All Puffed Up

So here we are, day two in the hospital, after a sleepless night and quite a day that led us here. That Guy was with me, my dad still hadn’t seen me so he came up at some point that morning. The doctors came around doing rounds. When I awoke, my arms and hands were even puffier than before! It seemed like this day brought even more questions than answers, which was very frustrating.

I was still very out of it. Some might say I always am, so just imagine how I was even worse. I was not allowed to eat solid food we found out and was not allowed to eat anything until after my IR check that day. Someone had allowed me to have dinner the night before, whoops! And that kind of sums up how everything went that day.

There was some good news when I went to IR that morning. Someone described the procedure in IR that day as putting a hole down the middle of the clot and tunneling through. It was described as aggressive treatment. I was again able to watch them do this on the screen. Both very cool and terrifying, since there was always the risk that a piece could break off. When I expressed concern and wanted to know the “What if that happens?” answers, no one would really answer me. Luckily, I did not find out. They also thought that given the relatively short amount of time I had been receiving the tPA, it had been working well.

Sometime during the day, my dad facetimed me with That Little Girl. I couldn’t hold the phone, so That Guy was there and held it up. As we answered, it was the first time I had seen myself. Apparently, this was the improved version, but what I saw was terrifying. It looked like I had deep purple bruises all over my face and head. My neck and jawline was all discolored. It was startling and yet somehow it didn’t even come up when That Little Girl saw me. You have to love kids! So you can imagine my excitement when the doctors told us that the discoloration could be permanent! I was still not able to lay flat at this point and one of the nurses had me start propping my arms up so that they were laying straight propped up on two pillows out in front of me.

In the late afternoon, they were finally able to do the ultrasound of my extremities. It also happened to coincide with when a few visitors arrived, so it made for a crazy late afternoon. Additionally, my parents were there, since my inlaws were able to watch our girls for a little bit, plus That Guy. It was a welcome full house! Unfortunately, the ultrasound revealed three clots in my left calf. This was interesting, because my left calf had been more swollen the entire time I was pregnant, and had seemed to go down slightly, but had been (more) swollen and noted as such by myself and the doctors at various appointments. I never experienced any pain or red hotness of the calf so the symptoms were not there.

The interesting thing about having the visitors is that I had been pretty uncomfortable with anyone beyond my parents, our girls, and That Guy seeing me without a wig prior to this. Well, that was out the window. I was so much more comfortable without a wig or cap on given the extreme swelling my entire body was doing, especially my head. I know my mom warned people of my coloring before they came back, but I’m not sure if the bald purple head was totally what they were expecting!

That night a different resident came around from the ICU team. With the clots in my calf, she stated very certainly that they would be installing a mesh filter. With my own experiences, as well as a family member’s, I had remember hearing very certainly that the mesh filters could actually cause clots. This seemed a little bit like a bad idea to me! She wasn’t able to address my questions and basically said, well, that is what the doctors have decided, too bad so sad. Well, I was sad. And so was my mom. The poor nurse who was on duty that night was stuck answering as many questions as possible for us and printed things out for us to read. She was amazing! The resident told us the procedure was scheduled and walked us through quite a bit of information as to what was going to happen before she had left for the night. The resident discussed that the filter can be placed either in the leg or below the heart but given where my clots were they would likely do the leg, but also stated they would go in through the neck (Spoiler, the ICU doctor never intended put in a filter we learned the next morning!?). It was pretty confusing!

Some other crazy things were thrown around on the second day and from my notebook I remember talking about the fact that someone said once you are on blood thinners, you can’t continue on chemotherapy. Fortunately, that only applied to the tPA, but way to scare a girl! So I missed my treatment scheduled for the next day. This was concerning to us, but the doctors did not seem to think that in the scheme of things it would change the outcomes of my treatment. The resident told me to not move my legs and stay as still as possible so that the clots in my calf didn’t travel. My nurse told me the doctor said that while I was bed ridden I could and should move them a bit and could sit with my knees bent and so forth. Well, that was quite the contradiction and terrifying as a patient!

That evening my back also started to really ache. At last, I was able to get a little bit of sleep. It helped knowing my mom was there, and she was keeping an eye on me!

The next morning, I missed That Little Girl’s first day of school. It was heartbreaking and frustrating and at the same time I was not able to focus on that, because I was still in a pretty scary place and worrying about what was coming next. That Guy was able to take her to school and did his best to capture it with pictures. My dad was watching That Baby and would pick her up from school. That Guy made a quick stop at the hospital and caught the team as they made their rounds.

When the ICU team of doctors rounded, we learned that day that the filter would not be placed, unless they found another reason to do so. The resident had kind of jumped the gun on that one and for all the reasons we were concerned, the ICU doctor would not be in favor of doing one either. We were also concerned because my throat and voice were not right. My voice was froggy and kind of airy, just weak. My throat was dry. This was all considered to be part of what was going on with my body and to be expected considering the clot in the SVC. They explained that my neck was so discolored not just from the back up from the blood, but also those veins and vessels or whatever they are had actually had to get bigger to accommodate the back up. The back pain I was experiencing was from the blood clots in my lungs. They weren’t surprised at all to hear that and explained that the lining of my lungs was likely irritated. I asked a lot of questions about how all this would have happened and they said the port likely did not cause the clot and that it would not come out (spoiler again, it did after a few days of debate among the team). The good news is that my lugs sounded good. The oncologist that rounds came to see me for the first time, as did the Physician’s Assistant from their office. I don’t remember having any visitors that day, except that the kind doctor from the ER who had rubbed my arm and really been comforting came up to check on me. He said that the doctors and nurses who had helped me were all worried about me and he wanted to come up and see how I was and let me know that they were thinking of me. Apparently, most of them had been my age with young kids and just felt for our situation. That was so touching!

After only broth the second night, this third day they had only allowed me a single cup of ice chips. I had been scheduled to go to IR late that morning, but had been pushed back repeatedly. By 8 pm, I was getting a bit grumpy about it. I wanted to see what was going on! I finally was able to get down. Literally, just as they were starting, I learned that depending what they saw, the line delivering the tPA may be coming out. That was pretty nerve wracking. I wanted every drop I could get and I had been told previously it was a three day limit, not a two day limit and while it was the third day, it was only in for forty-eight hours. Well, they saw that it was really opening up, so they gave me one more day!

By the end of the third day, we pressed the team to find out what the plan was for the coming days and found out the first step was to get off the tPA and then remain on the heparin drip before transitioning to lovenox injections. When That Guy came to spend the night, he brought fruit friends had sent! Perfect timing as I was finally allowed to eat something that day! Since I was still puffed up, That Guy and my mom fed me fruit and hospital pizza.