This has been the official worst day ever at hospital, barring those terrifying days post-op that were so uncertain. Before you read on, please send us a prayer and energy for a few moments. Bean has been in a very tough place the last few hours, but I hope with positivity flowing to him from all across the globe, by morning we’ll wake up to find today just a bad dream.
The day started normally, Gavin in good spirits and playful, although his nausea was on the rise and he clearly isn’t well. Craig and I had to go to a meeting with a genetic counsellor, (that’s a story for another day.) so we left Gav with his darling Bubby for an hour or so. When we returned we learned that he had been sick and then curled up on her lap and fell asleep.
He slept for an hour and woke up just before transplant. We went through the same routine as before, he got an anti-bacterial bath and was then carried into the clean room to begin transplant. He received, like both other times, the pre-meds that are given to prevent an allergic reaction. He was in an okay mood and wanted to play quiet things like puzzles and stickers for awhile. An hour or so after transplant was over, our nurse and I conferred about the fact that his oxygen sat. Levels were a bit low. Not low enough for real concern, and he showed no signs of labored breathing. We decided to put oxygen prongs on him anyway and he soon was back up to normal levels.
Then everything went a bit insane. One of our nurses took his blood pressure and found it high. We kept taking it every few minutes and it consistently stayed high, far too high. Long-lasting high blood pressure could cause another hemorrhage. His heart rate then went up too, working hard in the 160s while, he was lying down. The nurses and doctors explained that it was caused by one of two things: too much fluid on board or an allergic reaction to the preservative his stem cells were in.
He was given his pre-meds again and we saw no change. We then tried to give him an oral dose of a blood pressure medication, but the taste made him gag and he
threw up. Listening to his lungs, they seemed clear, but a chest x-Ray was ordered
anyway. The tech arrived with the machine quickly, but it was a stressful experience with three nurses, a doctor and two respiratory therapists lurking outside. The scan showed some fluid in the lungs and an enlarged heart.
The next step was to bring his blood pressure down. A doctor from CCU came to confer and decided it wasn’t necessary to transfer him to the ICU, thank God. They will continue to follow him through the night though. The respiratory therapists checked him out and said he could do okay without oxygen, but left the mask set up just in case. He was given another medication for high blood pressure which lowered it a little bit fairly quickly.
By this point, our staff doctor had been alerted and came in from home. Dr. Tal Finkelstein is a remarkable woman and has a great deal of empathy for her patients. She greeted me with a warm hug when she saw my tear-stained face and calmly took control of the situation.
Cardio arrived to assess what was happening with his heart, and the two fellows hooked him up for an ECG to get a better idea of what his heart-rate looked like. Gavin was not happy to be woken by getting attached to a load of wires, particularly when the fellow pinched him with one of the clips. We got it done and they deemed it pretty normal.
Immediately after this, the cardio fellow told me she had to do an ECHO to be sure there wasn’t a lot of fluid around his heart. She informed me that if she found a little bit, we could administer a diuretic and the situation would resolve itself. If she found a lot, they would have to perform surgery to drain it. I felt faint, I could not begin to contemplate how Gav would get through open-heart surgery right now.
While she went to get the machine, I stood over sleeping Gavin and called upon the universe to fill him with healing light. I swept my hands over his body and imaged the fluid draining away from him and leaving his body. I prayed to our guardian angels and saints to help us, to hear us in this desperate moment. Craig came back to the room and the fear vibrating between us was palpable. We held hands and poured forth love for our little man.
The tech came to do the ECHO and luckily Gavin awoke and submitted to it without complaint. I watched the images and listened to the fellow make cheerful comments. I thought She’s being falsely cheery because there’s something wrong. But it turned out that she’s just that way. There is a little bit of fluid there but he is now getting Lasix to flush the fluid out. He doesn’t need surgery. Relief. Joy.
Once this was established the team seemed a lot calmer. Now we monitor his fluid ins
and outs, and his blood pressure. It will still be a long night, but the hope is that the situation will resolve within 24 hours. His heart-rate and blood pressure remain high, but are slowly coming down and sat. levels are okay. Our staff went home, which is a vote of confidence.
He will need another ECHO tomorrow to confirm no more fluid, but is sleeping well so I hope after a bit of rest will be feeling okay. Oh, I forgot to mention he also had a blood transfusion and platelets today! Our nurse is keeping a close eye on him tonight.
I have not felt so hopeless in a long time as I felt today. I was unable to eat and shed many, many tears. We are so near the end of the road, we just have to find the strength to take these last steps.