back in the ICU

The last two days have not been good.

On Monday, our nurse Tara noted an increase in Ford's work of breathing from morning to night - meaning his resp rate had gone up, his head was bobbing and he was indrawing a lot. By yesterday morning when conditions hadn't improved, it was a topic of great debate at rounds.

There are four things they look for when they see this kind of behavior. I can't remember two of the four as they, at present, don't apply. The two we are dealing with is heart (mal)function and infection.

So Tuesday morning there was a line up of doctors and technicians out our door - he had an xray, an echo and blood work. The last is always traumatic for all invoved. Ford is a "hard draw", meaning it's hard to get blood out of him. They generally only do foot pokes, but the tech often has to poke more than once and then "massage" the leg in an effort to squeeze more blood out. Ford, understandably, doesn't like this so one or both of us, during the process, are holding him or holding him down, and holding his soother in - if not for comfort, to muffle the loud crying. Once it's over, he's fine. But it's 5 minutes of hell for everyone!

By the time the tests were complete, an intesivist from ICU came up to see him and said she'd like to take him back downstairs and put him on to high-flow (breathing support) again while they figure out what's causing the work of breathing.

This was dissapointing, for obvious reasons I'm sure. We'd quite settled into our room on 3M and Nick had to make a couple trips to the car to move us out. And just this past saturday, Dr. Sanatani had said "if things go smoothly, you could be going home at the end of this week". Well this is what he'd give as an example, I'm sure, of not smoothly. The steps we would have been taking this week - working on bolus feeds and oral stimulation along with our training of administering his drugs, have all been put on hold.

Which brings us back to what is wrong. We don't know exactly yet. But the general consensus is that he has some kind of "bug". There are shady patches in his left lung on his chest x-ray. Which could just be fluid, could be infection, but waiting to find the results of the blood and urine cultures could lead to serious illness if not treated pre-emptively, so they've started him on antibiotics as if it were a respirtory infection.

The antibiotics can therefore be both a diagnosis and a treatment - if he gets better in a day or two, the antibiotics worked and we know it had to have been a virus. But since they started the treatment at the same time as they started taking samples to culture, we may not know what virus he had. A moot point really.

Today he is quite obviously under the weather. They started a second antibiotic after we noticed extreme listlessness. Recall a few paragraphs ago the description of the blood work experience? Well today they had to do the foot poke and a vein draw. He didn't even wake up for the foot poke/massage. He woke up for the vein poke, but just slowly blinked his foggy eyes at us. Yikes. We liked it better when he screamed through it all.

For a few waking moments he blinked, blew bubbles and whimpered. Heartbreaking! He has otherwise slept all day, which is good. Hopefully what ever he is fighting in there is giving in to rest and drugs.

Meanwhile, there has been growing concern about narrowing in his aortic arch. The recent echo shows that, since the CT scan, the narrowing has increased slightly, as has the speed of the blood flow (a rate that is supposed to be 150 per was 200 and is now 300). This is also evidenced in the very weak pulses in his feet. This narrowed aorta is also compromising his breathing, though after the super drowsy-ness of today, I don't think anyone is disputing that he has an infection. But once that clears up, the aorta problem remains. Dr. Human thinks Ford will have to have an aortic catheter balloon inserted to clear the blockage. This procedure is done through the femoral artery. This is yet another detour in Ford's recovery.

How did this narrowing business happen you wonder? During the Norwood procedure Ford's aorta was enlarged by grafting tissue from his pulmonary artery on to it. The narrowing is caused by scar tissue from that graft.

Deb, the "ICU liason" told me, when I said he had yet another infection, to "get used to it". Our poor Ford is so complex and fragile - and thus so susceptible to little colds or flus and they can cause a lot of trouble for him. Which is to remind everyone out there to wash your hands! We must be vigilant!

We must also now return to Ford's bedside. I hope our next post speaks of return to rooms with windows and clear lungs. A bientot.