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It seems I am not allowed in this situation to say, “he’s getting better”. Of course I am forced to bitterly eat those words just 12 hours later. Today we started off strong with Gavin breathing on his own and doing fairly well. But a few things plagued him throughout the day. We learned early […]

The Oxygen Ladder

Over the last week, we have slowly climbed the oxygen ladder, using ever greater amounts and ever more complex machines. It is with caution and relief that I can say we are beginning the descent, rung by rung. We started at blow-by, and proceeded to prongs, mask, skipped C-PAP, went to ventilation, and then the […]

Good News, Bad News

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 […]


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 […]

In 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 […]

The Fighter

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 […]

In the ICU

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 […]

Intensive care

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 […]

Many Maybes

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 […]


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, […]