Recovering at home


I’m happy to announce some tremendous news! Patrick made a miraculous and quick recovery after my last post. The day after my last post, after much fasting and prayer by friends, family, and even people we don’t know, we walked into the ICU to find Patrick smiling and playing in his crib. He turned his head, saw Brian and me, and smiled. Over the next couple of days he continued to make steady improvement.

They gave him some steroids which helped reduce the swelling in his throat and his breathing became much less labored. Ear, nose & throat came and looked at his upper airway and determined that his vocal chords were ok and that, although he had swelling below them, that there wasn’t any evidence of scarring or other permanent damage. The only limitation that they placed on him was that he not be reintubated except for life-saving procedures for the next 6 weeks.

Neurology also came by several times in that day and watched as he progressed, began interacting with me, focusing his eyes, moving his arms and hands more normally… and in the end decided that there didn’t seem to be any evidence of a problem there that would merit further attention.

Next, they scheduled for him to go back to Special Procedures and to have another PICC line placed. Because his antifungal medications aren’t compatible with TPN, he needs two points of access. Amazingly, they were able to get a double lumen PICC placed. This means that there are essentially two tubes wrapped into one and placed in the same vein… instead of having a line in each arm. With that in place, they removed all of the other lines in his body.

The PICC made him sore, but by Thursday that was their primary complaint and they decided to transfer him out of the ICU into the infant unit.

Also Thursday he had a swallow study done. This means that they mixed contrast into apple sauce and put some him a bottle and had me feed it to him while they watched it go down his throat on floroscope. Having fasted or been fed by G-tube for 2 weeks, Patrick thought this was heaven and was furious when it was done. The end result was that he swallows perfectly… pretty amazing for a kid who is barely allowed to eat.

That confirmed, they started giving him bottles again. However, his gut had gone unused so long that it’s still working on recovering. We started out with just 2.5 cc’s every 3 hours…that’s about 1/4 tsp.

Saturday night Patrick’s PICC line got tugged and the vein started to swell. He woke up in the middle of the night and really didn’t sleep the rest of the night. We worried that it might need to be replaced again… but with some rest and elevation and heat, it slowly started to show signs of recovery.

Finally, Monday his electrolytes, stool output, feeds, and PICC line were all stable enough and at noon that day we were able to bring him home.

You should have seen how big his eyes got when we pulled into the garage! I was all grins and giggles when we walked into the house. As per tradition, once we got business squared away, Patrick and I curled up in my bed and went right to sleep. He slept till 5:30, completely peaceful.

We’ve been home for a few days now and are finally getting back into the swing of things. Family and friends have been great – bringing in meals and coming to sit with him during the day so that I can get things caught up around the house. He’s having a hard time getting used to sleeping through the night again. He doesn’t like being on his back since spending so much time in a bed. And I’m having a very hard time getting used to caring for a double lumen picc. But we are slowly moving forward and today, for the first time, has felt like routine again.

He needs to be seen ASAP in Seattle so that they can determine if he can be put back as status 1 on the intestinal transplant list. They are also looking at possibly listing him for a liver-intestine transplant, as well… since the problems with his spleen could be evidence of scarring in his liver. We have a trip planned from Wednesday through Friday next week… with appointments most of the day Wednesday. This will be my first time travelling alone with Patrick. It’ll be a process, I’m sure… But hopefully well worth the effort. If nothing else, it’ll be good practice for me.

It’s hard to believe that just weeks ago we were sure we’d lost our little boy. He has so much light and life in his spirit right now. He’s pretty weak still and we’re working on getting him back to eating what he had been eating before… And both of us have to get used to that line in his arm. But things in this house are calm and happy. It’s so good to be together… and so good to be home!

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