will fit over the IVs for when he finally gets out in his wheelchair.
Our favorite PT was by too, but Derek was too tired to get into the chair. She worked out his leg a little and left it for another day. His breathing was just too labored.
The speech therapist Laura was by to work with Derek again and make sure he was still swallowing
The most aggravating part of the day concerned the anesthesia department. Defensive much? Someone came by for a post-op visit and asked if everything went okay yesterday, if there were any concerns, and if there was anything I wouldn't want to happen again. Well, don't ask me a question you don't want answered. I told her that Derek destatted. She asked me what I meant by that, so I told her, to which she responded, "Well, how do you know? Were you there?" When I explained to her that I had been briefed by the doctors and nurses on his case, she became very condescending in her tone and started to say, "well, ma'am, sometimes in the OR, patients . . ." I cut her off and told her that the doctors did a very good job of explaining what had happened, that she had simply asked me what I did not want to happen again and I told her. She turned and left.
When they came to get my consent for anesthesia tomorrow, I told the doctor that I wanted them to be aware of what had occurred yesterday and that Derek has a history of sensitivity to the gas, which may have contributed to the issues. She got her boss who seemed quite upset that the surgeons were blaming anesthesia for the problem. That wasn't my perception at all. They actually told me they had no idea what caused the problem, and I told him that. They did a CT scan, chest x-ray and bronchosocopy, all of which were clear except for the known pneumonia, so they really have no answers except that he had an issue when trying to wake up and we need to watch it in the future.
One of the funniest moments of the day was with Dr. West, who I am still convinced will have me committed before we are through. He told Dr. Perdue and Dr. Bograd that he showed up on Tuesday afternoon to find me standing in the door with my arms crossed and frowning at him over my glasses. He stood there imitating me to the laughter of the other two doctors. It was quite amusing. *shaking my head*
He was not in on Monday when Derek was extremely delusional, and we had been looking for him. He returned to the messages and a very unhappy Mom on Tuesday. "I picked a bad day to go golfing," he laughed. But then it was for a TBI fund raiser, so I might be able to forgive him.... eventually.
During rounds this morning they discussed discontinuing the remeron for sleep and putting him back on seroquel. He had not had as much success on seroquel before. Dr. West went looking for the team and convinced them that remeron was the right path. Dan came in and instead of spinning it in a positive way for himself and saying they discussed it and remeron was the way to go, he was honest and said he was wrong and he was going to defer to the expert. His credibility with me jumped a couple of notches. I appreciate the honesty.
One of the nurses was passing me today in the hall and he yelled at me, "I heard the great news!"
I responded, "That we might be moving to the ward?"
Him - "No! The other great news?"
Me - *confused look*
Him - "You're awesome!"
Me - *blushes*
*rolling eyes* The staff is great. They are not only there for the patients, but for the family as well.
Good night, sleep tight, don't let the nightmares bite!
God bless!
As the wise and wonderful Paul Holland (Troop 1, North Caldwell Boy Scout leader) said - "you have to put on your oxygen mask before attending to your child." It's so easy to hear that. It's easy when I hear myself saying that to new families when they arrive. It's is quite another thing to do it myself. I just want to take care of him. I do make sure I get a few hours of sleep at night and cat nap in those uber-comfortable (does sarcasm transfer through the computer?) chairs during the day. I also make sure we get out and eat, because Krystina is little enough!
But every time I try to get a break from the room, even if just to walk around outside, do laundry, go for lunch, make a phone call, someone comes looking for me - doctor, nurse, finance, SFAC, WTB, AW2, OT, PT, Speech, RT, etc. I had four people call me today and I had to cut all four of them off. I wanted to call three others today as well as call back the four I cut off, and here it is 21:40, and I have not had time to pick up the phone yet. There will be time to call people and deal with things once I get Derek out of those woods and more settled. Unfortunately, he is taking longer than any of us ever thought he would.
Tomorrow we are here 7 weeks. At the same time it feels like only a few days, it also feels like a lifetime.
During rounds this morning, they discussed possibly moving Derek up to the ward within the next day or two. I want him to be ready. I am ready for him to be ready, but I am nervous. I like the one-on-one care in the CCU, SICU, or whatever it is called these days. I like knowing that if we need something, we have a wonderful nurse right there ready to help us. I have heard that the nurses upstairs are wonderful, too, and I am sure that I will get to know them all, but I have a comfort level with the CCU staff that is unparalleled.
This morning when I got there, Derek's nurse was laughing and said she and Derek had just had a great conversation. Last night, she was so happy she finally got to take care of him. She had assisted with him, but she was not his nurse until last night. She told me this morning that after some of the doctors left, he turned to her, shaking his head and said, "Why were they yelling at me? My ears are fine. Idiots."
I have noticed that with a lot of people who come into his room to talk to him, visitors, doctors, etc. Not nurses, who seem to know how to handle patients the best, though. They will use a normal voice when talking to me, and then turn and yell at him. Or the best is when they make hand motions to show what they are saying, such as pointing to me and the door when saying they are going to talk to me outside, or putting their hands together and bowing and then pointing at him while saying, "praying for you." Hello - ears and brain working. It's the legs and arm that were hurt.
