Thursday, December 27, 2012

Septic Shock. (Or How We Spent Our Christmas Vacation)

It is the stuff of every parent’s nightmares: standing helplessly, watching your child being worked on feverishly by a team of doctors and nurses as they try to save her life. Unfortunately, that has also been my recent reality.

Maya was released from the hospital on Sunday, December 16th just two days after her most recent procedure, the Percutaneous Trans-hepatic Cholangiogram. So when she developed a fever a few days later, on Wednesday morning, I immediately called her GI team in Cincy. Their instructions were to give Tylenol, get labs drawn, & get down to Cincy that afternoon for clinic hours. Of course, by the time we got to see the doctor, she was acting perfectly normal. But they decided to admit us for observation – and that decision most likely saved Maya’s life.

A few hours into our stay, Maya’s blood pressure began dropping. They tried giving more IV fluids, but her pressure kept going lower – 80s/50s, 70s/40s, etc. At almost two in the morning, the doctors decided that she needed to be moved to Intensive Care. It was there that all hell broke loose. One moment Maya was talking to me, telling me she loved me. Then, as the doctors were doing a procedure to put a deep access arterial line in, she crashed. I heard someone say those awful words, “She stopped breathing,” which were followed by “Call the chaplain for mom.” The room exploded, with people coming out of seemingly nowhere. I was escorted out of the room into a darkened hallway, while people in scrubs and gowns moved back and forth with lightening speed, yelling commands.  

The next few hours were a blur. I remember the PICU doctors and nurses going in and out of the room giving me updates as I stood in shock in the hallway, including the diagnosis of septic shock. I remember crying and feeling terrified, feeling as if my heart was going to come up through my throat. Finally, after a tense three hours, Maya was stabilized. And by stabilized, I mean she was sedated and on a ventilator. She was also on numerous antibiotics, three different kinds of blood pressure medications, steroids, albumin, and a few other things. The only thing left to do was wait to see if all of the medications would work, to see if the infection could be stopped. At that point, I had been awake for almost 24 hours and could barely stand up. I pulled a chair up to the side of her bed and held on to her foot. I looked at her pale skin and all the tubes going in and out of her. I prayed.

The wait stretched out interminably. Thursday. Friday. Saturday. Finally, Sunday morning they believed she was stable enough to breathe on her own without the ventilator. They also finally had her on the right antibiotic after determining that the septic shock was caused by E. coli. Her blood pressures were stable, even without the high doses of blood pressure medication. Her kidneys had started to work again, due in part to the diuretics they gave her. (And in true Maya fashion, she peed out three times the amount that they wanted her to, causing the nurse to have to measure from the catheter every hour.) The sedation meds were turned off. After a few hours, she was responding to simple commands. She squeezed my hand and opened her eyes, but only when I asked her, she pretty much ignored the doctor’s commands. But that’s Maya. Just before noon, the tube was pulled out and she started breathing on her own again.

The next few days were rough. Although in most ways Maya was physically on the mend, the medications and fluids she was given were rough on her body. She was too weak to eat or stand, so special nutrition called TPN had to be started through her IV. She was also going through withdrawal from the sedation meds. She opened some of her presents on Christmas Day, but she had no enthusiasm at all. She wouldn’t talk, wouldn’t smile, and barely made eye contact. It was heartbreaking to watch. But finally, during the evening of Christmas Day, she started perking back up. The gleam came back into her eyes, and her smile lit up my world. That, for me, was the best present. Ever.

Of course, there always has to be bumps in the road. Unfortunately, she started to develop intermittent fevers. At first, the fevers were attributed to withdrawal, but then the coughing fits started. After running a few more tests, it was determined that she had contracted RSV, a common yet serious virus. It is can be fatal for babies and very serious for people like Maya who are immunosuppressed.

As of right now, it looks like Maya and I will be in the hospital for another day or two. We are out of the PICU and on a regular floor. She’s eating and her bubbly personality is definitely shining through again. And although this is certainly not the best way to spend Christmas vacation, I know that it could’ve been much worse. I may be stuck in a hospital, but at least I’m stuck with Maya. For that, I am extremely grateful. And there will forever be a place in my heart for the PICU team who saved my baby and brought her back to me. 

Tuesday, December 4, 2012

Percutaneous Trans-Hepatic Choliangiogram, Anyone?

Maya’s liver enzymes have been elevated for months. We’ve had numerous ultrasounds and lab draws, but the doctors don’t really know what the issue is or if there is really an issue at all. They are concerned that her bile ducts might have some type of blockage. So now the next step is something called a percutaneous trans-hepatic choliangiogram. Say that five times fast, I dare you. If it sounds scary, that’s because it is. At least it is to me. This is yet another procedure that Maya must endure, and it’s scheduled for next week. The procedure is basically an invasive x-ray that requires general anesthesia. They will shoot dye through a needle that they place in her liver and bile ducts to see if there are any blockages. If there’s a problem, they’ll insert a stent. We might be in the hospital for one night, or maybe up to a week. In comparison to the months that we lived there during 2008-2009, this will hopefully be a short stay.

