Continued from last week.(actually, two weeks ago!)
I brought Anna early in the morning, on February 6th, to Children's Memorial Hospital. After her being very irritable all night, neither of us got any sleep. Our home health care nurse was supposed to come, but I didn't even think about that until we got to the hospital. I woke Jason up as I was leaving. I had to tell him that we were off to the hospital, that I thought there was something more going on with Anna. I think it was still dark by the time we left. Jason had to leave early that morning too, to go to a meeting for work, but he would bring Mary with him. I don't think either of us thought this would be anything more than an ER visit, maybe an over night thing.
Since Anna still had a few days left for her IV antibiotics I had started her dose that was due at this time right before we left, figuring we would arrive just as it was done infusing. We arrived at Children's in the ER, and got a bed right away. They flushed her line, and cleaned the area since that was what our nurse was going to do when she came. We saw some doctors, but didn't' get a room until Anna's doctors came in to tell us that they thought her cholangitis was recurring, and she was to be admitted to start some stronger meds. Dr. Emerick described this as we needed a bigger hose to fight the fire.
I didn't call Jason until we got a bed on the liver floor. I was very upset at this point. I had noticed that Anna's breathing was labored, and we were having trouble getting a doctor in our room since they were already on their rounds. I knew that something wasn't right about the way she was breathing. Jason asked me to calm down, we were in the hospital so she will be looked after. I got the head nurse in the room and she got the doctor for me. I don't even remember his name, but he was working with the liver team at the time. I was holding Anna, and he took one look at her and walked out. I thought he was being rude, but he came back with Dr. Emerick, who agreed that they needed someone from the PICU. At this point I was hysterical ( and am now just thinking of the way I felt at the time), and Dr. Emerick (who has the best bedside manner, ever) tried to explain to me that Anna would probably need to be sent down to the PICU for closer observation. I called Jason and told him what was going on. I don't know how he even understood what I was saying. Looking at my yellow baby having trouble breathing with her belly so swollen that her belly button was sticking out the way that a pregnant woman's would, knowing that she needed intensive care, I was very upset. And to make matters worse, as I was talking to Jason on the phone, blood started pouring out of Anna's picc line. At first I had no idea where this blood was coming from. I asked Jason to get here as fast as possible, hung up with him and called the nurse in. I don't remember why her line was bleeding like that. I started to defend myself by telling them that the last person to take care of her line was the staff down in the ER. They weren't trying to blame me, but at that the time I was wanting to point blame at someone. The nurse fixed the problem (I still have no idea what went wrong with that) and the PICU team came up to get Anna.
I followed Anna in her bed, behind the staff, feeling like a lost puppy. I was covered in blood. They were still trying to get me some scrubs. They were working fast with Anna once we made it to her room, and I couldn't see past them. I was still waiting outside of the room. Jason arrived. He left work after we hung up earlier, right away. I don't know what he did with Mary, but she wasn't there and I was glad because she would have freaked out. Jason looked at me with horror. Like, why are we here? What is going on? Why are you covered in blood? Soon after Jason arrived, they came out of the room and explained to us that Anna needed help breathing, and they needed to intubate her. We couldn't believe this was happening now. Of course we signed the consent. We were kicked out during the intubation, into the waiting area. They finally got scrubs for me, so I went in the bathroom to change. I just threw my blood stained clothes is the garbage. When we were called back into the room everything was done. Anna was laying peacefully in her bed, we met her nurse who explained some things to us like how Anna had to be sedated, and the many pumps and lines. I can't begin to explain how this felt. Everything happened so fast, we had so many questions and we had so much thrown at us all at once. There we were, sitting in the PICU, looking at each other in disbelief.
Jason had some pictures of Anna with him that our home health nurse had with her that morning. That's when I remembered, that I hadn't remembered she was coming that day. She had pictures of Anna, and she gave them to Jason as he was just leaving to go to work. I hung the pictures of Anna up on her bed. I remember showing the nurse the pictures so that she knew what Anna looked like without the tube down her throat, and taped to her mouth.
I honestly don't remember that whole rest of the day. I know we had many discussions with doctors, and nurses and a social workers. Jason left to go home later that night to get me some stuff from home, and I went to his parents house to sleep. It was nice that they lived close to the hospital so that I didn't have to worry about the morning traffic from the suburbs, and didn't have to sleep in the waiting room, or stay up all night in the PICU. Jason got back to his parents house very late.
[Wait, now I remember, Jason's dad dropped Jason's mom off at my house to take care of Mary while Jason was at work.]
It was very late at that point, and I couldn't sleep. I was up in the living room "watching" TV. He came back with a pair of cell phones. He thought now, at this point, we would need them. He was right. I needed to be able to reach him in case anything more drastic were to happen with Anna's condition, and if I weren't there, and the doctors needed to call me.
We got to the hospital very early the next morning. I thought we walked into the wrong room. Anna was very swollen. All over the place. This scarred the crap out of us. We had no idea why, or what was going on there. It had something to do with the sedation medication it think. I was crying, she didn't look like the same baby. Not our baby. We talked to the doctors at rounds that morning, and mentioned something about putting Anna on the transplant list. I don't remember if they were asking our permission, or if they had already done it. Later that day we were told she was on the list, but not status 1 because of her unstable condition. Maybe it was that she was on the inactive list. [I have forgotten a lot of this stuff so forgive me for all of my "I can't remember" stuff] Then someone said something about maybe considering looking into living donor transplantation.
I remember when we were first told that they had a good living donation program. It was way before all of this. Maybe after her Kasai? I remember thinking that there was no way I would want to be tested first. I hoped that they would ask Jason to be tested, and that he would be a perfect match. I am embarrassed about thinking that now, but it's the truth. I hoped that it wouldn't be me.
As soon as I heard them mention that now, after Anna being in the PICU for only 1 day, I had this feeling come over me. I knew it would be me, I was ready and very willing. I was at peace with it, I didn't like to see my baby in this condition. I was ready to do whatever it would take to make her better. I knew my blood type, and I asked the nurse what Anna's was. The same. That was it, It would be me. I just knew it!
Of course, it wasn't that easy, but it gave us hope. Anna was in no condition for a transplant right then. Things needed to be set up between Children's and Northwestern (they don't do living donation in Chicago at the same hospitals) We learned that Anna was septic, the cholangitis infection had spread through her blood stream. We had to put this wild fire out, with a huge hose.
Next week: The month leading up to Anna's transplant. I hope to have her transplant story up by her 4 year anniversary. March 6th.
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