The longest 48
Zoe is currently in the hospital battling her first bout with cholangitis, which is a dangerous liver infection requiring powerful IV antibiotics. We have been fortunate to be out of the hospital and only managing our labs and monthly clinic visits (with other appointments/labs scattered in between all of that) since August. This admission definitely came out of the blue and completely unexpectedly, which served as a reminder that liver disease can only be looked at one way: a day at a time. I think we finally started breathing a bit since she has had such a long stretch of good health. For example, when we first moved here, I would have a bag packed and ready...just in case. Eventually I unpacked it, so when we arrived at Riley I had a list of things we needed that I forgot! I knew emergencies could happen but that worry eventually took its place in the back of my mind instead of the forefront.
To back up on what happened, our New Year started off great! We had a nice progressive dinner with our neighbors, where we did appetizers at one house, the main dinner at ours and dessert at the other! We six adults and our seven children had a great time!
If you live in Fishers, you know the temperature has been frigid and maybe your heating unit isn't keeping up with the cold weather, just like ours. So, when I realized how cold it was in the house, I decided to layer up the boys' beds with blankets, but wanted to make sure Zoe was warm too, so I put a little heater in her room. (It was 55-60 and drafty in the house, and - degrees outside) She woke up repeatedly all night long, and eventually spiked a fever. Our temple thermometer read a high number, so I called Riley as we are supposed to do and they told me to keep a close eye on her. Over the next half hour, the number dropped, but she was still burning up and panting, heart racing. Because the number dropped, we let her sleep with us. I wondered if I burnt her up with the heater in the room. (I know I didn't, but in the middle of the night, anything is possible) By morning time, I called her regular liver doctor and spoke to the nurse and we agreed I would continue to watch her. By mid-morning, I decided to call her pediatrician to get her in to have her ears checked to see if she had an ear infection. There was a lot of back and forth on what to do, but during this time, she spiked another fever (or else our thermometer read it correctly and it just never came down?) and the doctors at Riley decided she should be evaluated. We have to get a different thermometer, because it did the same thing, even with a battery change it read the number and then it dropped over a half-hour back to normal range. Definitely not right.
Riley decided she needed to be admitted for evaluation. I asked begged for a direct admit so we could avoid the ER. They agreed to do it. I was thankful.
Zoe does not like to follow the "Safe Sleep" rules of Riley...
Cholangitis is a dangerous liver infection of the bile ducts. Because the Kasai surgery connects her intestine directly to her liver, there is always the chance bacteria can get to her liver. When this happens, the chance of infection and it spreading to her blood stream and becoming septic and going into septic shock are extremely high and can happen in less than 24 hours. Any fever that reads over 100.4 requires a call, likely an admission for at least 48 hours and precautionary steps to treat cholangitis while determining if it is indeed cholangitis. Scary stuff. My neighbor, who is a 38 year survivor of Biliary Atresia with her native liver, has been an invaluable resource to me. We were in communication the entire time and she was able to describe to me what her bouts of cholangitis have felt and looked like and help me understand more about this liver disease. It can strike out of NOWHERE at ANYTIME. It can happen often or sporadically. It is one of the things that can lead to transplant. I remembered why I was living in a state of anxiety for the first 6 months after being released from the long hospitalization in April!
They determined Zoe probably had an ear infection (so my mommy insticts are back on track after beating myself up for a while for not knowing she was so sick as a newborn) but even that was a "probably" because her ear canals are so small, it's hard to tell. They went ahead and swabbed her for flu and viruses, did a urine colletion by catheter, drew labs/cultures (after a few sticks, they had to get it from her head :( and then attempted for 8 hours to get her IV in, so that she could start meds. Now for the million dollar question...how do you know it is cholangitis or if it is another illness? Any illness can make her liver act up and go haywire, mimicking cholangitis. The answer is that because this is a chronic disease, there is always the chance she will have something...and something else...comorbidity is the word, I think. At one point it was looking like it still could be just ears (all that for an ear infection?! OY!!!!) but ultimately they determined it was cholangitis and ear infection (and later we found out, a respiratory virus) based on her fever spikes, bilirubin jump and intermittent pain...and I'm sure a lot of other stuff I don't remember, but I know those are the important ones. It was a fluke it all happened at the same time.
I told them right away that Zoe is a hard stick. I gently asked if they could get somebody who is very skilled at starting IVs right away to avoid torturing her. I get both sides of this. They have to try. And then they get others on the floor to try. And from other floors to try. But ultimately after 8 hours, an anesthesiologist got it on the first try, which meant that they had to leave the OR they were in or wait til an in-between moment in the OR. I'm told often (and in a loving way of course) that she won't remember any of this. I know that. I also know that on some level it affects her and of course it affects us. Unless you have been through it, it's hard to explain what it does to you. Many people who have experienced it have reached out to me and so I know there is a lot of understanding in this area. I sometimes make my own self feel like I shouldn't talk about it because she won't remember, because she's strong, we're strong and all of that. But let me just say...it sucks. It's frustrating for the nurses who try hard and can't get it, it's torture for Zoe, who doesn't get left alone for more than an hour while there, and it's hell for her parents who remain helpless. I never know whether to let her see me and try to comfort her through it, or to wait til it's over to be her comfort. It just sucks. We arrived at Riley at 1p and by 10p she finally had the IV.
They use different equipment while looking for a vein. My view from 9pm while the nurses searched.
More scans and tests.
Relief came yesterday when they told us they want to get her on a PICC line. She will be on a few weeks of antibiotics to treat cholangitis and this will mean she doesn't have to be poked because to my understanding, they can draw labs and also get IV meds through it. Seth and I will learn how to do it at home, with the support of a home health nurse when we need it. I think Seth and I have earned our honorary nursing degrees,ha. Seth gets an A+ because he does great inserting the nose noodle when we need it and I get a C+ because I cheat and ask my NICU nurse friend to help me. While she is under this morning, she will also undergo the rest of her transplant evaluation, which will be good for a year. Because Zoe is now more aware and active, she tries to rip out the IV, so the PICC line seems like it will be good because we can cover and protect it.
Tonight will be the 48 hour marker on her cultures, so the conditions for discharge are: labs looking good, liver numbers coming down, good intake and output, we parents know how to deal with PICC, and cultures not growing anything. We think she can do it.
Seth brought her toys from home. Her favorite is a bowl.
Update: Seth just got some news that the tests she had yesterday for transplant are showing a hole in her heart between the atria. We don't know if its just a little hole causing a murmur or what, or what the transplant team will say. If for some reason they won't be able to do her transplant here when the time comes, we have Cincinnati Children's Hospital lined up as a back-up and in the case of an emergency for a living donor option. She is also pooping non-stop, through all of the ten outfits I left with Seth! It could be from the antibiotics, but they have to test it. I am hoping and praying it won't become CDIFF. So, it isn't likely we will be out tonight. We will switch after I get the boys to school. I will update on what that all means when we hear from the team when they round.
Once again, it is so hard to be split apart, adjust our schedules and boys' schedules and function while being spread thin and stressed. I wish I could clone myself for the boys' and Zoe's sake. Family and friends always come to our rescue to help maintain as much normalcy as possible with the boys and keeping our every day lives going.
FaceTime lets us stay connected and seeing each other. (Thank you, Apple)
People wearing their new Gift for Zoe shirts lifted my spirits. If enough people show interest, we can open the fundraiser again. 4-5 people have asked me!
I saw something posted today about kids and liver disease and how they function within their "normal." Their normal is probably sometimes a crummy one. She's really strong to battle this without being able to understand what it is.
Seth is super daddy.
Zoe is a little angel.