Another Tough Day

The Wi-Fi connection here at the hospital was again down last night until early this morning.

(Friday, Sept. 27th, 6:30 p.m.) It’s been another tough day.  My brother, Jerry, watched Jayson from about 10 p.m. to 4 a.m. Friday morning while I slept in the next room. Henry accompanied his mom and Keilani at the Fisher House. Jerry told me that during the night, Jayson seemed to have harder time breathing.  He also told me that Jayson said that he was tired. The respiratory therapist replaced the vapotherm with the Bipap mask.  Jerry encouraged him to go to sleep and rest.  My sister, Jannette, arrived soon after Jerry left and watched Jayson for an hour or so along with Henry. 

At about 5:30 in the morning, Jayson was a given a chest x-ray.  At 9:00 a.m., Jayson was taken to get a PET scan as recommended by his infectious disease doctor. His ID doctor was trying to determine the cause of Jayson’s fever which has been going on for about 5 days. The new antibiotics that he was given earlier in the week don’t seem to be helping.  Jayson was transported to PET scan with his entourage of doctors, nurses, respiratory therapist and me.  The actual procedure was only about 20 minutes, but setting Jayson up on the machine and getting him stabile took some time with all the IV meds/fluids he was receiving along with the BiPap machine.  I stayed in the waiting room and one of the nurses kept me updated on what was being done.

After Jayson was done with PET scan, I left for a few hours to run some errands.  I told Jayson I was leaving and would be back a few hours later. This was the first time I have left the hospital premises since Jayson was admitted on Sept. 8^th. It was good to get out of the hospital for a few hours.

When I returned, my husband told me that Jayson was looking for me.  Jayson was sleeping and I noticed that he was breathing differently from the previous days.  I was told that the x-ray from that morning showed Jayson had more fluids in his lungs once again.  This explained why he was having tougher time breathing.  

Jayson’s ICU doctor came in the room to share the initial findings from the PET scan.  He said that there were no obvious significant differences when they compared this PET scan with the one that was done on Sept. 9^th.  There was no obvious solid infection that can be seen on the scan.  The radiologist was in the process of looking at each of the more detailed slides and comparing it to the previous ones. We still haven’t received his final report.

After the ICU doctor left the room, his respiratory therapist and nurse said that while they were cleaning his mouth and struggling to breathe normally, he told them he was “tired” and it was “too much”.  According to them he had said these twice.  They weren’t exactly sure what he was referring to.  My mother-in-law was with Jayson most the time while I was gone.  She mentioned her own conversation with him and the similar words she heard. Of course, this made me very emotional.  I don’t know if this meant he was done and tired with the entire treatment and wanted to give up or if it was the specific cleaning or treatment he didn’t want to do. It’s difficult to see a family member so sick, tired and in pain, especially as the parent. Henry & I just stayed by Jayson’s bed-side until we had to attend the weekly meeting with Jayson’s medical team.

As in the previous meeting last week, Jayson’s ICU doctor first discussed Jayson’s current condition and the plan for the day and the days to follow.  He also showed us a picture of Jayson’s latest x-ray.  There was a large area that normally would show up on the x-ray as black, but was now hazy white. This indicated the presence of fluids. The goal was to remove the excess fluids once again using the same medication as before when we did the “Pee! Jayson! Pee!” campaign.

Jayson’s ICU doctor could not determine if this would work once again.  But he said it’s a tough balancing act.  When his blood counts are low, he needs to get blood products, which increase his fluid intake.  This can cause him to retain more fluids, as in this case. This is counteracted by giving Jayson medication to help him pee, but if he pees too much, this can affect his blood pressure and he would need to be given more fluid.  It’s just a cycle that will continue until his bone marrow begins producing its own blood.  That’s estimated to be about another 2-3 weeks. The plan is to try to stay ahead and the hope that Jayson’s body will continue to respond positively.

During this meeting, we had to once again decide on what our goals were for Jayson.  Last week, our goal was to be able to get the breathing tube removed and be able to interact with Jayson.  We were able to achieve these goals.  This week, the goals are to get rid of the fever he’s had, find the cause of the fever, if possible, and improve Jayson’s respiratory system. 

After talking about Jayson’s current condition, his ICU doctor once again had to give us possible worst case scenarios.  This part is always hard to deal with and this is when we tend to get very emotional.  His doctor asked that if Jayson continues to have a hard time breathing on his own, would we want to re-intubate him again? Both Henry & I agreed that we wouldn’t want to put Jayson through that again.  One of his nurses added that Jayson did let her know that he didn’t want the breathing tube again. We find comfort in knowing that we all agreed to this.  We told his medical team, that if it was Jayson’s time to go and he no longer had the energy or will to fight, we would respect his decision.  Our wish is that if he goes, he goes peacefully, without pain and suffering.  We also told them that we knew the odds are against Jayson given all that he has going on, but we were not giving up.  We will continue to rely and trust in God and hope for His miracle.