I don't know what classes doctors are required to take in medical school, but if Bedside 101 is not a required course, it should be. And it should be a required refresher course every year for most of them. *shaking my head* I swear. A lot of them have great bedside manner, and when they do, I tell them. I let them know when I think they are wonderful. When they don't, I let them know that too. This one today? He almost hit the floor. I was told next time I need to put my shoulder into it.
Plastics, the anesthesia team, etc. had a meeting to discuss the problem with anesthesia to decide what needed to be done with the blood pressure problem. I had asked to be part of that meeting, but I was never told the time or place. And when they sent the resident to tell us the results, I guess he didn't think it was important for me to hear what happened because he went to anesthesia fogged Derek who didn't have his speaking valve in and the resident didn't wait for me. Krystina and I walked in midway and I told him to rewind to the beginning and begin again. He didn't seem happy with that request. Well, tough.
He started with this complicated tale in doctor-speak that the decision was made (not without input from me it hasn't!!) to do this other procedure called a thoracoepigastric flap (TEF) and it would be done on Friday. I started asking questions and voicing my concerns and his response was, "It's better than amputating the arm."
Excuse me? Oh no you didn't.
I told him that was not an option. The look on Derek's face. He is lucky I didn't hit him. I told him I wanted Dr. Martin. He's on leave. Dr. Howard will be doing the surgery, Dr. Martin's boss. I told him I wanted Dr. Howard, not him. That I would not talk to him again.
I paged Dr. Perdue and he said he would get me Howard. Dr. Howard was there very shortly and answered all of my questions and I let him have it for the amputation comment!
Let's see if I get this. A free flap is where they take a section of skin, tissue, muscle, whatever from one part of the body and attach it to another part of the body. It is a very difficult surgery where they have to attach the tiny little nerves, vessles, etc. There is a failure percentage rate. They cannot do this surgery if the patient requires medication to raise the blood pressure because that restricts the blood vessels and that could a clot.
The TEF is where they make an incision in the abdomen and insert the arm into the slit basically attaching the arm to the abdomen for a period of about three weeks. When the skin, muscle, tissue, whatever they need is now transferred to the arm, they detach what is needed and perform a skin graft on the abdomen. It leaves a handprint scar on the abdomen and the success rate is higher than the free flap. Downside? Range of motion is restricted for three weeks. Downside for Derek? He has pnuemonia and needs chest PT. He has been getting chest PT with a vest that is the best for him and they will not be able to put this on with his arm attached to his side. They have chest PT with this other machine, but he cannot lie on his side or stomach due to the x-fixes in his pelvis that already restrict his range of motion. He also needs his OT and PT on that shoulder and that will have to stop for three weeks. If they wait to do the procedure for two more weeks, the scar tissue and skin will continue to occify (sp?) and calcify and that is not good. Yes, they could cut it away, but that is not recommended.
I discussed this with Dr. Perdue, who I trust, and he thinks it will be okay. This reduced my anxiety somewhat. Somewhat. This is still a terrible decision to have to make. They said they could go in there with the intent to try to do the free flap, and if the BP does it droppy droppy thing, go for the TEF. It doesn't always drop. There have been a few times where it stayed up.
Dr. Perdue thinks the other issues will be okay, so trusting him, we can work around them. But there are still concerns, because it is only a "think" not a "yes, they will be fine." He told me he cannot give me a guarantee.
He also told me Derek is closer to the edge of the forest and not as critical, but he is not out of the stupid woods. I would feel so much better about all of this if he was out of the woods. Anyone got a chainsaw? Maybe since he is closer to the edge it will work this time.
If we wait, and I decided they could cut even though it is not recommended..... Oh I just don't know. I hate making these decisions alone. Derek said whatever I decide is okay. We are meeting again tomorrow to discuss it a little more.
Surgery 31 was today. Just an ortho washout of the arm and changing of the wound vacs. Those ortho guys need Bedside 101. No update. Haven't seen them. I will be on them tomorrow. They need to come see me and give me an update after surgery. Two minutes. Just let me know how it went and what they did.