This morning there was some risidual confusion left from the medications, and then Derek slept all day, but he had a very busy day that could have tired him out. I'm going to go with that and not with the reason he slept all day Saturday and Sunday. Let's wait and see what tomorrow brings. His confusion this morning was wondering where the other guy from his room went. He said he was lying there a minute ago and wanted to know if he left for surgery. He was also convinced that he had checked his bank account and did not see his pay check deposited once Dr. Dan told him it was pay day in response to Derek thinking it was Sept 14th.
Dr. Dan. We like Dr. Dan. I told him I was chaining him in the basement with Dr. Ugo so we wouldn't lose him. But, oh yeah. Derek let Dr. Ugo go. Darn it. That's one reason I wouldn't want to leave CCU. We will lose Dr. Dan, but then his rotation will be up soon anyway. He will have to come visit, and he still owes us that beer at the "Humping Turtle" (a/k/a Harp and Fiddle). Dan wears a green jacket over his scrubs and when he runs down the hall it floats out behind him like a cape - superdoc! We love Dan.
White cell count is down to 16, which is good, and there are no fevers. Secretions were up, and his breathing was labored. One of our favorite RTs, Angela, visited many times today. Every four hours he had to have this vest on that vibrates him hard and helps break up the mucus.
While Angela was there, she was working with him on how to talk without the speaking valve in place. If he holds his finger over the hole of the trach, he can be heard. We were discussing what happens when he goes to the ward and one of us is not with him and he needs the nurse. So Angela showed him how to get his finger over the trach and told him to say something. He was very soft the first couple of times, but then he yelled out, "Help!"
His nurse, Gary, was right outside the door and he rolled his chair to the opening of the door with this look on his face that said, "what the heck in going on in here?"
It reminded me of when Derek and Michael were about 4 and 5 years old and I had them in the mall with me. I was teaching them what to do if they were ever grabbed by a stranger. We were in the elevator alone, and I had them each practice yelling, "you are not my mommy/daddy." When the door opened, Derek decided to yell, "You are not my Mommy!" at the top of his lungs. There stood a security guard. He reached for his radio. I took the boys' hands and said, "good job. That's just what I want you to do if you are ever taken by a stranger. I walked through the mall, praying I would not feel a tap on my shoulder.
Derek received his PIC line today. Hopefully he won't have any more line problems, although the two techs who inserted it didn't thrill me. I watched the procedure to try to keep Derek calm. It occurred during rounds, so I missed part of rounds. Rounds or keeping Derek calm? Easy choice. I caught up with Dr. Dan and some of the other docs on the floor afterwards and they filled me in.
Our favorite OT Sam came and put on an ugly purple shirt. She said she looked for the ugliest purple shirt she could find! We love her! The shirt is specially made to snap down the sides so it will fit over the IVs for when he finally gets out in his wheelchair.
Our favorite PT was by too, but Derek was too tired to get into the chair. She worked out his leg a little and left it for another day. His breathing was just too labored.
The speech therapist Laura was by to work with Derek again and make sure he was still swallowing
The most aggravating part of the day concerned the anesthesia department. Defensive much? Someone came by for a post-op visit and asked if everything went okay yesterday, if there were any concerns, and if there was anything I wouldn't want to happen again. Well, don't ask me a question you don't want answered. I told her that Derek destatted. She asked me what I meant by that, so I told her, to which she responded, "Well, how do you know? Were you there?" When I explained to her that I had been briefed by the doctors and nurses on his case, she became very condescending in her tone and started to say, "well, ma'am, sometimes in the OR, patients . . ." I cut her off and told her that the doctors did a very good job of explaining what had happened, that she had simply asked me what I did not want to happen again and I told her. She turned and left.
When they came to get my consent for anesthesia tomorrow, I told the doctor that I wanted them to be aware of what had occurred yesterday and that Derek has a history of sensitivity to the gas, which may have contributed to the issues. She got her boss who seemed quite upset that the surgeons were blaming anesthesia for the problem. That wasn't my perception at all. They actually told me they had no idea what caused the problem, and I told him that. They did a CT scan, chest x-ray and bronchosocopy, all of which were clear except for the known pneumonia, so they really have no answers except that he had an issue when trying to wake up and we need to watch it in the future.
One of the funniest moments of the day was with Dr. West, who I am still convinced will have me committed before we are through. He told Dr. Perdue and Dr. Bograd that he showed up on Tuesday afternoon to find me standing in the door with my arms crossed and frowning at him over my glasses. He stood there imitating me to the laughter of the other two doctors. It was quite amusing. *shaking my head*
He was not in on Monday when Derek was extremely delusional, and we had been looking for him. He returned to the messages and a very unhappy Mom on Tuesday. "I picked a bad day to go golfing," he laughed. But then it was for a TBI fund raiser, so I might be able to forgive him.... eventually.
During rounds this morning they discussed discontinuing the remeron for sleep and putting him back on seroquel. He had not had as much success on seroquel before. Dr. West went looking for the team and convinced them that remeron was the right path. Dan came in and instead of spinning it in a positive way for himself and saying they discussed it and remeron was the way to go, he was honest and said he was wrong and he was going to defer to the expert. His credibility with me jumped a couple of notches. I appreciate the honesty.
One of the nurses was passing me today in the hall and he yelled at me, "I heard the great news!"
I responded, "That we might be moving to the ward?"
Him - "No! The other great news?"
Me - *confused look*
Him - "You're awesome!"
Me - *blushes*
*rolling eyes* The staff is great. They are not only there for the patients, but for the family as well.
Good night, sleep tight, don't let the nightmares bite!
God bless!
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