Chemo, septic shock, dialysis…

It was Sunday February 25. Liam was doing great and was even able to come off the oxygen, which was a very big step and required in order to go ahead with the nexts steps. He’s been on oxygen for the past 4 weeks. In order to receive the Car-T Cells, he needed chemotherapy to free space for the cells. Their goal was to give three days of chemo, Sunday, Monday and Tuesday.

So he received his first round of chemo Sunday evening. He was doing great the whole day. Our new nurse Emily was great, even Liam was drawn to her right away. We got Liam out of bed for the first time in a while.

At night he spiked a fever and got warmer every hour. They gave him Tylenol to lower the fever, but that didn’t really help. During the day he was really thirsty, but because they were afraid, that the water he was drinking could end up in his lungs, he was only allowed to have sponges with water.

In the evening he got the next round of chemo, this time two different ones. He was doing ok, until his saturation quickly droped and so did his blood pressure. From  115/60 (68) to 80/40 (50) which was really low for Liam. They were going to watch it over night. They didn’t really know where it was coming from. In the next few hours his blood pressure was stabilizing, but it took him some time, it was a stressful night. We only slept for about two hours and Liam also didn’t really get the chance to relax.

So Liam was also really puffy again and his blood vessels were leaking really bad. Good that he had his drains in place, they gave him transfusion after tranfusion and it basically drained right away. He was due for his last round of chemo, part of the chemo was lots of fluids running before and after, but with Liam’s condition and with his white blood cells being zero, they decided to cancel the chemo. That was a big relief. We took him out of bed again, so he could relax in Mom’s lap.

In the evening we had the same night shift nurse as the days before, Mitchell. Liam kept him on his toes, but he was doing a great job. So the night was even more stressful and eventful than the the night before. His blood pressure got low again and they started to get worried as it wouldn’t go up, even when they gave him fluid boluses. They tried it with epinephrine and norepinephrine drips, but it wouldn’t help. So they had to try with steroids, which meant that he couldn’t get the cells for a week, but at that time they just wanted to stabilize him. After some time, the blood pressure slowly went up. In the meantime they put in a arterial line to measure his blood pressure constantly.

In the mornig Liam was feeling really unconfortable and was in a lot of pain. They gave him strong pain medication which helped. They were still very worried, as he didn’t pee and his labs didn’t look to good. He was also breathing really fast and was put back on the HighFlow. As Liam was in a really bad place at that time, they already thought of intubating him again, our new Nurse Sol urged them to wait and give him time to calm down, as she thought he was just really unconfortable and in a lot of stress. After several nights of no sleep, he was finally able to rest and his breathing got a lot better, as Sol predictet. She gave us a lot of comfort and with her being there, we even felt ok to take a nap, as we were also exhausted.

We met some new doctors from nephrology, the kidney doctors. Liam’s kidneys seemed to not work properly or not at all, which can become dangerous pretty fast if the potassium level is climbing up. The hope was, that his kidneys are only “angry” and not permanently damaged. They decided to put him on the dialysis machine CRRT.

With the day continuing they were able to go down on the blood pressure medication which was a great sign. When they had to change his dressing, David from Music Therapy came by to play and distract Liam. David and Eveyln did and are still doing an awesome job coordinating with the nurses. Liam is just appreciating the music so much.

On the same day, Liam also got a new visitor from Switzerland, his godmother arrived. Unfortunately he didn’t realize as he was sleeping all day.

As Liam still didn’t pee till the evening they decided to go ahead with the dialysis. His platelets were low once again, they first had to give him another transfusion. The procedure was scheduled for 5pm, but ended up being at 6.30pm. They had to intubate him for the procedure, which of course worried us after the events of the 18th. They did a great job and everything went well. Another anxious moment was, when they put him on the CRRT dialysis machine. You can react to the plastic of the tubes and your blood pressure can drop. He was off the blood pressure medication and his blood pressure was stable, but still at the low end. They said they hardly every had a smoother process of going on the CRRT. That was a big relief and we were all able to get a good night sleep.

The night went well, but Liam was still in pain the next day, we suspected it to be caused by mucositis. A quick look into his mouth confirmed that. Our new Nurse was Kennon, she played some Ukulele for Liam several times before, we basicaly got two in one, a great caring experienced nurse and a musician. 🙂

Liam was pretty relaxed he was laying beneath a warming blanket, he looked very comfortable. At that time Liam had a lot of lines and tubes in place, 7 to be exact, including his G-Tube.