Am I allowed to turn into Stresserella now? Too late, I already have.

She’s actually had this done before, back in 2009. She toddled around for months with bile drainage bag that had to be drained at least once a day. (That was a fun task. Really.)  However, she was only three years old and stayed home with me all the time. Now she’s an active and goofy six year old who goes to school. The fact that she might miss a week of school is seriously going to bum her out. But this is life after a liver transplant. There have been bumps in the road, more surgeries, and weird health scares that have probably given me numerous gray hairs (not that I see them, as I get re-blonded every six weeks). And yet, she is one of the happiest children I have ever seen.

I know, in the larger scheme of things, that we are lucky. I hope this is only going to be a minor blip on the radar screen. To Maya, things like surgery, labs, and ultrasounds are a normal part of life. She’s never known anything different. But that doesn’t make the fear I feel now or the terror I’ll feel as I pace back and forth in the surgery waiting area any easier to deal with. I’m going to try to keep from turning into a blubbering mess of tears and snot as we deal with this hurdle. Maya is a strong little trooper who handles life with a smile on her face (unless you take away her Barbies, then all hell breaks loose), and I’m sure that she’ll bounce back from this as quickly as she usually does. At the very least, I am going to look forward to plenty of cuddle time with her as she recovers, as the day or two after surgery is the only time the child actually stays still for any length of time….

Thursday, November 15, 2012

For a Brave Woman

I lost someone the other day. Someone who I shared a bond with, someone who I connected with through the miracle of organ donation. The person I lost was the woman Maya “shared” a liver with. When Maya received her transplant in 2008, it was an adult liver split into two different segments. Maya got one segment, and the other portion was donated to someone else.  Due to medical privacy laws, we weren’t given much information about the donor liver or the other recipient. That information is exchanged later, if the parties agree to it. Little did I know at the time how much that the other recipient would be a part of our lives. 

A few months after the operation, when we were well on the way to recovery, I was connected with the other recipient. My parents actually met her mother at an event honoring people who have given and received organ transplants. I learned that she had been married for over twenty years and had three children. Our first conversation was full of laughter, some tears, and of course, talk of miracles. During the last few years she and I would talk on the phone, exchange letters and cards. She was always so concerned about Maya’s health and so happy to hear about how well she was doing. Our conversations would give me insight as to what Maya might be going through but couldn’t verbalize due to the fact that she wasn’t even two years old when she got her new liver. We talked about our lives, our children, our husbands, and life before and after transplant. Her insights and advice helped me in ways that no one else could. We used to talk about how lucky it was that the donor liver (a true hero) saved both her and Maya's lives. 

The last time we talked she told me she was having health issues and the doctors weren’t sure what was going on. I told her that I would be thinking about her and would get in touch again soon. But life kept getting in the way, and I didn’t call.

A few days ago, I received a message from her husband that she had lost her battle against liver failure.  I could not believe that this vibrant woman, who had already been through so much, was gone. As I listened to him talk about funeral arrangements, tears streamed down my face. I was so sad for her, sorry for her struggles and devastated for her family. I could not wrap my head or heart around the fact that she was gone.

But through my sadness for them and for her, I started thinking about the good things that she experienced during the last few years. Her husband and children got to spend more time with her. She was able to laugh and hang out with her friends. She was able to make new friends, enjoy more life experiences and get a second chance at living, something that is actually a rare occurrence. I know from our many conversations that she was grateful for all of that, grateful for the transplant that gave her that extra time with her loved ones.

Although I never actually met her face to face, this woman was an inspiration to me. We shared a bond that few people will ever get to experience. I will miss her phone calls and the sound of her laughter. I will miss hearing about the adventures of her kids, who are years older than mine. I will miss getting cards in the mail from her at random times of the year. But I am very grateful for the chance to get to know her, even though it was during one of the most difficult times I’ve ever had in my life. This also served as yet another reminder – don’t take anyone or anything for granted. We never know when, or if, we will be given a chance to let them know how much they mean to us. 

Rest in peace, my friend. You will be missed. 

Wednesday, October 24, 2012

On Running

I’ve recently taken up a form of torture most people call “running.” I did it for a few reasons.

1. I was pissed off one night and was about to go all batshit crazy.
2. Physically, I was getting soft.  
3. I just felt like running (said in my best Forrest Gump voice).

But what started off as a way to get some time alone and get out of the house for a while has morphed into something else entirely. It has turned into an ADDICTION. Now mind you, this will certainly not replace wine as my preferred form of sailing off to my happy place. However, it has certainly enhanced my life in a ways that I could not have predicted even if I was the Long Island Medium. 

