Day Seven

In the morning they took out Esa's neck line, which went straight to his heart so that all of the medicines he was getting would be the most effective. They were worried about it because they don't last for very long and those ones in particular are prone to blood clots. Since he was so swollen, they were especially worried about it. They checked for a blood clot after they took it out and found a small one, but blood could pass by it, so they said it would resolve on it's own. Talk about making me worry. When you hear blood clot, it typically is pretty scary, but they didn't seem to be very concerned. To replace that line they put a picc line in his right arm, which served the same purpose and still went right to his heart.

On the xray that morning they saw fluid in his lungs(another scary thing to hear), but they couldn't tell how much or if it was actually in his lungs or just in the area around the lungs. They did an ultrasound and found that there was fluid in his lungs, but the amount wasn't enough at that point to justify putting tubes back in. They said that because he was so swollen and wasn't getting rid of it as quickly as they wanted the fluid could start pooling in different areas of the body which is what happened with his lung. He was still really swollen and still having tremors, but the swelling was gradually going down.

We were planning on staying at the Ronald McDonald House ($15/night for families 30+ miles away) and had been on their list for 5 days and we were finally first in line. You have to call every morning around 9 to ask if they have a room available in order to get one. We really wanted to stay this night because my mom was flying in and so we could go get her and go back there instead of having to make the drive home at 10 in the evening. Because things had been so crazy that morning we didn't call until a bit later and we lost our place at Ronald McDonald. I was getting pretty worried about all of the gas money/food money we were needing to spend, so I was particularly sad. The social worker had told us in the beginning that there were hotels in the area who gave discounts on their rooms for the families of patients, so I went to go talk to them about what options there were. As soon as she showed me the list I started to cry because they started at around $60, which didn't seem like much of a discount to me. The poor woman wasn't sure what to do with me. She told me about the new Ronald McDonald Family room at the hospital that has sleep rooms(but they were full) and food for the families of the patients. I had also been told to ask about zoo tickets, so I did and she said they were able to give 2 per family. Art was going to come up to visit with the boys, so I thought maybe he could go with them when they came up. I called Art and he told the boys, who were super stoked.

Esa was really fussy all day, crying without making a sound due to the ventilator going to his lungs. He had tons of gas in his belly and the fluid build up was really bothering him. They gave him lots of pain meds and sedatives to try to keep him as comfortable as possible.
Art came up and we went back to the play room for a bit and then went down to eat dinner. We decided that they would go to the zoo after dinner so that they would be fed and so that they would be tuckered out for the ride home. We ate and then looked up directions to the zoo, but found out that they closed at 5. We were all so bummed. The boys were troopers, though. They were happy to go play in the play room again while I pumped and while we figured out what to do. We decided that Art would stay and that I would go get my mom. I was a little worried about going with both of the boys. We had talked about them staying at the hospital while I went to go get her, but it would make the trip longer and it would be hard for the boys to be there that late.

Somehow I was ignorant to the fact that the SLC airport now had two terminals, so when we got there we were waiting for her until someone asked which flight we were waiting for and informed us that we were in the wrong terminal. My mom had sprained her ankle on one leg and had broken her toe on the other. I had the two boys (Jude was in a stroller) and we were parked super far away. Hyrum is the best. We found her, got a wheelchair and Hyrum pushed Jude while I pushed my mom. We drove Home, I cleaned up a bit, pumped, and talked to Art. He said that the swelling had already gone down, so we were both pretty relieved. We were also relieved and grateful to have my mom there. It was pretty stressful to find someone new for the boys to be with every day and the boys needed some stability and a sense of normalcy.  I didn't ask for a sleep room because we weren't sure where we were going to be staying, so I felt so terrible that Art didn't get one. He slept beside Esa on a fold out couch of sorts, which he said wasn't so bad.