So, the Cha Cha of a few steps forward and a few steps back turned into a Boxstep with lots of side steps and some steps forward and some steps back. One day, maybe we'll be doing the Can Can, so for right
now, it's just the Yes We Can!
Nice leaps forward today. 8 liters of fluid were removed from Derek's bloated little body overnight in the SICU. They upped the breathing treatments, increased chest PT, stayed on him with vitals, made sure he was well watched, gave him diuretics to drain those nasty fluids, as well as so much more, and .... it worked! He's down 8 liters! That's FOUR bottles of Diet Coke!
He had been diagnosed yesterday with plural effusion, and although it is not all gone, he is so much improved. The difference in him is amazing.
He had one dip in his stats overnight, but it resolved itself, so that's good. See, SICU was the place for him for the night because with the intense care they got him much improved.
And his white count is . . . (cue drum roll) . . . 5.7!!! Still want it lower, but wow! He sweat it out of him!
Dr. West showed up early today and I came around the corner after getting coffee and charged at him - "Wait! Don't gown up! I have to talk to you first! Follow me!" I took him around the corner and discussed the nightmare from when Derek was first sedated. Amazing how detailed and long it was. After he spoke with him, he came back to us and said, "Wow. You gave me an easy one today." Great! Load off my mind. So, he gave Derek some things to think about and they will go over it tomorrow.
After that we discussed this weekend. Dr. West said he read the notes from Monday and when he saw, "Primary doctor called to bedside; mother concerned," he lowered his head, shook it and said, "Oh, Siobhan. I knew that was an understatement." So I vented about the events of the weekend and how I was ticked at some of the docs, they were on my list and I was taking them out. We discussed them, and then I got a tickle in my throat that caused me to cough. "Oh, I got her all choked up." I seriously love his dry wit.
I told him, "Don't start with me or I'll take you out next!" His response? "Bring it!" as he walked out of the room. Of course, I followed with I would and could take him out in any battle to which there was some comment about that darned retrainted team again. As he walked away, he fist pumped and said, "I'm taking her out!" Okay, you win this round, Dr. West. Don't enjoy it, thought. I don't lose many. And I let you win.
I was told on another day that one of the notes said, "Mother and Fiancee at bedside." I am waiting for the day the notes say, "Mother is a lunatic. Watch out. She takes out doctors!" Heck, I'm only advocating for my kid!
Best advice for today? Keep advocating. DO NOT be bullied by the professionals who obviously know more than you in the medical field (unless you are also medical). Speak up. Ask questions. Go with your gut.
The SICU team thought Derek was doing so well I was told they were transferring him back to the ward. Excellent! I was happy with his progress and ready to go. Then I was told they were having staffing issues so he would not have his 1-to-1 overnight, but he was doing so well he didn't need it anymore. Excuse me? One night means that's over? I asked the doctor if he could guarantee me that he would not have another breathing episode overnight? I asked the doctor if in the event he could not find the call button and needed to be suctioned the nurse would someone have telepathy and know when she was needed. I asked the doctor if now that the tube feeds had started again with the J-tube and in the event he became sick, could he 100% guarantee me that he would not throw up and aspirate. He said there were no guarantees, but did I understand the resistent infections I was exposing him to by leaving him in the SICU overnight.
Infections that can be cured by antibiotics (albiet over a long course of treatment) versus breathing difficulties, aspiration, vomiting, and possible death.... Choice is simple to me. Err on the side of caution.
I told him that I had good veins and to please hook up the IV and start the caffeine drip so that I could stay awake all night and be his NMA (non medical attendant). Over the weekend, the orders had been changed from family could be NMA if they were present to a corpsman had to be present at all times due to his status change. I volunteered to be there tonight if they had staffing problems but that I needed the caffeine drip. He walked out of the room and said they would discuss it.
With that I saw Dr. Bograd. I all but tackled him in the hallway. I asked him what was up with taking away Derek's corpman? He looked confused. He listened to my tale, including the IV drip of caffeine. Then he smiled and said it was his order for the 1-to-1 and it was not going to change. Derek was staying in the ICU until they found a corpsman.
