I don’t know how to explain today. Many ups and downs as usual but overall we are all happy that Bean’s oxygen requirements overnight came down to 45%. Clearly, he enjoyed sleeping on his tummy and it helped him tremendously.

We spent most of the day watching Bean being gently vibrated by the oscillator. There is nothing really to do in the ICU because there is no child-care to be done. Occasionally we wipe his mouth or moisturize his legs but that’s about it. Lots of time to chat with the nurse and ask questions, which is helpful.

There are no words to describe how agonizing today has been. I felt more raw fear today than I have for many months. I want everyone to be reassured that Gavin is stable, and we hope showing some small improvement from earlier today.

As I mentioned in a previous post, he was very stable this morning and showing good vitals. He was on 65% oxygen. We spent some quiet time talking to him, he was still sedated but I’m sure can still hear us. I told him that he will be fine and is getting better every day. I said the most powerful prayers I could and begged for his protection. Shortly the anesthesia team came and we discussed everything before they took Gavin to the OR.

Gavin is in the OR having his biopsy done. We hope and pray that he has the strength to get through this. Trying to focus my energy towards him and also hoping the anesthesia team and surgeons feel this energy too.

The surgery should be over within a couple of hours, and Gavin will be returned to the ICU.

This morning he looked peaceful and calm, our guardian angel Ann made sure that he had a good night. Our eternal gratitude to you Ann and all the other nurses who have made a difference for Gavin.

Today has been rocky. Many procedures and scans, and Gav spent the day mostly sedated and only opened his eyes a smidge a couple of times. This afternoon there were some terrible, terrible moments, but he is now very stable and showing very good vitals. Unfortunately, his oxygen needs have increased yet again.

The biopsy has been put off until tomorrow. We are frightened, but believing whole-heartedly that Gavin has the will and strength to get through the surgery tomorrow.

Gavin is sleeping peacefully under sedation for the first time in many days. No oxygen mask slipping off and plunging him into desat. As Craig said in the previous post, things seemed to go downhill very rapidly this afternoon. His nausea was worsening and he vomited continuously for the whole day, but was asleep for the most part as we had him on Ativan.

We were forced to increase his oxygen needs earlier in the day after a terrible night of vomiting, and then found this evening that even with the oxygen quite high he was no longer maintaining decent sats. CCRT came to examine him again and finally agreed it was time to go. The doctor told me quite calmly that Gavin was nowhere near a true emergent situation but it was time to take action before we reached the critical point.

Gavin has been admitted to the intensive care unit.

His oxygen levels fell dramatically around 5.30pm and he had to be sedated and intubated. He’s off for a CT scan tonight to check his shunt, and they’re still planning to do the biopsy tomorrow.

It’s been a very stressful few days, but we have to believe in the amazing feats of strength and endurance that the Gavinator is capable of.

Ugh. I don’t really have anything else to say. Once I had (sort of) resigned myself to the idea of doing a lung biopsy, the team came back saying that the plan might be shelved for a bit.

I don’t want to get into all the medical details right now, but Gavin may have something more fundamentally wrong with his lungs, a terrible side-effect of the chemo. The situation is not good, but we hope that with all the teams on board we can get to the root of the problem. There are many maybes and what ifs being thrown around right now, so I’ll keep you all posted on what happens tomorrow.

A couple of posts back, Craig detailed the number of procedures that our Bean has had. Well, we are soon to add one more to the list. The team has decided today that we must do a lung biopsy to determine what is wrong with Gavin’s lungs. There are two things that they may find, but I don’t want to face the details of those just yet by writing them down.

In December of 2007, mere weeks before Bean’s conception, Craig and I spent several days bouncing around in a Land Rover in the Salar de Uyuni , Bolivia. The world’s largest salt flat is an area of such raw, other-wordly beauty. For both of us it has remained one of the most special places we’ve had the privilege to visit. And yet, the town of Uyuni, the launchpad for this area, is literally a dump. As you approach the town along a windswept plain dotted with only low-lying scrub, every small bush, every stick and every rock has a small piece of garbage attached to it. The wind has blown the refuse of the town out into a wide rubbish halo on all sides. The sight of all those shredded plastic bags was deeply depressing. I decided then that I would try my best to avoid plastic bags altogether from then on.

By my reckoning Gavin has had 9 separate operations and procedures in less than 6 months. There may have been more, I’ll have to check with Erica.

He’s also had 6 rounds of chemotherapy, 3 MRIs, at least 6 CT scans (I lost count), 6 GFR kidney tests, 3 ECGs, 6 echocardiagrams, dozens of X-Rays, and innumerable needles.

He has been nauseated for weeks at a time and as I write this he hasn’t had any food for 10 days - all his nutritional needs have been met through TPN. Oh, and he’s currently on oxygen 24×7.