During my inaugural run, I barely went a mile before I thought I was going to keel over and die on the pretty tree-lined street in suburbia that was named after all of the trees that were cut down to make way for houses. But I kept going. I pushed myself. I ran another mile before I stopped. I was sweating buckets and my legs felt like they weighed 1000 pounds each, but I also felt GOOD. The next day I could barely walk, but I was okay with that. A few days later I went for another run and it soon turned into a daily occurrence.  About a week or two into it, I realized that I craved my nightly jaunts. After each run, I felt better and better. Then one night after a particularly good run I realized that I had that crazy ubiquitous feeling that I had previously thought was an urban legend - the runner’s high. I will not go so far to say that it makes me happier than wine, BUT it's pretty damn close.

Then I started thinking about doing a few races. And of course, that thought scared the shit out of me, so I registered for one. The night of my first race (just a 5k, I wanted to start small) I was nervous but excited. It was a trail race. There were about a hundred people running it and I didn’t know any of them. When the starting gun went off, I took off at a moderate pace. A few minutes into it I was passing people but people were also passing me. I was okay with that, as I just wanted to keep a comfortable pace, at least at first. But then I got passed by an older gentleman and for some reason it kinda ticked me off. Who the hell did he think he was, passing me? Was I going to let some old man beat me? The thought of that got me to pick up my pace a little and a few minutes later I blew by him. When I got to the finish line and realized I was under my goal time of 30 minutes, I was ecstatic. I was also sweaty and thirsty, but lucky for me this particular race offered runners free beer afterward. (Hey, I have my priorities.)

Last night I ran in another race and I’m planning to do at least two more during the next few months. I’d like to do some 10k runs next year and maybe possibly do a half-marathon. (What can I say? I’m a glutton for punishment.) My body is often sore, but I don’t mind. I’m building muscle. I can feel it and see it! Hamstrings! Calves! Abs! Oh my! Don’t get me wrong; there are times when I’m hitting the pavement (or trail, I like to change it up a bit), that I hit the wall and feel like I can’t go any farther. But those times are getting increasingly shorter and the wall keeps feeling lower. So I power through. Isn’t that what life is all about? Moving forward and powering through? After all, if you stand still for too long, you’re bound to get ran over. 

Friday, October 12, 2012

School Daze

I am not a morning person. Never have been, never will be. I don’t talk to anyone until I’ve had copious amounts of coffee, and even then I’m a little sketchy when attempting to carry on a conversation. I wait until the very last minute to get out of bed, then spend 45 minutes hounding the girls to get dressed, eat their breakfasts, and brush their teeth so we aren’t late for school. However, I seem to have spawned a child who IS a morning person. A very cheerful, singing at the top of her lungs type of morning person. I have no idea where she got this particular affliction. And now that she’s in kindergarten, it’s getting worse. Now when she gets up, she doesn’t just come into my room and crawl in bed to cuddle with me, she is dressed and ready to go, wondering when I’m going to take her to school.  On the first day of school, the child was up and ready to leave at 6am. (School doesn’t start until 9.) And that enthusiasm hasn’t flagged at all.

For years I have been alternating between looking forward to and dreading Maya’s first day of kindergarten. I worried about her immunosuppressed state and about all the germs that she could come into contact with and what that can lead to for her. (Yes, I know living in a bubble isn’t possible. That doesn’t mean I don’t think about it every once in a while anyway.)  Also, that day has always signified the fact that she will no longer be my baby. It was hard enough when Laely went to kindergarten, I didn’t even leave school grounds before I was crying. (And this year when I dropped her off for 3rd grade I’m happy to report that I didn’t cry. AT ALL. So there.) However, on Maya’s first day she was so damn excited that I didn’t want to start bawling and ruin it for her as I walked her up to the school. So I waited until I got to my car. I drove the short distance home, went straight to her room, sat on her bed, and had a nice little breakdown. Then I painted my hallway orange and mowed the lawn. (What? I needed to do SOMETHING and drinking that early in the day is frowned upon.)

Fast forward to mid-October (seriously, where in the gay hell did this year GO?) and all seems well. Both Spawnderellas are happy in school and both are in Girl Scouts. (No, I am not nor will I ever be a Troop mom. No sir. Not gonna happen.) And I’ve found that I enjoy having both girls in school. On the days I’m off work, I find myself being able to sit in relative silence. And by sit I mean do laundry, clean the bathrooms, vacuum, mop, work on schoolwork and write, along with going on 3+ mile runs. (Glutton for punishment, perhaps, but those jaunts do keep the anxiety birdies at bay.)

I’m trying really hard not to focus on how life keeps moving forward at warp speed. Soon we’ll be facing a new year, which will lead to yet another spring and summer…then another school year. Next year, Laely will be in 4th grade and will go to school much earlier than she does now.

I’ll probably just have Maya wake her up.