Oof. It's been a wild 18 hours.

After my post yesterday, Mason never really woke up for the rest of the day.

At about 9:45 last night, his blood pressure dropped significantly. His nurses were on it immediately to push fluids and try to boost it. I was told that they were also going to give him two units of blood to help stabilize the blood pressure, as his counts were very low. The first push of fluids seemed to help, until he decided to sit up in his chair for his nightly meal of ravioli. As soon as he sat up, the pressure tanked again.

The nurses again pushed fluids, but his fever also spiked to nearly 105. His body broke out in a bright red rash. Because of the high fever, Mason was shaking uncontrollably, and his heart rate was living at 180 for way too long.

Due to the combination of factors, they called the rapid response team to the room to just take a look at Mason and to be watchful during the night. As I laid down to try and get a few minutes of sleep at 3:30 a.m., he was getting one unit of blood and things seemed to be settled.

The nurse woke me up 30 minutes later to let me know that we were being sent back to the pediatric intensive care unit, as Mason's blood pressure continued to jump around. He was struggling with severe nausea, chills and the fever would not break.

Now- if you have never been in an in-patient center where you know you plan to be long-term, it might not seem like a big deal to move to the ICU. But we really were trying to make his room seem like home and be settled in for a full 60-day stay. I was staring at a room filled with our clothes, slippers, games, coloring books, word puzzle books, regular books, all the snacks and ravioli in the world, blankets and pillows- and needed to have it packed to move out immediately (with only 30 minutes of sleep- this felt VERY overwhelming!). The wonderful nurses were incredibly helpful in getting every single item of ours packed up and moved on down to the ICU room.

We were settled into the ICU by 6 a.m. The doctors assured me that if something drastic happened with his blood pressure again, this particular unit is the only place where they are allowed to administer the necessary medication for the issue, which is why we were sent here. Once again, I know that we are in the right place and getting the best care- but it can just be really hard to watch. We have been told that as soon as this blood pressure is stable, we will move back up to the Aflac unit floor, but they want to keep him here in the ICU to watch it at least overnight tonight.

We spent the morning continuing to fight the fever and the overwhelming nausea. When we met with the doctors this morning, we all agreed that we are at the point where we need to put in a feeding tube to make sure that Mason gets the nutrition he needs so he has the energy his body needs to fight both the leukemia that is still present as well as whatever other infections may be causing this latest spike in symptoms.

Mason was an absolute champion about taking one of his medicines in pill form this morning, before we decided on the feeding tube. We are pulling out all the stops- using essential oils to calm him, counting his breathing and then just doing the hard thing and swallowing the pill. He was also a complete champ when having the feeding tube placed (or so I was told- I left him in the room with John so I could just spend a few minutes outside in the sunshine). After we added the feeding tube, they were able to give him the other oral medicines he needs through that tube for now, as we continue to work to get the nausea under control. He will still be able to eat and drink whatever he feels like he can handle, but this avenue allows us to make sure he is fully taken care of.

At last check, the high fever has broken and he is no longer hot to the touch. The fever remains low grade, but he is no longer shivering and has been able to rest well.

The plan continues to be that on Wednesday, 6/26, we will meet with the transplant team, Mason will get a bone marrow aspiration done, and we will proceed with the next round of chemo as soon as his body is ready for it.

Because we were unable to get more than a few minutes of sleep at a time, Mason has been sleeping most of the day. He just let me know that we might be up all night watching movies. After what his little (I say that sarcastically since he is 6 feet tall- but he is still only 13) body went through in the last 12 hours, I'm ready to let him sleep as much as he needs. I did tell him that there are WAY less dramatic ways to let me know how much he hated that I made him take a bath yesterday.

For the time being- Smilegrams can be sent to Mason in room PICU 30. (For those that sent them yesterday, they did find their way to us today- thank you!).

Please keep the prayers coming- for stabilized blood pressure, a move out of the ICU and back to the normal floor, restful sleep for Mason (and me!), continued control over the fever and nausea, and for this child to just get a full day where he feels a little closer to normal. Thank you for all your support!