Wednesday, December 19, 2012

No more leaky brain

A week ago yesterday I was feeling anxious. We went to see Kieran perform "London Is London" on the mainstage at Northwest Children's Theater. My parents took the kids home after the show, since I needed to be at the hospital at 6:30 a.m. the next day. I found myself feeling emotional when saying goodbye to the kids, as I thought about the risks of brain surgery (stroke or brain bleeds, for example). Although I knew I would probably come through the surgery fine, I did have a small fear that I would never see my kids again. That night I packed my bags and had my first shower with Hibiclens, a pre-surgery antibacterial wash agent. (I took the second shower the next morning.)

Day of surgery
When we arrived at the hospital on Wednesday morning, we were shown into a small room where we spent most of the morning. I was taken in for a head CT and MRI around 8:30 a.m., and the surgery was scheduled for 11:30. My ear surgeon came in to see me around 11 and told me that the neurosurgeon was still in surgery. He also asked me why I didn't have any fiducials on my head. When I had the MRI done earlier that morning, I asked the technicians about them, but they told me that they were not in the order. Someone had made a mistake. The nurse apologized for the error and told me they would figure out what had happened. And we waited.

I kept remembering this image when I felt nervous
What seemed like several hours passed. The neurosurgeon got out of surgery and was not happy that I still did not have fiducials. Mike overheard him telling someone outside the room that the imaging team needed to take care of this immediately. Apparently they were holding up the operating room, waiting for me. I'm not sure what was taking so long. Finally, the fiducials guy came to apply them to my head. Earlier that morning the nurse had told me that I needed to make sure everyone washed their hands when they came into my room, even if they said they'd washed their hands right before coming into the room. This guy would be putting stuff on my head, where they would be cutting. He was very defensive about not wanting to wash his hands again, but I insisted he do it. This was the first of many examples of processes that were inconsistent throughout the hospital...typical of large organizations, I realize. 

They did the repeat head CT (fortunately I didn't have to have the MRI redone, which would have taken a lot longer), and the technician was taking her time moving me back to the room. She started setting up for the next patient, telling me that she was helping out her coworker. "I think they urgently need me back in the surgery area," I told her..."The surgeon says they're holding up the OR." She didn't seem to be in much of a hurry!

Finally, it was time for surgery. I do not have any recollection, now, of saying goodbye to Mike or going under anesthesia. I vaguely remember the anesthesiologist injecting a sedative into my IV, but that's it.

Fixing the leaky brain and cauliflower ear
I'm not going to put a photo of a cholesteatoma on my blog, but you can google it if you want to see what they look like. I am choosing to imagine it looking like a cauliflower that is taking over my ear. (Cauliflower is not my favorite vegetable; can you tell?) 

The surgery took 6-1/2 hours, and it was more extensive than they expected. The hole between my brain and my ear (near the dura) was larger than they thought, and it was repaired with bone from elsewhere in my skull in addition to a metal plate and screws. (I was not aware of the metal plate and many other such details before surgery.) The worst news was that the cholesteatoma had grown back since the August surgery and was "substantial." Mike thought they said it was 9 millimeters, but a few days later my ear surgeon said it was actually 5 or 6 millimeters. I can't help but wonder whether the aggressive growth was because the surgery was delayed by so long. (And of course I remembered the neurosurgeon suggesting that I could even wait until 2013 to have the surgery done. Just imagine how much it would have grown by then.) 

I react weirdly to certain medications
My worst memory was when I arrived in the ICU after surgery, in excruciating pain. The nurses gave me Dilaudid, which is apparently effective for moderate to severe pain. (It's a derivative of morphine.) Dilaudid is similar to heroin in that produces euphoria, stress relief, and feelings of inner warmth. Well, it did not do this for me! It did not give me any pain relief at all. I was crying because of the pain, and my blood pressure soon went through the roof. After they gave me the maximum dosage allowed, they realized it wasn't working for me. Finally they put me on oxycodone and morphine, which got my pain under control. According to Mike, I said "Morphine is my friend" that evening, which I find more than a bit scary!! I was on morphine for only a few days. 

