This morning I am waiting for home health to call me back. The part that we have to twist Zoe's antibiotics onto came OFF this morning. Poor Seth feels awful. He twisted it on so tight, I couldn't get it off, and then HE couldn't get it off, so we had to use pliers and then the WRONG part came off. Little did Seth know, that in his lifetime he would become an honorary nurse! It seems easy enough to put on another connector piece, but we are waiting to see what they want us to do. I was going to cover it up, but I am afraid it will draw more attention to it and she will mess with it or chew it, introducing even more germs. So, she's sleeping now, and I am waiting. They usually do all of those changes while they have masks on and try to make it sterile. I am trying not to freak out about it. The longer she has the PICC, the more risk there is for infection, so I just want to have it taken care of ASAP.
Speaking of the PICC, yesterday was supposed to be our last day on this course of antibiotics, BUT they decided that since her labs have been all over, they want one more week before they stop and then potentially pull it. I am super nervous for when they pull it, because we have no idea if she will turn around and get cholangitis again, but it has to be done. I guess if she does, that would bump her up on the list for transplant. The nurse that called me told me that the doctor said she would call me if I wanted to talk to her, which I appreciated. It is those little things that make this journey more bearable sometimes. A doctor being willing to take time out of a busy schedule to call, or to spend time talking to me in the room means a lot. As you can imagine, the back-and-forth communication can be frustrating at times and there is a lot to keep track of with appointments, labs, meds, pharmacy, home health, insurance, and time in the hospital. (And that's just for Zoe, the boys have their own appointments and such, too!) (oh, and Seth and I, too!) I sometimes wonder if what I say gets relayed in the same way that I say it, or what gets lost in translation. (I am probably hyper-cognizant of this because of being an interpreter and paying such close attention to how people communicate)
I know there is a certain way things have to be done, and understand the protocols and processes and procedures, but when somebody makes time in a way that makes us seem less like patients and more like mother/father/daughter/family navigating a sucky situation (to be articulate) it makes a big difference. One time when we were at the hospital for a Vitamin K injection, I asked if her ears could be looked at, because I was worried about an ear infection. The initial response was "no, that is something you have to see the pediatrician for." I was disheartened at first because there was an otoscope right there! But, the logical part of me also understands that the pediatrician should be the one to check and treat it and not gastro/hep, and also insurance gets billed for what you see the doctor for. At that point I just wanted to know if I would have to MAKE an appointment with the pedatrician to have it treated. In the end, they did end up looking in her ears for me, and she didn't appear to have one, so as it turned out, it saved me the trip of another appointment and it was MUCH appreciated. Another example is when Brody DID have an ear infection around Thanksgiving when we were all sick. I had to take Zoe with me to the pediatrician and asked if they could just go ahead and look in her ears, just in case. Even though we were there for Brody and insurance was being billed only for Brody; and they technically are supposed to treat and bill insurance for whatever is discussed in the room, they still looked at Zoe's ears and I appreciated it. I am a rule follower, but I appreciate the grey area.
One time, we had to return to Riley the day after being discharged. This was right in the middle of trying to get ready to move and going through her first surgery. When I got into the room, the nurse did something totally unexpected. Instead of just jumping to the admission questions, she said, "What do you need from me? Do you need to scream? Cry? Vent?" She could probably see all over my face what a mess I was. (The downside of wearing your heart on your sleeve is that it's impossible to hide emotions) Without knowing it, she was completely validating my feelings on how awful it was to be discharged, only to have to turn around and be readmitted. Just that little thing she did made yet another night in the hospital bearable. I have also experienced some of what I would consider "opposite" of what I have described above, but I don't think it's necessary to share the details of those parts.
I think in any field it is easy to become detached and desensitized, and treat work as just work. I can imagine in the medical field it is even more necessary. I think my point is just that for a family going through a medical situation, good boundaries on both ends, with good communication are important. Medical staff put in long hours, nurses are overworked, hospitals can be treated like hotels by some people...families are stressed, tired, worried, emotional...just so much going on at once, all intersecting at each interaction and it happens 24/7 in a hospital!
I am touched by all of the sharing of Zoe's story. As I have said, I have been hesitant on how much to share about this and us, but I am actually an over-sharer I think in general. She is a gift to us. Did you know she was a HUGE SURPRISE? Seth and I talked last night about how this has changed us. One of the ways is in the feeling of wanting to pay forward the kindness that has been shown to us. For me especially, this has been lonely at times in a lot of ways. It can be hard to feel helpless, split, questioning myself as a mother, seeing life go on while I am trapped in a hospital room (when I am), knowing that relationships can change when people go through hardships for different reasons. At different times I have tried to minimize it to myself knowing that there are many others who have it worse off, or that we should just be thankful to have this gift of a baby, when there are others out there who try and try and cannot have children. I guess we all have our unique situations and they are all relative. Paying it (whatever "it' is) forward is just a little way to always keep hope and to keep looking forward, not dwelling on the hard parts of it all. And, one day it will all just be a story we tell and Zoe will go on to live a normal happy life...that's what we hope and pray for!
One quick funny thing: When we were interviewed for Zoe's story on the news, the person interviewing asked us if we had any final thoughts or things to say. Before I could complete my thought on organ donation, our dog Leni (who was sitting nearby) started gagging and puked everywhere! I joked, "well that pretty much sums it up!" Fortunately that clip didn't make it in. Another silly thing is that he asked us to count to ten to make sure the sound was working. We have this baby toy that counts to ten in a really sing-songy way and it was tempting to count like the toy does for the test...sometimes we just bust out singing that counting song at home. I like and have always liked the silly and funny moments to lighten tough situations.
Sometimes I think that other events in my life were preparing me for this life event. I wonder if anyone else feels that way? Just one silly example is that prior to becoming an interpreter, I worked in a pharmacy for ten years. Another is prior to finding out I was pregnant with Zoe, I took all of the nursing prerequisites to apply. Interpreting has given me a little knowledge of a lot of things. I think all of that has helped me navigate this situation.
So....to wrap this up, Zoe is still yellow and her eyes look the same, if not slightly worse to us. Her labs will be drawn tomorrow and we'll see what the week brings.
While thinking of Zoe, please keep another little guy in your thoughts that I've mentioned previously. He is in the hospital again right now fighting another liver infection.
From the bottom of our hearts, thank you for the support and for caring about us and Zoe.
(And thank you for reading this long rambling post if you made it this long!!!! I would put something like this in my personal blog, but that is on hold for now)
Last thing. We had to reschedule Zoe's First Steps evaluation for this week because last week was hectic. We are going to be working on gross motor. Here is a video of her trying to crawl. I'm hoping to work on that and getting her to bear weight on her feet! Her belly is probably most of her body weight, and her arms and legs are so short they can't get her up and off the ground. Bless her little heart, she tries! (And then usually tires out)