Jackson Update – CICU Day 4

Jackson has done great today.  Last night they moved him from one room to another, because of several equipment problems.  The move seemed to do the trick, because they haven’t had any problems with the monitors since they made the move.
After the surgery they continued to monitor his Hematocrit and blood gases very closely, and made some changes to supplemental blood he was getting as well as adjusting his ventilator settings.  It amazes me how dialed in these clinicians are.  They are so good at what they do.
The hospital provided us with a sleep room, right down the hall from Jackson’s room.  I was a little surprised to find it was only a twin bed; I suppose it’s a good thing that Megan likes me.
We woke up and came to see Jackson about 7:00 AM or so, spent just a few minutes and left so the nurses could do shift change.  We went back to sleep for a couple hours and got up and showered then spent a couple hours sitting with our little man.  I started thinking about when I was in Boy Scouts, and we would sit up late at night staring at the campfire.  We would have conversations about why it was so interesting to stare at fire, but none of us could ever come up with a reason.  I have found the same is true with Jackson.  I find I can just sit and stare at him for hours; but for one very good reason- he is mine.  I can’t get over the fact that I have a son.  Every time I think about it, I grin from ear to ear.  How lucky am I that I have a little boy that is such a fighter.  I know Jackson will do marvelous things in his lifetime.  He has already done so much in his short three and a half days.  He carries such a strong spirit with him.  I am continually amazed at how much he is teaching me.
I wasn’t sure how to write about these updates so I’ll just throw them out one line at a time…
  • The Dopamine drip Jackson was on (to help regulate his blood pressure) as of tonight has been turned completely off.  This is a great thing, as it means his body remembers how to regulate it’s self.
  • They were giving Jackson an IV form of Nitroglycerin.  They were giving it to him to help keep his coronary arteries open.  They have completely turned that off as well.
  • The Milirnone (similar to the Dopamine) has been turned way down.
  • He is still on a little bit of Calcium Chloride to help regulate some metabolic processes; so we’ll have to see about what happens with this in the next day or two.
  • Jackson’s chest will likely be closed tomorrow- a great thing!  I really wanted to be able to watch them close it (as they do it at the bedside) and they really didn’t want me there- I asked.
  •  Hopefully in 4 days or so, they will be able to extubate him; meaning pull out the tube that is breathing for him. They have his ventilator set up to allow him to breath on his own when he can.  When he falls asleep or “forgets” to breath, the machine will do it for him.  They are slowly weaning him off of it.
He has been super active today.  We got some really cool pictures of him looking around.  When we came back to see him tonight he was super tired.  He didn’t really open his eyes at all.  I thought it would be a good opportunity to take a few pictures.  There is a small light on the camera that comes on momentarily to allow the lense to focus (it’s not the flash), when it came on he really didn’t like it.  I didn’t know a kid that was only 4 days old could give a look that dirty.  It was the funniest thing.
I have posted a few pictures and a video below with some captions of what has gone on yesterday and today:
Jackson has finally started to open his eyes and look around.  This was tonight about 9:30.
Opening his eyes!

 

Jackson at the peak of his care thus far has had 15 IV pumps with a variety of medications, 3 chest tubes, 2 central lines, 1 central venous pressure catheter, 2 arterial lines, 2 peripheral IV lines, 1 foley catheter, two sets of internal pacing cables, 3 EKG leads, 1 cerebral oxygen monitor, 1 renal oxygen monitor, two temperature sensors, 2 end-tidal CO2 monitors, 1 air temperature monitor, 1 Ballard suction device, 1 endotracheal tube, two parents that love him more than life it’s self and a whole fan club of family and friends back home.
Right before we left him in the capable hands of the surgical team, he finally managed to get one eye open.  Prior to this we weren’t sure there were eyes behind those lids, as he had never opened them.  He gave us a little wink and I was lucky enough to get a picture of it.  Love this little guy.
Megan giving Jackson a little love before they wheeled him off to fix his perfect little broken heart.
He is a trooper!

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Posted in Farmer Family, Jackson's Heart Story
3 Comments » for Jackson Update – CICU Day 4
  1. Steph says:

    I literally drained my phone battery watching that video so many times today 🙂 Give that little boy some love from his auntie!

  2. The Henderson Family says:

    Such a handsome little man! (Jackson of course!) thank you so much for keeping us all updated! You have all been in our thoughts and prayers!! You guys are such great examples of faith and strength for us all!

  3. Karli Ann Blum says:

    I don't know what to say, other than, Wow! Your little family is AMAZING!! Thanks for your awesome examples of how we need to live each day with gratitude and love. Thank you Farmers! Keeping you in my prayers.

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