Sunday, March 15, 2009

The kindness of strangers. And Friends. 1 week 2 days Old

Patrick is "Stable". No one is saying much about prognosis, waiting to see how he recovers after a couple of days on the ECMO. He does appear to have at least minimal organ function in his liver, kidneys, and brain - good news. But not a guarantee. We are hoping and praying as hard as we can for the best outcome.

While the medical care here is outstanding, what has really made an impression on us today has been how kind everyone is.

We've been receiving email and comments by the bushel, including some from people that have been in the same or similar circumstances. It's good to know that while it is risky, many kids have been through this and come out OK.

In the early afternoon, some Thai friends of ours stopped by unannounced, with fresh fruit. Pui was able to speak Thai beyond a grade-school level with a very nice complete family - Mom, Dad, Son, and Grandma. They have some local Thai restaurants that are really good - Noppakao in Juanita and Silver Spoon in the Trinity area of Redmond.

While we were all talking, the Mom of the baby Pat shared a room with the first night after his surgery came. She had a little angel with Pat's name on it. She gave it to us with her best wishes, completely out of the blue. Very thoughtful. We later hung it beside Patrick along with a Buddha image given to us from our friend Elle back in Bangkok.

I went back to sit with Pat some more, and after a short period of time the CICU desk called that there was a package there for us. I went and found a bag full of food with my name on it: "Rob Mullarky, father of Patrick Mullarky". I found no "from" message. The food looked really good, though I still didn't have much of an appetite. Both healthy and yummy, a rare treat. It felt really nice receiving it, actually. A little like a Secret Santa gift after a bad day.

I put the bag away and returned to Pat, musing about how nice people were, when I got paged again - another visitor. This time it was the Rev. Peter Luton, the man that married Pui and I not quite two years ago. He sat and talked with me for a little while, and we were shortly joined by Pui. Peter was great, as always. When he left us we were both feeling better.

After spending a little more time with Pat, I went upstairs to take a nap. I slept like a log for about three hours. When I woke up I checked my email, and discovered that our Secret Santa was Wyndi and her husband Steven (not David! Sorry about that! - Rob) the parents of Izabell (see her blog here). Pui and I were beginning to feel a little hungry, so we decided to try some of the food they brought us.

It appears that, when you are stressed and scared, "a little hungry" actually means "ravenously hungry". The food was as delicious and healthy as it appeared. Pui took one taste of the first dish and said "They must know I'm Thai." Bullseye, guys. ;-)

Just now Pui just told me that they are going to start Pat on Lasixs (a diuretic) to try and coax his kidneys into working a bit better. The doctor told us that this is not unusual behavior for a baby's kidney after a cardiac arrest episode like he had. I find it both reassuring and a little disturbing that they know what is unusual for infant cardiac arrests.

Pui and I plan to sit by Pat a little longer tonight, then turn in before it gets too late. We are feeling a lot better today than we were yesterday at this time. Our baby is in dire straights, but there is hope, and he is in the very best care. Heck, just look at the picture below:


If you look closely, you can see Baby Pat laying on his back in the center of the spider's web of tubes and wires. The ECMO unit is the stand on the right. I had envisioned it as a big box, maybe with a few tubes feeding into it's mysterious innards. In fact, it's a number of components all plumbed together with tubes and watched 24/7 by a dedicated technician. Very impressive.

If you don't mind alarming photos, the next picture is what Pat looks like now. Or rather, as he looked at about 1:30 AM last night, but there has been little change since then.


The ECMO tubes are the big red tubes. They take out, oxygenate, and pump back in his blood. He is very swollen - if you leave your hand on his head with just a little pressure, after ten minutes or so you will squeeze some of the fluid out of his skin there: when you take your hand away, you leave an impression. It's more than a little unsettling. I've started moving my hand every minute or so. His little ears are all squeezed together by the surrounding skin swelling. When he's older, he going to have to become pretty darn overweight before I start becoming alarmed.

OK, about time to go sit with Pat awhile and then say goodnight.

5 comments:

  1. So glad he's stable. May he continue to be stable and to improve.

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  2. I hope you see some improvement today. Thinking of you.

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  3. hope Pat has a good day and counties to show you how strong he is~Wyndi Steven and Izzy

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  4. hoping that Pat has a good day (and mom and dad) Stable is a good thing.

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  5. Good to hear that you guys feel better and Pat is stable.
    Hopefully, he's getting better soon.
    I pray for him too.

    Nong Tuang:D

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