Timing is Everything

As my daughter waited to be wheeled into the operating room at UVA all the lights started to flicker and the humming of the machines went silent. I knew it couldn't be good. After a couple of seconds most of the equipment came back on but not everything. I looked outside the door by the nurses station and saw them frantically running around. I asked, "What's going on?" The answer...the hospital had lost all power. Oh shit, this couldn't be happening.

We had been there since 11:00am. It was now 5:00pm. My daughter's scheduled surgery kept getting pushed back. She was practically passing out from hunger as were we. None of us had eaten since 8:00pm the night before. I was frantic worrying that her surgery would be cancelled, or worse they'd be underway and then they'd go dark. One of the doctors assured me that wouldn't happen, the operating room ran on a back-up generator and they were proceeding shortly. That was good since she had already been slipped the "happy juice."



Just moments before her surgeon showed me some pictures from her cat scan. In the past I've seen xrays of her bones but the cat scan gave me a whole other perspective. It's an amazing piece of equipment that shows 3-D images complete with tendons, muscles and blood. When I looked at the small portion of her legs that pictures were taken of I was taken aback. I couldn't believe what I was looking at. You've all seen photos of what a "normal" bone looks like. These were not "normal" looking at all. It reminded me of an old tree trunk with gnarly knobs and twisted branches shooting out of it. The surgeon showed me the five tumors they were most concerned with.



Two of them were spike like with pointed edges. Those were the ones that her tendons were getting caught on. Way back in January she couldn't walk for two days because she couldn't straighten her leg out. Now I understood why. There was another huge one almost behind her knee, round but knobby. That was the one that gave her trouble sitting as it would hit the chair. It's gotta be tough to be unable to stand or sit sometimes. There were many, many others but they couldn't go. Her bones would be too weakened or she could suffer nerve damage. As it was the one near her knee was tricky since it was so close to the knee. There was a possibility she would have to be in leg braces. We wouldn't know until after the operation.

After hurry up and waiting all day a new urgency seemed to be happening. The team assembled, we said our goodbyes and off she went. My husband and I went off to get something to eat. We found out no elevators were working and heard people banging on the doors. My worst nightmare would be getting stuck in an elevator. We were only on the second floor so the stairs weren't a problem. We headed to the cafeteria and found they had closed it due to no power. There are plenty of restaurants in Charlottesville so off we went.

When we stepped outside we were shocked to see the state of the city. Last time we were outside was hours ago and it was a hot, sunny day. Now the sky was black, lightning was flashing and it looked like a major storm had come through.



All the construction barriers were being re-set up. Panels of something were on the floor. Tree branches were strewn everywhere. I asked an attendant what had happened and he looked at me like I was crazy. "There was a tornado!" Really????

As we walked down the block sirens blew in the distance, firetrucks were racing, cop cars tried to get through the traffic that was at a standstill. I was in disbelief. We just wanted to get something in our stomach and head back as soon as possible. We ran into two college girls who asked if the hospital had power. I told them no and asked them where the nearest restaurant was. They told us that none of them had power, the city was dark, but to keep walking the way we were and we might find one that was still serving.

We stumbled into the first one we saw. It was a bar-type and crowded. The hostess said we could only drink. They weren't serving food anymore. I told her we hadn't eaten since the night before and if they had anything at all we would really appreciate it. She said we could order a hummus plate at the bar. Thank you. Thank you. Thank you. The bar was black. So was the bartenders attitude. He was practically in panic mode. Didn't these people ever have a black-out before? He was saying how it was like "the Apocalypse" telephone poles were littering the neighborhood, whole trees had been uprooted, yada yada yada. Ok buddy, it's over, you can breathe now. Pour yourself a drink or something. Ooooh, tree branches were knocked down. Let's paralyze the city.



That hummus plate was the worst hummus I have ever eaten, even starving. It came with one carrot stick sliced, one celery stick sliced, 1/3 of a cucumber, and one piece of pita bread cut into 6 triangles. The bartender couldn't add up the bill without his cash register. "It's too dark, I can't see." I whipped out my flashlight. Yes, something told me to take a mini flashlight with me before heading to C'Ville. He wouldn't take it. "My cash register's not working." I could see he was having problems adding up three items, so told him to use his calculator in his cell phone. He was so relieved! Two drinks and the appetizer came to $27.00. We were just price gouged!

We went back to the hospital and were promptly thrown out of the family waiting room. My daughter was the last one getting surgery and they didn't want to keep the room open any longer since it was pretty dark anyway. They told us to wait in the lobby. Luckily I had given the staff my cellphone number so hoped they would contact me directly.

As we were sitting in the lobby I told my husband something smells weird. A little boy next to me pointed to an area and said, "Mommy there's smoke in there." His mother who had been dangling his couple of month old sister upside down for about ten minutes, flipped her rightside up and went to look. "Yeah, there is." She then sat right back down and turned her kid upside down again. My husband and I immediately got up to look. Sure enough there was something going on in there. We promptly went over to the information desk and pointed it out to them. First I took some pictures.



Phone calls were placed and maintenance or security or whatever it was came right over. Apparently it wasn't smoke but steam. Oh, did I mention the central air conditioning no longer was functioning so it was like a sauna in the hospital? Steam was rising from cracks in the floor as well. I began to think we were in Hades. They put a rope across the door to keep the people out of the steam room. We didn't like the smell so decided we would wait outside in the courtyard.

About two hours after she went in the surgeon called me to tell me they were done. "Everything went well, we took out five, minimal bleeding. She's still not up yet. They'll call you when she awakes." Thank God! Now all I had to worry about was her waking up, which is always my biggest fear. What if she doesn't? What if she does but loses some of her mental facilities? I've read horror stories. I always tell her to strike up a good relationship with the anaesthesiologist, as they're the most important member of the team.

