Once more with breathing

After a very calm and stable night/day, with his stomach settled and his feeding rapidly increasing, they again decided to try and extubate Ford. He had been weened down to normal room air (no oxygen assistance) and the rate of breath that the machine was supplying him was as low as it could go (which i believe is 6 per minute). He was doing very well on his own.

Extubation is a little different (at least for him) than just pulling the tube out and shouting hurray. He's still hooked up to the machine but the interface is different. Instead of a tube down his airway he has a little two-pronged device which sits against his nose and blows air up it. They call it CPAP (constant positive airway pressure).

He hated it.

I hadn't yet seen him as mad he was after they made the switch, his systolic blood pressure was up from the low 60s (where they want it) to 120, which is incredibly dangerous for him as it could burst the shunt in his heart. He was freaking out, going purple with rage and was writhing and struggling and really giving the nurses a hard time. For a while there were three of them pinning him down while the RTs adjusted the new rig. Because he's been intubated for so long we were told it would take him a while to recover the use of this vocal cords, which in this case was probably a blessing, so all he could do was grunt and wheeze. Sounded (and even looked) a lot like The Exorcist.

So this went on basically most of yesterday, them trying in vain to settle him and him going crazy every time anyone even gently touched him. Last time they tried he struggled a lot but very quickly failed to take up the challenge of breathing and so they intubated him again about 2 hours later. This time, although struggling, he seems to be coping (he's on to about 20 hours) and so they are hesitantly waiting. This morning during rounds we were told he was hanging on by his fingernails, meaning they are probably going to put him back on support again. But, we were also told that someone made a mistake yesterday, that he was supposed to be put on an assisted CPAP (where they supply constant air/oxygen and also give him bursts of increased pressure to prompt him to take bigger breaths) and hadn't been. Whether or not it would have made much of a difference is unclear, but in their step-down plan they jumped yesterday from 3-1, instead of 3-2, which probably made it more stressful on him then it had to be.

It sounds like he will eventually be intubated again, but that it isn't really a problem yet. The fact that he has lasted so much longer is a good sign that he is getting stronger and more capable if tolerating it. As frustrating as it is for us to get good news and then get it taken back, we are happy that he's a fighter, even though his fighting is in this case counter-productive (if he would relax he would breathe a lot easier).

Today we are instructed to not touch him at all, even the nurses are refraining from touching him and he is covered in a little blanket tent to keep as much of the noise and light out as possible.


Yesterday we met with one of the cardiology students who is going to be training us on Ford's home care, for whenever we get out of here. She brought a big black bag of gadgets (really big) and spent sometime showing us how to work them. The thought that we will be bringing part of the ICU home with us was pretty overwhelming and I started to freak out. With him being as irascible as he is, the thought of having to administer injections of blood pressure medication, insert feeding tubes through his nose into his intestines, measure daily oxygen saturation, weigh and constantly watch for signs of heart failure (that could be prompted by his tendency to panic), be prepared to instruct emergency staff on how to treat him, in the event we do need to make a run for the hospital (his condition being so rare), on top of all the regular drama of early parenting, she left us with our heads spinning, utterly drained, and feeling pretty hopeless.

What the heck have we gotten ourselves into?