By Friday I was feeling some shortness of breath, so I had a chest x-ray and leg ultrasound (to make sure I didn't have deep vein thrombosis) and then they reduced the oxycodone dosage a bit. I had some nausea in the hospital (which could be either from the medications or the surgery itself), so I also had anti-nausea medication (the first one they tried didn't work either). Fortunately I'm not allergic to any medications, but they don't always work for when I had an epidural for my c-section with Kieran, and I felt the pain. When I asked if they could give me anything to help me sleep, the nurse said all they had orders for was Benadryl. That would have been a disaster, because Benadryl makes me wired instead of sleepy.

It's tough having two surgeons
I had asked Mike to take notes when the surgeons spoke to him after the surgery. He attempted to do so, but they told him not to "get caught up in the details"! They said it wasn't a long surgery and it went well (even though my condition was clearly worse than what they expected). I suppose brain and ear surgery goes well if the patient doesn't have a stroke or brain bleed, or their facial muscles are not paralyzed. 

Throughout the hospital stay (and before, of course), I found it difficult to have two surgeons. My ear surgeon had told me that I would be in the ICU for one day, followed by two days in the regular ward. In the end, I was in the ICU for three and in the main surgery unit for two. Both surgeons came in to see me together on Thursday evening, and I thought that they would give me an overview of how the surgery had gone. However, they would not have told me anything about the surgery if I hadn't asked questions. They seemed so anxious to leave (it was after 5:00 p.m.). When I asked about the next surgery, I didn't get much information either. My friend Kacey, who is a nurse on the surgical floor, says that we need female neurosurgeons. I am a detail-oriented person and I need information. 

The next few days both surgeons returned individually and I felt a little better about them. I think the bottom line is that the neurosurgeon is king of the operating room and hospital, so his decisions ruled. I didn't realize that going into the surgery; I expected that my ear surgeon would be my primary surgeon because it's an ear tumor. 

Also, Kacey had told my neurosurgeon that I had major problems with his office staff, and he came in to ask me what had happened. I shared some of what had happened, and he apologized. He also did say that he thinks there might have been confusion about who was in charge of scheduling (WHICH IS A LOAD OF CRAP), but at least he knows some of what happened. I still plan to give him my written summary of the problems I had. I'm not looking forward to seeing his assistant when I go in for my post-op appointment.

The ICU is not restful
The nurses in the ICU were amazing, and I felt very well taken care of. I had a lumbar drain in my back to drain off spinal fluid, and I had to stay in the ICU until that was removed. Each time I got up to go to the bathroom I had to have a nurse help me move. They managed the pain well, which was a relief for me. The most difficult thing about the ICU is the noise. The rooms have sliding glass doors and windows, and they are not well insulated. Each night I could hear nurses talking loudly in the hallway. The last night I was there they had a procedure next door, which went until 1:00 a.m. I stayed awake, watching my DVDs, until it was over. Getting a good night's sleep was the #1 reason I wanted to leave the ICU. Most ICU patients probably don't hear or mind the noise, but I did. Mike said I was the perkiest ICU patient ever.

I have small veins
My veins are so small that I am not allowed to donate blood. (They wouldn't want my blood anyway, because I've spent more than 3 months total in the UK since 1990 EVEN THOUGH I DON'T EAT BEEF! I couldn't donate cord blood either.) I always warn phlebotomists or nurses of this and ask them to use a butterfly needle. I had two IVs in my arms for the surgery, and they used them both for medication and IV fluids. (That was in addition to the drain in my back.) Both IVs stopped working, and the ICU nurse attempted to put in another. She failed, so she called the IV team. 

Later that evening a young nurse arrived to try to place a new IV. She had to jab me six times until she was successful. She ended up putting one on the inside of my elbow, not an ideal place, using a very small gauge. She looked like she was going to cry, and I felt so bad for her (even though I was also feeling miserable about all the punctures). I still have several hematomas on my arms from the attempted and real IVs.

Family-centered care is still evolving
Mike and I served on the Emanuel NICU Family Advisory Board for several years, advising the staff and hospital on how to approach medical care in a more family-centered way. Our work on the Family Advisory Board was what prompted our group of parents to help found the nonprofit, Precious Beginnings: Parents Supporting Parents of Critically Ill Newborns. We have high expectations of family-centered care for children, but we didn't really think about how it applied to me.

