Back up and down…

Monday after the Super Bowl we were able to go back to the Oncology Floor on the 8th level. He was doing much better and was also in a good mood.

In the coming days he was improving a little bit every day. He was still on the High Flow machine, but was able to come down from 8 Liters pressure to 4 Liters. Liam still had to throw up almost every day, probably due to mucus which was bothering him, every time he threw up, he felt much better after. He was better all-around. He kind of fell in love a little bit with his new nurse Anna, who was doing a great job and also took time to play with Liam to break the ice. 🙂

They also started his feeds through his G-Tube again and were constantly increasing it, until he was on a good level.

We have already been here more than 50 days here and mostly in the hospital, we are very thankful to my employer Swiss Life. They make it possible, that I can fully focus on Liam’s therapy and be there for him and Tiffany. They are constantly supporting us.

As he had still problems breathing, they wanted to do an Echo again, to check the fluid around his heart. It showed that is has accumulated quite a big amount, so they decided to drain it. They finally did that on Tuesday, first they wanted to leave the drain in, but as there was no room in the ICU they had to pull it. The procedure was going really well and the drained 250ml of fluid from around his heart, he was really releived after and like a completely different child, even the nurse said so. But as the day went by he seemed to get more bottered again. So we had a feeling the fluid was coming back, one of the disadvantages of pulling the tube after the drain.

The next day Liam was pretty tired and didn’t feel like moving much, this was until we decided to play some baseball in his room. He got really excited and was suddenly in a great mood. We tried to use that and asked him, if he wanted to ride a bike outside the room. Remember he was still on oxygen and on the monitor. But nonetheless he liked the idea and agreed. He was sceptical at first, but once we were rolling and his doll was hooked up aswell, he liked it. We thought he would get tired after a minute, but he wanted ride like 20 laps, which is about 45 minutes. That really filled us with joy!

he had a bit of a tougher night, his blood pressure was a bit high and his saturation dropped from time to time. During the day physiotherapy came by, but Liam didn’t really feel like moving much. At least he was able to sit for a while. The are doing a really great job motivating him playfully.

Yui, our nurse, was just wonderful and doing a great job keeping our spirits up.

They did another Echo and felt like it’s time to drain the fluid from around the heart AGAIN, if they just would have let the drain in. So the procedure was schedule for Friday morning. This time they would let the drain in and would solve the bed issue in the ICU, it would later turn out, that the ICU would be the safest place to be for him.

So Friday morning we went down to interventional radiology, the same nurses transported us down to the procedure room, Yui also came along and which was great for Liam and us.

The procedure is pretty straight forward, they stick a little needle in below the breastbone and let the fluid drain. Again it immediately drained 135ml which is a lot in just 3 days. My parents and I gathered our belongings as we had to move down to the ICU. Liam and Tiffany had to wait in the recovery room until the bed was ready. Nothing new to us and we settled pretty fast. Liam was doing ok, the belly was just getting bigger and that really troubled him and especially didn’t help him breath easy. So much for week nine, much more to follow from last week, but in a separate post. I was actually writing most of this post last Saturday, but things just dramatically changed that evening, that’s why it took another week to post it. So stay tuned.