I liked Derek's anesthesiologist today. Dr. Rodriguez. Nice guy.
There was a little bantering in the PACU between two anesthesiologists this morn (one wearing a Red Sox (a/k/a Beat Sux) cap and one wearing a Yankees cap. I had a nice chat with RS guy. He's taking care of Derek before. Why I trusted him with my kid when he cannot even pick a ball team, I don't know, but he did a good job. He a good guy, anyway. The two of them rolled a patient away together to people commenting about the teams finally being about to work together! The start of world peace!
When I got back to PACU after the surgery I walked in to chaos! Derek was "screaming!" I started really yelling. His IV pole had been left in the OR so he did not have his pain meds. It was being wheeled in with me. There was no order for pain meds. The kid was suffering! He was in tears. I started screaming, "WHY is this kid in so much pain?! WHY is he alone?! WHO is supposed to be taking care of him?! Get me a nurse! Get me a doctor! NOW!" I depressed the bulb on the trach collar and put my finger of the hole so he could talk and he yelled, "My butt!" Then he let me know he was on the wrong part of the bed. The nurse came running all apologic. A doctor came running to enter a pain order. I grabbed the doctor to help me move him while the nurse hooked up the pain meds. We got him situated and within a minute he was A-OK! Dr. Rodriguez ran over all apologetic. I apologized for yelling, and the nurse said she understood because she is a mom.
And the tube feeds have not been going well. Derek's gut is just not functioning. They are giving him gut motility agents, but all of the narcotics are slowing it down. Coupled with the fact that Derek has a history of abdominal problems, this is complicated. The critical aspect is he is not getting enough nutritian. He needs the J-tube replaced. We were hoping to avoid this procedure. It is scheduled for 10:00 tomorrow.
Over the last 61 days, we have had stressful days, semi-calm days and calm days. We have not had many consecutive stressful days, which allows me to decompress. Unfortunately, the last six consecutive days have been high stress. I am dangling by a shoestring. Maybe a thread. Need some calm days.
When Dr. West came by today he said one of these days I'll be yelling at the doctor, he will come up behind me, tap me on the shoulder, I'll turn around to see him with four guys behind him with restraints and the nurse with a syringe and I'll take a little nap. Is it wrong that right now that doesn't sound so bad? My strength is waning a little right now. Come on, Lord, I need a little boost. This Boxstep is tiring. I know you are my dance step, but I'm tired. I need to get out of the hallway and through the next door!
You never know how strong you are until you need it. I've always been strong for my kids. They've only had me to back them up and fight their battles. This battle? Oh goodness.
I was talking to one of the interns tonight. He told me that some of the families are awesome. He said some come and stay and advocate for the wounded warriors through it all, like us. But some fly in and are only there sporatically, taking very little interest, and it has little to do with work or other family obligations, because when they are in the room, they take little interest in the warrior. He said they are only there for themselves. They are selfish and get what they can out of it and do not support the warriors who are going through this. He said Derek is lucky to have us. He then told me how awesome Krystina is and how he has seen so many girls take off, but she is made of strong stout and has what it takes to be there for him. I know it.
That's really it for today. Stressful day for Krystina and me. Derek slept all day. He had a lot of visitors and woke up sporatically for them. Doc Ryan Pleckham and Danny Alvarado (from his Platoon - Doc was injured before him and Danny was there when Derek got hurt), My Dad (who came yesterday) and Ann.
We also got another visit from the awesome Allen family. Chaz is a double amp, so he and his wife, the fabulous Jessica, are awesome resources for us. When the flap questions came up, I called Jessica! Chaz went in and talked to Derek. Hopefully over the next couple of months he can help him.
Anyway, four hours of sleep last night.... need to crash.
Lots of love, thanks for the support, good night, God bless, love you all! Here's to a better day tomorrow! It WILL get better!
Never give in,
Never give up,
Climb to Glory,
To the top,
All the way!