Monday, July 10, 2017

Good Medical Attention(?)

I have not written in a few weeks. I have not done yoga in 10 days or more. My brother has been in the hospital 2 or 3 weeks now. My anxiety has been extreme. I thought I was just suffering PTSD. I think it's more than that. I bought a ticket to Florida immediately as soon as I got word that he was in intensive care following an emergency surgery. Actually, I didn't know he was in intensive care. I just knew he was in surgery. I had such a bad feeling. I decided this on a very frantic walk: I need to go. And when I got back and picked up my phone, I read that my other sister would fly down the very next day too. I was there two and a half days, and just got back yesterday. Backdrop: He has the same disease as I, and had to have the same major operation as I. Hearing about the complications from afar, with so many questions for the doctor was more than I could handle.
My brother and I at the Salvador Dali museum
Almost ten years ago
As it turns out, they did not complete the first surgery, the colectomy necessary due to hundreds of polyps, as they should have. They did not create the j-pouch because he "had too many blood vessels." Does that sound right to you? Could it be they didn't give themselves enough time - they began the surgery at 11am. Who schedules a major operation so late in the morning? My colectomy at Memorial Sloan Kettering was scheduled so early that it was dark out still when I ran to the hospital to make it in time. And my colectomy (with j-pouch creation) was 8 hours. They operated on my brother 5 hours maybe, and that was it. But they started at 11am and couldn't plan and foresee how long they would need? Had they not done this surgery enough? These were all the questions I was trying to ask my family and brother the night before his surgery: How many times has she done this surgery?

Foolish me. Because I didn't have the courage or heart to put myself out there a 4th time, telling him to keep me in the loop, I hadn't spoken to my half-brother in weeks leading up to the surgery. He has a motorcycle and was busy surfing up until the day before. I had told him from when he called to share the diagnosis that I would help in any way that I could, that this is a very complicated surgery, that if it's not done right it could really screw you up. He didn't hear me. I had asked for the results from a scope and he had never sent them or made contact. I knew he was under lots of stress and things in his personal life. I let it go, because, I thought, I can't force myself and my knowledge on him. I tried to share my concerns with others in the family. A friend of mine even left a voicemail on my brother's cell advising that he talk with his older sister - she has a lot of experience with this. It didn't get through. Then, the night before his surgery, I texted him to wish him well. Then, I learned some very unsettling things. For instance, his surgeon's name, a general surgeon (who has published a paper on colorectal matters, I learned, from my peripheral, frenzied google search. I was desperate for something better for him).

As I had told my brother, I've done the research, heard horrendous stories of complications that affect the rest of your life, and had gone through this - I had had complications and ER visits and long stays in the hospital from such a massive, massive operation. I'm disability now because my system has not calmed down to more normal.

Some comparitive facts: They took out my entire colon. They cut me 8 inches, from above belly button to top of my you know. My brother's colectomy almost 3 weeks ago was done through two small holes on either side of abdomen?

Now this: They didn't create the j-pouch like they were supposed to, so a third surgery was added to his course. They did not do what they said they were going to do.

But then now he just had an emergency surgery - a second major, now emergency, operation in two weeks - last week where he was finally cut 8 inches or so. Why? It dawned on my at 11pm last night: Because he was dying. He had two small holes in his small intestine. He could have gone septic and died. How did the holes get there?

My good friend remembers my surgeon saying to them during my surgery that they had to very careful with my small intestine as they could potentially rupture it. It sounds to me like the general surgeon didn't know what she was doing. When I got the surgeon's name (too late), I was devastated. Even though this was not my decision, I felt either responsible or like screaming. I did not see the one word I was looking for next to it: specialist. But this surgery will affect the rest of his life! I screamed via a small group text. I had been thinking and wishing and asking that he go to Moffitt where my father was worked on and where there is a cancer center - like the hospital I was at - with experts. It made no difference, to no one's fault. I just wasn't in the loop that my brother was deciding from. I don't think anyone really knew the difference between a children's hospital and major cancer center. And besides, I was told, Moffit Cancer Center recommends people younger than 21 to go to All Children's.

"God's got me" was my 18 year old brother's response when I voiced my concerns over the surgeons' experience with this surgery. How many surgeries like this has this doctor done? Lots, was the answer. But I was trying to get a number that I could conceptually compare to the specialists I had interviewed: one at Albany Med and one at MSK. I myself had gone with the one who radiated extraordinary confidence. His response that his patients do not have complications seemed incredible to me. I believed him.

The surgeon seemed nice, my half-brother texted back. Perhaps that was how he had reassured himself, in his young mind. I tried to say what I could, and of course said that I would pray as he had asked me.

Despite his naivety, he is suffering so bravely for a young man so much. He is. I can't say enough and I feel for him - so bad. He is showing amazing strength, courage, and bigger picture mentality. But he is still a child. He doesn't listen to doctor's orders. He has had some of us family members give him a sip when his drink restriction wasn't lifted after even a few days.

