The Discovery of the Larger-Than-Softball-Sized Mass
After Hannah spent several days post-operatively literally screaming in pain and complaining that it was difficult to even breathe due to the swelling of her belly, her white count skyrocketed. She felt as though she had a UTI, but tests were negative. A CT was finally done, revealing a huge fluid collection or abscess or something in her abdomen, indicating that perhaps the doctors should have listened a bit sooner when she said it hurt.
Subsequently, a drain (Mr. Clean) was placed. You can read about it here; it was an interesting experience Hannah hopes to not have to repeat. It was just super weird. After a very painful first night, things seemed to be on the right track.
Hannah is Sent Home
On the day of discharge, it becomes clear that Mr. Clean is going home with Hannah. As there is some care involved with the drain (flushing the tube out with a saline syringe twice a day), Hannah asks the six surgical residents if she needs to continue this care at home. She is assured by six surgical residents that, no, she does not need to do anything at all with the drain. Hannah questions this. She is condescendingly reassured that, no, nothing needs to be done. Hannah asks a third time, not to be rude, but to be certain. She receives the same answer, and is instructed to make a follow up appointment with Dr. A for Tuesday (three days following discharge), at which point he answer any further questions she has about the drain.
Hannah is at Home
Hannah spends all day Monday trying to make the Tuesday appointment with Dr. A. Finally, around 4 pm, the appointment for the following day is confirmed. At 6 pm, Hannah receives a call letting her know that Dr. A has cancelled her appointment; after all, she just got out of the hospital three days ago. Okay... Hannah receives a call from Interventional Radiology, the people who placed the drain, wanting to see how she's faring at home. Hannah says she's fine. IR asks if she's having any trouble flushing the drain. Hannah remarks that she was told not to flush it. IR seems a little uncertain about the wisdom of this. At this point, so does Hannah, so she calls Dr. A's office. Dr. A's office seems aghast that she is not flushing the drain. Hannah also mentions that she was told by the same people to make the Tuesday appointment, and she doesn't want to come in if it's not necessary, but she would like to know what the plan is with the drain. A staff member calls back, confirms that she should flush the drain twice a day and she will give supplies to the GI Dr's nurse, who Hannah will see on Wednesday. Dr. A would like the drain removed next Tuesday, and then for Hannah to see him 2 weeks following.
Hannah Attempts to Procure Supplies for Mr. Clean
Hannah attends GI Clinic and asks GI Dr's nurse for the supplies to flush Mr. Clean. This turns into a huge fiasco, as no one anywhere has documented what needs to be done with Mr. Clean, and Dr. A's office did not, in fact, contact her to let her know that Hannah needed supplies. Poor GI Dr's nurse has to run around and get approval from someone, as no one knows what Hannah is supposed to be doing with Mr. Clean, as it is not documented anywhere. Hannah gets supplies, after a long period of waiting and much hair-pulling by GI Dr's nurse.
Hannah Has Difficulties
So... as you may recall, Hannah's rear end has been permanently sewn shut. In theory. On Thursday, Hannah begins to experience pressure in her abdomen and goes to the bathroom... blood comes out the theoretically sewn shut backside. As Hannah flushes the drain, she experiences the same pressure and the same issue. Monday (today), Hannah calls Dr. A's office. She politely inquires if this is normal. She encounters a nurse who not only does not speak fluent English, but is totally unfamiliar with the surgery Hannah had and Hannah's anatomy and Mr. Clean. The nurse encourages Hannah to go to the ER because of the bleeding she is experiencing. Hannah says, "No, the ER doctor will not know what to do. I need to talk to Dr. A." The nurse says she will relay the message to Dr. A and call back.
Hannah Bangs Her Head Against a Wall (Figuratively)
The nurse calls back a few hours later with questions about the drain. She spoke to Dr. A and neglected, it seems, to ask him about the whole bleeding from the theoretically closed backside issue. This causes Hannah to wonder what the nurse did talk to Dr. A about. Hannah answers the questions about the drain. It seems that Dr. A wants her to cancel the appointment with IR. Dr. A now revealed to the nurse that he doesn't want the drain out until it is draining less than 20 cc a day. Hannah is not sure how this is ever going to happen, since she flushes Mr. Clean with 20 cc a day... so the output is always going to be at least 20 cc. And if that is the case, Hannah also wonders why Dr. cancelled her appointment with him and instructed her to have the drain out this week. Is it bad if her drain is still draining more than 20 cc almost a month after it was placed? The nurse has no answers, but clearly does not have an understanding of what they did to Hannah during surgery. So Hannah tries unsuccessfully to explain. After being asked to loudly repeat three times the embarrassing phrase, "THEY REMOVED MY ANUS" without the nurse comprehending, Hannah requests to speak directly with Dr. A, as this telephone game was clearly not working. The problem remains that Hannah is bleeding out of an orifice she no longer has and she needs to know if this is normal or if it's a problem. The nurse tells her to just watch it and she's sure it's fine. Hannah requests again to speak directly with Dr. A. The nurse finally admits, "I not know the surgery you have. I not know what is the drain you have. I leave message for Ducktah A call you tomorrow."
IR Saves the Day
There is a sort of happy "ending" to this story... Hannah calls IR to cancel her appointment and tells them she has several questions. They immediately have a PA on the line who is equally concerned about the backside issues, but took the time to answer all her questions concerning the drain and was extremely knowledgeable and helpful. She made a plan for the drain (flush with less saline, she will call in a week, Hannah can call at any time with additional questions, whenever the drain output minus whatever is being flushed in equals 20 cc, Mr. Clean can come out). Why can't SHE be Hannah's doctor? Anyways, IR is the hero of the day. But Hannah would STILL like answers about the bleeding thing... She is pretty sure the blood is from the fluid collection/abscess that Mr. Clean is supposed to be draining. But really pretty sure that this should NOT be happening...
~To Be Continued...~
I'm confident that there will be a Part VIII and probably more, as I realized that I do not have enough supplies to keep flushing Mr. Clean indefinitely. So I'll have to acquire more supplies, somehow... I am extremely disappointed with the way communication concerning this surgery and Mr. Clean's care have been handled. No one seems to know what's going on, everyone has a different story, and Dr. A is not doing so hot on communicating with me, but will cancel appointments I have! As a Christian, I want to be gracious and kind and understanding... but at what point do I put my foot down and say, "This is NOT OKAY!" At what point does this miscommunication and phone tag rigmarole become dangerous to me?
Sorry you had to read this whole epic adventure... congratulations to making it to the bottom!