4 months ago…..

4 months.

I’ll just let that sink in.

4 months ago today, Capt Snuggles had his liver transplant. I thought it would be the end of the fear.  The end of the constant worry over brain damage and the downward spiral an episode of high ammonia can cause.

Instead it was just the beginning of new worries and even greater fears.

*sigh*

Everyday seems to bring new problems, new mysteries to solve.

Yes, I said mysteries. We already knew Capt Snuggles was an enigma. But he proved it double-fold on Friday. After a random quiet day on Thursday, Friday dawned with increased lymphocytes and additional redness to his skin.

After his dressing change, the BMT doctors ordered another round of campath. It’s only been 2 days since his last dose, so this is serious. His lymphocytes showed re-emerging T-cells.  T-cells are not our friends.

During his infusion of campath, a very disturbing thing happened.

He turned purple.

His hands, his feet, and most of the areas where the renewed redness had been, turned a dark, almost black shade of purple.

You can imagine how quickly ALL the doctors came running. After double checking the ventilator, drawing blood for numerous labs, checking and double-checking his heart and lungs and examining his skin, the doctors were still perplexed.

He started the new antibiotic 3 days ago. He was receiving the campath infusion when he initially turned purple, so the Chaperones thought maybe there had been a drug interaction or reaction, so they turned the campath off.

Slowly the purple went away. Maybe it was a rare drug reaction. The pharmacist was called. While they waited for some answers, he turned purple again. Not quite as dark as before, but definitely purple.

Most of the blood-work came back stable. He was slightly acidotic, so they gave a dose of sodium bicarb, but really, other than that, nothing jumped out as the culprit.

Clinically, he was stable, though they decided not to continue with the campath, just in case. Of course, this all had to happen as I was leaving.

Yes, you heard right.

For the first time in almost a month, the Hub was bringing the boys down to spend the weekend. I wanted to send them home. I wanted to pull my chair up and sit alongside Capt Snuggles’ bed all night long.

But I didn’t.

Hub picked me up from in front of the hospital and we went to spend the night at the RMH with the boys.

It was lovely to spend the evening with the boys, but it was mind-numbing to think of David and all the things that could possibly go wrong overnight.

It’s a tough balance.

Made all the tougher when the phone rings at 6am and it’s the Fellow on the other end. Fortunately it wasn’t catastrophic, he’d had a particularly large poop and they needed to change his dressing. They needed to use the propofol to sedate him and had to have consent.

But that call at 6am had my heart-pounding and my mind racing.

I went ahead and got ready to go over to the hospital to attend morning rounds. Before I walked over, I checked his 4am labs.

His hemoglobin was low, his platelets were low, his potassium was low, his IVIG level was low, but his lymphocytes were high. They were at 3% Friday, when they decided he needed the campath. Now they were at 14%. And to make matters worse, when I arrived at 7:30am – he was still purple.

Maybe we should just agree it’s the Worst. Month. EVER.

They agreed at rounds that he needed blood, platelets, IVIG, a potassium bolus & he needed to make-up the campath they stopped yesterday. They agreed they would watch him very carefully before and after each infusion he was going to get. (All this was in addition to the 4 antibiotics, anti-fungal, IV nutrition, sedation, pain meds, & steroids he gets daily.)

And I was going to Chuck E. Cheese’s with the boys for Jonathan’s birthday.

I know he’s in good hands, I do. But it doesn’t erase the guilt I feel when I have to leave him. Just as I know the boys are taken care of when I’m not there,  it doesn’t erase the guilt I feel for not being there when they need me.

Of course, I went to Chuck E. Cheese with the boys. But I thought of Capt Snuggles as we ate pizza and played games & Jonathan opened his present’s. Just as I think of the boys, as I spend endless days and nights sitting with Capt Snuggles.

All I can say is…….

Worse. Month. EVER.