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….