Kudos to Dr. Benjamen Bograd!
We transferred back to the ward around 5:30. I helped push that terribly heavy bed from SICU to 4c and oh my goodness and I sore and hurting tonight!
During the hand off by the nurses, I heard one say to the other, "Mom likes to know everything, so keep her in the loop." Then Capt Summer came and hugged me! She said thank you for being nice to the nurses! She said I take down the doctors and fight them for my son, but I am nice to the nurses! If I have an issue with them, I discuss it and advocate for him so I get my point across, but I have a much stronger approach with the doctors and she loves it! I am leaving my son alone with the nurses all day. I need to be nicer to them. I need to make sure that they will take better care of him, so it's the way you say it and approach it. Doctors seem to have a different attitude about them.
The tube feeds were increased to 50, but the risiduals were a bit high, so they had to keep stopping them. We don't want him sick. They have to stop them at midnight, or rather had to stop them at midnight for surgery tomorrow (today now). That's a whole other issue.
On Monday I was told Derek was having another procedure on Wednesday for the washout, wound vac change, wound check, etc. I heard nothing all day. No one came with the consent. I didn't know time or anything. I had the nurses check and no one knew anything. When the shift change happened, they were told no procedure Wednesday.
At 21:30, ortho walked in with a consent. ??? Poor doc got an earful. I was very upset with the ortho team about lack of communication and waiting to look for consent until so late when we were there all day. No need to wait until that hour! If I had left with the idea that he had no surgery scheduled, I would not have been there for the trip to the PACU at 05:30. He likes me there. That was completely unnecessary. Communication. Heard of it?
You know, I ask people for help with little things and they don't help. Really? Little things that would take some of the stress from me. I just asked Krystina to change into my pjs and brush my teeth while I finish this, and she won't do it! The nerve!
So that's it for now. It's 01:00. In four hours I need to be in the shower to start my day. My stress level is through the roof right now, but the great leaps forward are helping. We are making progress. We will get him there. God will get us through this hallway and through the next door. He just needs to hold me up until we get there because I am slipping!
now, it's just the Yes We Can!
Nice leaps forward today. 8 liters of fluid were removed from Derek's bloated little body overnight in the SICU. They upped the breathing treatments, increased chest PT, stayed on him with vitals, made sure he was well watched, gave him diuretics to drain those nasty fluids, as well as so much more, and .... it worked! He's down 8 liters! That's FOUR bottles of Diet Coke!
He had been diagnosed yesterday with plural effusion, and although it is not all gone, he is so much improved. The difference in him is amazing.
He had one dip in his stats overnight, but it resolved itself, so that's good. See, SICU was the place for him for the night because with the intense care they got him much improved.
And his white count is . . . (cue drum roll) . . . 5.7!!! Still want it lower, but wow! He sweat it out of him!
Dr. West showed up early today and I came around the corner after getting coffee and charged at him - "Wait! Don't gown up! I have to talk to you first! Follow me!" I took him around the corner and discussed the nightmare from when Derek was first sedated. Amazing how detailed and long it was. After he spoke with him, he came back to us and said, "Wow. You gave me an easy one today." Great! Load off my mind. So, he gave Derek some things to think about and they will go over it tomorrow.
After that we discussed this weekend. Dr. West said he read the notes from Monday and when he saw, "Primary doctor called to bedside; mother concerned," he lowered his head, shook it and said, "Oh, Siobhan. I knew that was an understatement." So I vented about the events of the weekend and how I was ticked at some of the docs, they were on my list and I was taking them out. We discussed them, and then I got a tickle in my throat that caused me to cough. "Oh, I got her all choked up." I seriously love his dry wit.
I told him, "Don't start with me or I'll take you out next!" His response? "Bring it!" as he walked out of the room. Of course, I followed with I would and could take him out in any battle to which there was some comment about that darned retrainted team again. As he walked away, he fist pumped and said, "I'm taking her out!" Okay, you win this round, Dr. West. Don't enjoy it, thought. I don't lose many. And I let you win.
