Recovery

Milo has made his home in the PICU these days, and is doing very well.  Yesterday, there were many changes that happened, so I (Amber) stayed the night to make sure that he did well.  I was so concentrating on Milo, that I didn't get a chance to update the blog.  So here is the update from the last two days.

Yesterday, it was determined that Milo was doing extremely well.  So well, in fact, that they wanted to make some aggressive changes to his support.  He had been on a painkiller and a sedative basically for his entire life.  This was helpful to keep him from fighting the ventilators so that they could do the work of breathing, and he could rest and heal.  Well, the doctors wanted him to get off of the respirator quickly, so he was completely taken off of the sedative and put on a weaker one, and his painkiller dose was taken down to a third of what it had been.  Although it sounds like a good approach, the painkiller is a narcotic, so a quick decrease puts him at risk for developing withdrawal symptoms.  We were very concerned about this, so we watched him closely for any signs.  Luckily, he did and is doing just fine with that.

They determined that he was doing so well with the decreased medications that he would be off of the respirator by the end of the day.  Also, an aggressive approach, I thought.  They said that if he rejected the new form of ventilation, oxygen through his nose with a device called a CPAP, he would have to be re-intubated.  They took the tube out from his throat at 8pm, and we and the nurse watched to see if he could handle it.  Again, he did very well.  He was much more awake at this point from being on reduced sedatives, and he was very angry to have this thing on his head, but his oxygen levels were even better than when he was on the ventilator.  Since he had the tube in his throat for so long, he still has a silent cry.  You can see on his face that he's crying, but there is no sound.  It's so sad.

He also was doing great stabilizing his own blood pressure, so he was taken off of the blood pressure meds he was put on after the surgery.  They also gave him a diuretic to relieve some of the swelling from around his eyes.  I'm trying to remember if anything else was changed.  All in all, it was a dramatic change from just a day before.  I chose to stay the night, just in case.

I was woken up a few times in the night.  Once, he was so upset having the CPAP attached, that they put him on a bit more sedative to help him sleep.  The second time, he had a chest x-ray.  And the third time, around 6:30 am, he was still so upset by the CPAP, they decided to switch him to a cannula, one of the nose prong things that you get when in the hospital.  This made him much happier.  And when I looked at him this morning, he looked like a normal baby!  His eyes weren't swollen shut, and I got to look at his beautiful blue eyes.  They had taken out his IV in the night, and were able to swaddle around all of his other tubes and lines, so he just looked like a regular swaddled baby!  It was amazing.  He still was on a bit of sedative, but was awake and moving and perfect.

Today, it was determined that he should rest after all of the changes from yesterday.  He did get his foley out, so he was able to use a diaper, but I think that was the only major change.  Ryan came by in the early morning, and we just hung out with him for several hours.  We each got to hold him again (yay!), and I can't wait to get the other tubes and lines out so that I can cuddle him.

There are still some concerns about his lungs, white blood cell counts, and adrenal glands, but they will be watching him closely, and we should know more soon if any of those things are actually issues.  He should be able to eat his first meal (very, very little milk through a feeding tube into his stomach) in a couple of days.  And they said that in the best case scenario, we may be able to take him home in 10 days or so!

So, things are looking up.  We are still trying to juggle our time between Milo at the hospital and Vivienne, which is so difficult.  But I think that they are both doing just fine.  We are just counting the days until the four of us are at home together.