Before the surgery, I had received an ICU brochure that said that no children under 12 were allowed to visit. I told the pre-surg nurse that this would be difficult for me because I had two children under 12. (At that time I thought I would be in the ICU only one night, remember.) The first couple of days after surgery were tough, and I wasn't ready to have visitors (especially those of small stature and loud voice). But then on Friday, Adam Lanza burst into a Connecticut school and killed 20 children and 6 adults. This happened just a few days after the shooting rampage in a mall only 1/2 hour from our house (the day before my surgery). As friends were posting on Facebook that they wanted to go get their kids from school and hug them tight, I felt desperate to see my kids. I asked my nurse if they ever made any exceptions, and she told me that the under-12 policy was abolished. Now it's up to the patient's nurse to decide. She said that of course, my kids could come see me, and that they have not really adequately updated policies or staff with the new, more family-friendly rules. So Friday evening, the day that the nation mourned, I got to hug my kids (after Mike brought them into the unit past a frowning secretary who clearly had not received the memo!). Priceless.

Facebook can be a balm for the soul  
Mike's laughing now, because on Thursday morning I was feeling so crappy I told him he could take my computer home with him. I didn't feel up to watching any DVDs. So he did. Then he got a phone call from me later, asking him to bring it back. I had been watching the hospital's cable channels and was dreadfully bored from the horrible old sitcoms. He knew I was feeling better. 

He brought my computer in that evening and I hooked it up. Imagine my joy when I discovered that the ICU had wi-fi! Cell phones are banned in the ICU and for some reason I thought that wi-fi was banned too. I was delighted to be able to go on Facebook and read the hordes of messages from friends and family. They cheered me up so much! Facebook can be silly and trite, of course, but it can also be incredibly encouraging and uplifting. 

Mike is so much nicer than me
Yes, I'm recovering from brain/ear surgery and not at my best, but this applies to when I'm healthy too. I found a few people--one of my nurses and one of the hospital housekeepers--to be taxing and wear out my energy. The housekeeper kept making comments about Nicholas' ballpoint penned face and also mentioned that the kids in the Connecticut shooting were Nicholas' age (I wasn't happy about that, because we are not telling Nicholas about the school shooting). She was loud and very talkative, and she clearly took a shine to Mike. She seemed to linger long after she'd cleaned my room. Mike made a comment about not wanting to have all the kids visit because they are loud (thinking that she would take a hint), but it didn't do any good. I just wanted her to leave. This also happened with one of my male nurses, who had a conversation with Mike and who I just wanted to leave my room. I'm so mean.

Small blessings bring great joy.
Receiving beautiful Christmas flowers and a Build-a-Bear signed by Nicholas' kindergarten class...hugging my kids...being able to wear my own pajamas (I had two beautiful pairs for the hospital, one from Nadine and one from my friends Catherine and Kristin)...walking around the unit and stretching my legs...having my IVs removed...being able to wear contact lenses (my glasses got stretched out from being worn over my bandages the first few days)...getting my spinal drain removed and being able to move about independently...eating healthy food (the hospital had very healthy food, although I was tired of the menu selections by the time I left)...receiving e-mails and Facebook messages from so many people, telling me they are praying and thinking positive thoughts for me. 

One day when I was in the hospital, I realized how relieved I was to have this brain surgery over and done with. Yes, I still have to have another ear surgery. Possibly more than one, depending on what happens. I also realize that I could lose the hearing in my left ear as a result of this aggressive cauliflower thing. If it keeps growing back, eventually the surgeon might recommend a radical surgery that hollows out my ear bones. But I'm hopeful that I've passed the highest and most dangerous hurdle (or speed bump, as my ear surgeon called it). It's unlikely that I'll have to have brain surgery again. I just have to hope and pray that some day soon the cholesteatoma will be fixed and gone. 

Hospital visits from family:
(Somehow I didn't get a photo of Chris when he visited--he wasn't there as frequently because he's still in school, but he did visit.)

I wish I could blame my aging memory problems on my leaky brain. My previous memory problems are nothing compared to my mushy, pain-med-addled brain at the moment!

The pain meds are pretty effective, but I'm looking forward to getting off them so I can think more clearly and be less groggy!


  1. I'm so glad you shared this. Your morphine brain must be doing okay for you to pull this post off. :)
    I'm glad you are home and getting ready for the holidays with your Gosling movie. ICUs are not very good places to get well in, that's for sure. Ellen

  2. Thanks, Ellen. It took me a long time to write!! :)

    I was not that thrilled with the Gosling movie, actually...I think I'm ultra picky at the moment.