I did cuz I couldn't take it - and I reasoned that it was a great sign that they had just taken the NG tube out in front of my eyes. That was improvement. I thought I knew better than their doctors because I have brain and because I was in Memorial Sloan Kettering seeing my expert world-leading surgeon often and getting to ask him questions and hear him as he taught the residents using my body as an example. Because what I was used to seeing on my at one of the world's top cancer center was not what I was seeing for my brother in a children's hospital in Florida. I thought they were going through too many precautions in letting him have water (let the record show, yes, he has been on IV and nutrition pic). They weren't letting him water day 2, they told me, because they were measuring his output and it was too much. Well that problem is since resolved since they took the NG tube out - but day 6 is it : and still he has no water.

I had asked if all the output they had been measuring was from the ostomy and the NG tube - and she said yes. And I said well how often do you do this kind of surgery where the patient comes out with an NG tube - perhaps it is that the NG tube is there and so the green stomach bile that is going out to ostomy but up through NG tube, maybe that is because the NG tube is there (when it shouldn't still be - he had it in for 4 days). And her answer, the resident doctor of the intensive care floor (and thus not a representative of the surgical team) said, was that gravity wouldn't let that happen. Oh, and I told her, my brother has been sneaking drinks all day yesterday and he is ok and wouldn't that have affected his output? And she said perhaps. And then when I asked for reassurance that then maybe soon he would have water, she lied and said yes.

So here's the giveaway that they cut my brother in the first surgery, in my opinion: two weeks prior to the emergency surgery (where he was dying, but they won't say that, right), he had had a colectomy. That's the backdrop.  So, while I was there the other day, this resident doctor was attentively answering all my questions. She offered to show me his x-rays. The one she showed me was from just before his emergency surgery. She showed us how there was black space at the top of the abdominal cavity, which was a black fuzzy horizontal line curving upwards in the middle. That was the top of the cavity, so they could tell air was in there. Then there were black half circles where the top of tunnels, must be the small intestine, were black too with air. I asked questions that led to her showing us the x-ray prior to that on the previous day. She said that it seemed most likely - although it could be from the surgery we did two weeks ago - that the perforations in his small intestine happened in that space of 24 hours. Well, it took me traveling back home after my short visit down there to realize as I went to bed feeling reassured to realize the truth. The previous x-rays were all done with him on his back. Someone else in the family had even asked if we had missed something as the family getting him in and how long he was suffering. Someone else in the family had asked why, the morning x-ray the day of his emergency surgery (two weeks after colectomy), why was that x-ray clear and showing no issues? The reason, the resident doctor in intensive care told me, was because someone thought to x-ray him sitting up. Because he was sitting up they could see the air. Well, gee that isn't really reassuring then - because he was never sat up before either. He was throwing up way more than I had in the hospital. Way, way way more.

And now he is like day 6 and still can't drink water - now not because of sodium levels, which they adjusted intravenously, but because the small intestine could perforate again. In a different place. Why? Because anyone who has had an abdominal surgery is more at danger of perforated intestine. Well, I don't have one and I have had three major abdominal surgeries in 2016. And isn't that a coincidence that you had just pulled out his intestines laparoscopically via two small holes in his abdomen two weeks ago? But she is reassuring me that he only went septic, like shit flowing into his abdominal cavity for a day, for one day. Her support? the x-rays. When the truth is, he was throwing up like crazy for days on end in this recovery and the whole time is bile and then eventually some food was flowing like poison into his abdominal cavity. Are you kidding me?
My brother and I when I was visiting in February,
right around the time of his genetic test.

I couldn't sleep last night. I had flown down to Florida the day after I heard of the emergency surgery. I couldn't possibly stay in NY. I was having physiological anxiety attacks. So I flew down, asked my questions, seemed relieved, flew home, and realized the big "hole" in the fucking story. See, the doctors aren't going to admit - even to themselves - that they nicked his small intestine. So, why in the hell should my brother have the next surgery - the part they didn't complete as scheduled in first surgery - where they, the inept, create the j-pouch that needs to function - and perfectly - for the rest of his long life??? I called my family members and discussed this, and as I went down the chain my conviction was stronger. The most important family member told me I opened their eyes, and that they felt something was wrong too. I learned that everyone feels it too. I told my dad, call Moffitt. You gotta get the specialist. The same thing I was saying to my family just before his surgery when I got the name of the surgeon and googled her. No.

And no, it remains. God, help us to help save my brother's body and life. Now, before it's too late. Family is getting on board, as they have a feeling something may be wrong too. So, the question is: Do we let them do his j-pouch creation? How many has this children's hospital surgeon done?  I went with the guy who only does these kinds of surgeries. You want the guy who has done a lot of them because of all the issues that could arise. And we have already seen some.

My father and I would listen to this song as we drove over the Saint Petersburg bridge to the hospital.