We were all watching over him.

As Liam was a bit tense when physio therapy came, Kennon tried to relax him with some music.

The team was doing everything in their power to make Liam and us feel comfortable.

We had Ali as the night shift nurse, she was just recently in Switzerland and loved it, especially the chocolate. She did a great job and made us feel very comfortable. Liam even peed in the evening, which was great, it meant his kidneys were still working, a step in the right direction.

At night Liam was still in a lot of pain, we mentioned that in rounds and they ordered a pain medicine drip, that always helped in Switzerland.

Music therapy came by again, Evelyn was really excited when she found out, that I started playing the Ukulele, later she stopped by again and brought me some songs and gave me some pointers.

People were constantly popping in just to say hi and ask us how we were doing, we really appreciated it and it was a great distraction. Dr. Tom also came by frequently and checked on Liam. Great thing about him was, that he wasn’t only great on the medical side, but also on the social. 🙂 We just enjoyed talking to him. Overall we had a great team of  doctors around us, very caring.

Liam had another drop in saturation and blood pressure, but recovered quickly, they didn’t really know what caused it. After dressing change he was really awake for the first time in a while, very alert too. He even wanted to look at some books, after that he was also in for a movie, that really cheered us up. Liam was still very puffy.

What also really lifted our spirits were pictures from Switzerland, the local football club (and with football i mean the reall football :)) created a heart in the snow for Liam at practice and before their game they thought of something else. We really appreciated it!

The next day we had Sol as our Nurse again, she’s great, because she really brings her own ideas to the table on rounds and isn’t afraid of disagreeing with the doctors. His pericardial and belly drain were slowly putting out less every day.

I used my newly aquired skills to entertain Liam and he seemed to like it. Stephanie was reading books to him one after another.

It was also time for another Echo, just to follow up and see if the drain was still in place.

He still needed a lot transfusions, platelets, red blood, plasma you name it. Because Liam was doing so well breathing-wise, they wanted to try turning down the HighFlow from 14 to 10 Liters, quite the jump, but they wanted to push him a little bit, he did great on 10 Liters.

Tiffany was out getting her hair done, when she came back, Grandma, Stephanie and I met Matt and Katie in downtown Seattle, we wanted to see the Amazon Go store, we saw it, but it’s closed on weekends. While we were downtown, we thought we can at least go to the Space Needle. The weather was perfect and it was great to get out of the hospital for once.

In the meantime Matt and Katie visited Liam at the hospital. Liam had a better day and wasn’t just sleeping the whole day anymore.

During the night, they were able to go down further with the HighFlow to 8 Liters. After rounds they put him down to 6 Liters and he was fine. He was improving one day at time.

Stephanie was also stopping by one last time before she was leaving for the airport. Liam enjoyed her reading a book to him. We really enjoyed Stephanie’s company and truly appreciated her coming all the way to Seattle.

Matt was providing breakfast from the French bakery around the corner of their house, amazing stuff.

Liam was more relaxed and looked less puffy and also did great on the 6 Liters of HighFlow.

Today was opening day for the Seattle Sounders and Matt treated Grandpa and me with some amazing seats at the stadium. The weather was pretty crazy, we had sunshine, rain, hail all in the course of 90 minutes. We really enjoyed the game, there was even free food! 🙂

Tiffany and Grandma were looking after Liam, for some reason Dr. Tom was stopping by more frequently than usual, I wonder if it was, because of the basketball game that was on.

In the evening the decided to switch out his bed, he was still on a floor bed and not on an ICU one and they weren’t able to weigh him on the floor bed. Switching beds out is pretty complicated with all the lines.

After switching beds, they went down on the HighFlow to 4 Liter, which is almost nothing. Liam spread some good vibes when he peed again. 🙂

During the night we got a visitor while we were sleeping, she left a note on the board, it was Anna from upstairs, she visits us frequently, she’s such a kind-hearted soul. During the week we got visited from so many former nurses, it’s just amazing how they are supporting us.

Another week gone by. It’s hard to keep up with the English blog as there’s so much going on every day, but I’ll catch up.