I was told on another day that one of the notes said, "Mother and Fiancee at bedside." I am waiting for the day the notes say, "Mother is a lunatic. Watch out. She takes out doctors!" Heck, I'm only advocating for my kid!
Best advice for today? Keep advocating. DO NOT be bullied by the professionals who obviously know more than you in the medical field (unless you are also medical). Speak up. Ask questions. Go with your gut.
The SICU team thought Derek was doing so well I was told they were transferring him back to the ward. Excellent! I was happy with his progress and ready to go. Then I was told they were having staffing issues so he would not have his 1-to-1 overnight, but he was doing so well he didn't need it anymore. Excuse me? One night means that's over? I asked the doctor if he could guarantee me that he would not have another breathing episode overnight? I asked the doctor if in the event he could not find the call button and needed to be suctioned the nurse would someone have telepathy and know when she was needed. I asked the doctor if now that the tube feeds had started again with the J-tube and in the event he became sick, could he 100% guarantee me that he would not throw up and aspirate. He said there were no guarantees, but did I understand the resistent infections I was exposing him to by leaving him in the SICU overnight.
Infections that can be cured by antibiotics (albiet over a long course of treatment) versus breathing difficulties, aspiration, vomiting, and possible death.... Choice is simple to me. Err on the side of caution.
I told him that I had good veins and to please hook up the IV and start the caffeine drip so that I could stay awake all night and be his NMA (non medical attendant). Over the weekend, the orders had been changed from family could be NMA if they were present to a corpsman had to be present at all times due to his status change. I volunteered to be there tonight if they had staffing problems but that I needed the caffeine drip. He walked out of the room and said they would discuss it.
With that I saw Dr. Bograd. I all but tackled him in the hallway. I asked him what was up with taking away Derek's corpman? He looked confused. He listened to my tale, including the IV drip of caffeine. Then he smiled and said it was his order for the 1-to-1 and it was not going to change. Derek was staying in the ICU until they found a corpsman.
Kudos to Dr. Benjamen Bograd!
We transferred back to the ward around 5:30. I helped push that terribly heavy bed from SICU to 4c and oh my goodness and I sore and hurting tonight!
During the hand off by the nurses, I heard one say to the other, "Mom likes to know everything, so keep her in the loop." Then Capt Summer came and hugged me! She said thank you for being nice to the nurses! She said I take down the doctors and fight them for my son, but I am nice to the nurses! If I have an issue with them, I discuss it and advocate for him so I get my point across, but I have a much stronger approach with the doctors and she loves it! I am leaving my son alone with the nurses all day. I need to be nicer to them. I need to make sure that they will take better care of him, so it's the way you say it and approach it. Doctors seem to have a different attitude about them.
The tube feeds were increased to 50, but the risiduals were a bit high, so they had to keep stopping them. We don't want him sick. They have to stop them at midnight, or rather had to stop them at midnight for surgery tomorrow (today now). That's a whole other issue.
On Monday I was told Derek was having another procedure on Wednesday for the washout, wound vac change, wound check, etc. I heard nothing all day. No one came with the consent. I didn't know time or anything. I had the nurses check and no one knew anything. When the shift change happened, they were told no procedure Wednesday.
At 21:30, ortho walked in with a consent. ??? Poor doc got an earful. I was very upset with the ortho team about lack of communication and waiting to look for consent until so late when we were there all day. No need to wait until that hour! If I had left with the idea that he had no surgery scheduled, I would not have been there for the trip to the PACU at 05:30. He likes me there. That was completely unnecessary. Communication. Heard of it?
You know, I ask people for help with little things and they don't help. Really? Little things that would take some of the stress from me. I just asked Krystina to change into my pjs and brush my teeth while I finish this, and she won't do it! The nerve!
So that's it for now. It's 01:00. In four hours I need to be in the shower to start my day. My stress level is through the roof right now, but the great leaps forward are helping. We are making progress. We will get him there. God will get us through this hallway and through the next door. He just needs to hold me up until we get there because I am slipping!
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