I woke up this morning feeling quite calm with only a small undercurrent of anxiety pulsing beneath the surface. I just felt that as long as I remain calm, Gavin could come through the procedure well with no ill effects.

Happily, he flew through the procedure with no trouble to speak of, and did not need to go to the room being held for him in the ICU. We tried to prepare him a little bit for what would happen. I think he was just happy to leave the room and go for a “ride” through the halls. We went downstairs to an isolation room in PACU and waited to be called to the OR.

Tomorrow Gavin has to be taken to the OR to have a procedure done under sedation. Unfortunately our efforts to get the fluid off of Gavin’s lungs were not successful. He has continued to require larger amounts of oxygen and is exhausted from days of a high heart rate and high respiratory rate.

There is a lot of concern that his condition will continue to deteriorate. He himself is still pretty happy, but is tired and needs to keep his mask on at all times or immediately plunges into desat.

For once, I’m going to make this quick as I’m drained from this last week of stress and need to get some sleep. In a nutshell, things seem to be looking up and getting better.

Today was impossible, Gavin was really struggling this morning with his prongs and we decided that he needed more oxygen than they could deliver, so we put a mask on him instead, which he absolutely hated and had a hard time with at first, but soon got used to. I knew that we were going to go to CT today, but thought it might be in the evening. At one point though, the fellow who was assigned to us today came to talk about sending him to the ICU and went over a couple of things that could be wrong. Seeing my poor babe labour to get his breath is breaking my heart in a way that it hasn’t yet been broken. His respiratory rates were extremely high and his heart-rate was correspondingly high too. There was a lot of concern from everyone on the team and yet again half the hospital showed up to assess him. However, when our staff doctor came around he quickly assured me that he wasn’t totally alarmed (yet) just concerned, and wanted to find out definitively what was going on in his lungs.

It has been another strange day at the HSC. Gavin’s counts hit rock-bottom this morning and won’t come back up for awhile. Despite doing yet another chest x-ray, we are still no closer to understanding why Gav continues to require oxygen and is breathing at a very rapid rate.

He was cheerful enough this morning and we played with toys and did puzzles for a couple of hours. After his chest x-ray, we waited around to see if cardio would come back to do the follow-up ECG. They finally came after I’d stepped out for lunch but according to Bubby it was a relaxed affair.

I’ve started this sentence about five times and deleted it every time because I simply don’t know where to begin. I’m so, so happy to report that Gavin seems to be on the slow road to recovery, with his hypertension resolved, and heart-rate seems to stay moderate or low as long as he’s getting the oxygen he needs. And yet, I feel that by saying anything positive I’m jinxing myself and will find everything crashing down around me tomorrow. I knock on wood and cross my fingers, just as all our doctors do, and very cautiously say, things are getting better.

I think Craig and I have both aged 10 years in the last two days. Last night was one of my worst nights in hospital, almost completely sleepless and full of stress and anxiety. Before I go on though, I want to thank all of you out there who have been praying for us and sending healing thoughts. We could not get through this without such support, many thanks for all the loving and kind words. I want to let everyone know straightaway that Gavin appears to be doing much better, we still don’t know what is at the root of his high blood pressure, but the doctors feel this will abate with time.

Gavin’s condition hasn’t improved and the doctors don’t know what’s wrong.

He has high blood pressure, high heart rate, high respitory rate, and low oxygen saturation. The BP is still their biggest concern and the drugs have been relatively ineffective in treating it.

So, they continue to monitor and test.

His heart test results came back normal thankfully. There was a small amount of fluid around his heart and in his lungs but not enough to warrant surgery.

At around one in the morning last night, Gavin’s blood pressure returned to normal and I thought we might be out of the woods. No such luck.

The rest of the night passes uneventfully except for the fact that he woke up while the nurse was in the room around two and refused to go back to sleep but wanted to watch a DVD. Although I said no, he became far too agitated so I gave in and we watched Curious George until 3:30. I was in a sleep-deprived fog at this point, and the rest of the night passed in a blur. He woke up before 7 full of life and we started playing.

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.

Today at around 4:00 pm Gavin received his very last dose of chemo. I’m going forward on the assumption that this is ever. It is a hard lesson to learn to not ask what if. Doubt is so very difficult to banish. There can be no room for doubt here - we must simply and purely believe that all will be well.

Today was sweet and sour, like most of our days. You learn to spit out the sour bits and only taste the sweet. Gavin and I spent a quiet morning together doing puzzles until Bubby arrived, then we all went out for a little jaunt around the halls. On our travels we bumped into Mary Sunshine, the resident clown, who gave Gav a bubble-catching net to play with. We all went back to the room to do some window drawings. I stopped to get something and came back to find Gavin and Mary sitting on the floor together, drawing outlines of Gavin’s feet on the windows. It’s rare for him to be so friendly and open with a stranger, it made me happy to see him chatting away to her and choosing colours.