It was still another hour before we got the call that she was awake. By then I was practically beside myself. It had never taken that long before. They told me she had been awake a while but they had to recover her in the operating room because of the power problem. We weren't allowed in the operating room so she had to be by herself. The patients were lining up -- there was no way to move them from the OR to recovery to their rooms. I still find it hard to believe that there aren't provisions to have more than one elevator that could fit a bed, work even when there's no power! Actually my husband overheard one of the workers saying they couldn't find the master key to get the elevators up and running on the emergency power grid. No one even knew what it looked like, or where it might be. Sheesh!

After what felt like forever we got the call to say she'd been moved into a holding area and we could go up to see her. She looked great. She was wide awake and cracking jokes. I knew she was fine when she complained that she couldn't get service on her cellphone to text her friends.



Since there were long lines of patients lining the halls waiting to be moved to rooms we were told she probably wouldn't be heading to the pediatric floor which was seven, but we would get a room for her at the short stay unit on this floor when one opened up.

It was 12:30am before she was finally moved into a crappy "short stay" room. Our phones then got service and we saw there was a message waiting from the hospitality hotel my husband was supposed to stay at. Since the only way you could get in was with an electric lock they said he had to be there by 9:00pm or he would be locked out. The locks were not functioning and staff would be gone by 9. Oh well, guess he was staying with me.

Last time I slept in a reclining chair by her bedside. This time I "slept" in a hard plastic chair with no arms. My husband tried to get sleep on the floor. There is a big difference between the nurses and PCA staff who work on the pediatric and the short stay floor. The nurses were okay but nowhere as helpful as the pediatric ones are. They said they never have kids on this floor and I saw many of the rooms were filled with seniors. All I know is that had I not been sitting next to my daughter watching, her health would have been compromised from one of the PCA's.

Early in the morning I had asked her to refill my daughter's cup with ice chips and fresh water. She went over to the sink and poured out the water. The straw slipped out and landed in the sink. The PCA picked up the straw, put it back in the glass, filled it with water from the sink and then went to hand it to my daughter. "Stop!" I yelled. She looked at me. "Are you kidding me? That straw just landed in the sink and you're going to give it to my daughter????" She apologized and threw it out.

A short time later I told her my daughter was able to use the portable bathroom. She put on gloves, dumped out the urine, wiped the seat and then went over to my daughter's table that had her breakfast on it. With the same gloves still on her hands she moved my daughters food and drink closer to her. "Stop!" She looked at me. "Are you freaking kidding me? You just cleaned the toilet, you're still wearing those gloves and now you touched my daughter's food!" She asked if I wanted to have it wiped down with a disinfectant cloth? "No, I want you to fucking throw it out now! Don't you have any protocols? What's the hospital trying to same money on gloves? I don't fucking believe this." I left the room because I was going to smack her.

When I got back my husband said I had shaken her all up. Oh boo hoo. She's one of the reasons people get sick while they stay in the hospital. No wonder there's so many infections especially with old people. If I hadn't been there who knows what my daughter would have picked up. The PCA came in and apologized profusely saying she never does things like that, it's been crazy with no power and all. I would buy that but she just came on in the morning!!!

The final straw came as she tried to make small talk with my daughter, "So what type of sports do you do?" "Uh, none," as she removed the IV port from my daughter's hand. She pulled it out and blood shot everywhere. That never happened before. It freaked the girl out. She apologized, again, and wiped the top of her hand and table and then went to leave. "Where do you think you're going?" She looked at me. "Turn my daughter's hand over." She did. It was filled with blood. "Now clean it." She apologized again. We needed to get the hell out of there and soon.

As I was heading to the desk, the doctors came down the hall and I forgot all about reporting the asshole PCA. One of them showed me pictures on his I-phone of the tumors they had taken. Holy crap. Two were the size of breakfast sausages with points and one the size of a golf ball. Her surgeon told me that she was "this close" to being cancelled. Another five minutes and that would have been it. The operating room was going to be closed all day because of the high humidity in it and the inability to sterilize the equipment. What a freaking nightmare that would have been. I couldn't imagine having to repeat the endless day, nor could she. Who knows when she would have been rescheduled since her doctor only operates on Thursdays and I had booked this back in the winter!

They were all very happy with the surgery and said she only had to wear a brace on the leg that had the tumor near her knee. After three weeks she wouldn't have to wear it any more either. Her doctor was surprised that she had gotten out of bed and took a couple of steps already. He said, "Unfortunately you're a pro at this by now." Yes, yes she is and so is her surgeon and his team. They released her and probably much to the relief of the PCA, we could get out of there quick enough.

Back at home I took off the dressings last night and the wounds look great (fingers crossed they stay that way.) She's already hobbling around on crutches and we're hopeful she'll have a speedy recovery. I can't thank Dr. Romness enough for the wonderful work he and his marvelous team does with these children. I do, however, hope it's the last time we ever need to witness his surgical skills!

I realized that timing was everything for this procedure. Had she had gone into the operating room when she was originally scheduled it would have been early enough for us to be sent home. Chances are we would have gotten stuck in that tornado where it did the most damage on US29 and I64. Had she gone into the operating room five minutes later she would have missed the window of opportunity. Had I not been uncomfortable and wide awake in my daughter's room, or taken the time to slip out to go to the bathroom, my daughter's health could have been compromised by an incompetent PCA. Someone was looking out for us, and I pray they continue to watch over her over the next couple of weeks.

I gotta say for all she's been through, my daughter is one tough cookie. I bet she can't wait to get that straightening iron and eyeliner out again...