Inpatient, ICU…

Monday – Sunday

On Monday he looked much better and wasn’t as puffy anymore. He got a teddy bear from our friends in Switzerland, which was exciting for him. As it was registered mail and we weren’t at home, Matt got it for us at the post office.

Liam was due for another echo and ultrasound. So after a new doctor showed up, de cardiologist. He wanted to have a look at Liam and see him first hand. They way Liam was breathing was concerning him, the fluids around his heart and lungs didn’t help. One idea was draining the fluids with a small catheter. So he was going to talk to the team.

As they were talking about transferin Liam to the ICU before, it was pretty clear to us, what’s going to happen.

In the afternoon they called in a rapid response team, which basically just calls in all the doctors for a pow wow. They decided to move Liam to the ICU on the 6th floor. He would be better monitored and they could support him breath better with a mask.

So it was time to move.

It was already 6pm when we finally got to our new room in the ICU. They put a scuba like mask on his face to help him breath. The pressure of the mask helped filling his lungs. Because of his big belly he wasn’t able to do this on his own.

We didn’t get much sleep that night and the doctor making their rounds at 8am, so we must have looked like zombies. The doctors said, that the goal is to support Liam with his breathing and get the surplus fluids out of his body. He was tolerating the mask pretty well and the pressure helped him a lot and he was able to get some much needed rest. My parents got back to Seattle on Tuesday, which helps a lot.

He would have gotten the T-Cells by now, but of course it was put on hold.

Tuesday night he was waking up frequently and would freak out a little bit, because of his mask, I would probably too if my face was covered with that thing.

We had one of the nicest nurses on Wednesday, she would go above and beyond for Liam. Because Liam still got his nose tube, he wasn’t able to wear the mask which would only cover his nose. Or so we all thought, but Haayoung, our nurse, tried everything to get Liam off the scuba mask and she came up with a plan. She talked to the respiratory nurse and they were able to seal the nose mask properly. So Liam was able to lose the scuba mask, which made him really happy. It was a lot less invasive and still helped him breathe the way it was supposed to.

The night was a bit tiring again for Tiffany and me, but only because we had to change his diaper a lot which was great, because that meant his bowel was working.

The doctors were happy with his progress and the nose mask was working great for him. Because of that, they reduced the pressure helping Liam breathe and he was doing great with the new setting. Again we had a great nurse in Cara on Thurday. She also was supporting Liam in every way she could.

As it was the first day in February we had to move to another apartment, Katie and my parents helped move all our stuff, which was quite a lot. The new place is great, we just can’t really enjoy it right now, as we are at the hospital day and night.

Cara was able to get music therapy to come and play some music for Liam, which he really enjoyed a lot.

Liam even had the desire to watch some cartoons, which is always a good sign.

The night was going pretty well and Liam was doing better. So the doctors decided to put him on the High Flow machine, which is a nose cannula which also pushes air down his nose. They were going to put him on it for two hours and see how he handles it. Meanwhile Cara talked to Children Life Care to get some toys for Liam. They brought a whole box of toys.

Liam was doing really good on the High Flow machine so they let him on it. He was in a playful mood and was also allow to have some sips of water.

The night was again pretty quiet and he was in a great mood in the mornig.

They were happy with his condition and recuded the pressure on the High Flow machine from 10 to 8 liters. He was handling it really well. His belly was soft, but still a little big and his weight is also still a bit higher than usual.

Matt was visiting us again at the hospital which is always nice. 🙂 Because Liam was doing so good, we decided that one of us should get out of the hospital. As I was going to watch the Super Bowl at Matt and Katie’s house on Sunday, it was Tiffany’s turn on Saturday. My mom and her went to the Northgate Shopping Mall. My dad was staying with Liam and me in the mean time. He slept a lot through the day. When he woke up he was pretty active and joyful.

The oncology doctors came by and informed us about the further steps. It is planed that Liam will get another dose of chemo and depending on his condition will get the Car-T cells after. Hopefully in this coming week.

We had another good night and Liam was able to stay on the 8 liters of pressure over night. His belly is still big and makes him work a little hard to fill his lungs on his own, so he still needed to be on the High Flow, it just takes time. Because his cells are low, he needs blood from time to time, so they gave him some today.

Today he was in the mood to watch his favourite cartoon again, Zootopia. He watches it at least once a day. 🙂 Overall he’s doing pretty good, but as long as he has to be on the High Flow he needs to stay in the ICU.

My parents stayed with Tiffany and Liam, as I was picked up by Matt to go to their house to watch the Super Bowl. It was a great expirience to attend an authentic Super Bowl party. 🙂

When I came back, Liam had some stomach pain due to air in his belly, but the nurse helped him by venting his belly through his g-tube.

Now it’s time to go to sleep and we’ll see what tomorrow brings.