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Liz Stokes

OMG

Yep. That about sums everything up over the last couple of days.

Oh and more roller coasters.

Carter went back into surgery this morning to have the permanent VAD cannulas placed and to be hooked to the CentriMag LVAD and RVAD. They were able to hook him up utilizing his biventricle heart. So for the first time in his life Carter, temporarily, has a working two chamber pumping heart.

While they were working on his heart his lungs suffered a pulmonary embolism. Again. This one was not near as severe as the last one but still terrifying to say the least especially when we were told if there was any damage that we would not be proceeding and would need to remove him from life support. Once again Dr. Bryant to the rescue he stepped in and called the “other” doctor to inform him of what happened and how quickly Carter recovered last time from a much worse situation. That bought us another week but Dr. Bryant is positive his lungs won’t need the entire week before they heal and he can remove the oxygenator from the VAD.

I don’t know what to update. It’s scary. He’s deep in the woods and needs to come out. There are many issues going on.
Positives:
1. It worked. He’s on the VAD 100%.
2. They think his lungs will be healed in less than a week (see negative number 7) he’s on nitric oxide to help.
Negatives:
1. They’re still struggling to find the proper flow for him through the circuit.
2. His heart rate is through the roof. They tried to pace it down but it won’t come down. (It’s at 203.)
3. He’s lungs are still red. (Spit still has red blood as in new blood not brown blood as in old blood.)
4. His urine has a light pink color to it. (Most likely from bypass or so I’ve been reassured. It still scares me.)
5. He’s cold. Sitting at 35.8 (which is also normal from bypass.) They have him under the bear hugger warmer.
6. His fingers look like they have frost bite. Starting to wonder if he didn’t get pinched or hurt in the OR somehow because it’s his ring finger, it’s just the tip and his nail bed, and all the other fingers are great in color. His left hand fingers have color improvement already.
7. He had a pulmonary embolism. So they added the oxygenator to his VAD. It’ll be at least a week before we can be listed for transplant.
8. Chest tubes need to keep draining.
9. Clots need to stay nonexistent.
10. Carter needs to keep urinating on his own. At least 8mls per hour or as preferred more than that.

Rob left this evening to go back to work tomorrow to help him save up time for when transplant day/week comes. I’m extremely emotional over this because the thought of being alone and having to leave Carter to go the Ronald McDonald House so we don’t lose our room is a struggle for me but yet I don’t take kindly to strangers or people outside of my family coming to help out. It’s nothing to do with anyone, I’m just very much an introvert. Luckily my mother in law is coming for a visit tomorrow.

Regarding the last two pictures- the one of the dog is what a bear hugger is.

As for the picture of my wrist with my bracelets- the blue bracelet in particular. Say a prayer for my precious friend’s daughter. She has been battling cancer since she was born. Right before Thanksgiving after years of prayer the most amazing words were finally heard “no evidence of disease”. She goes in tomorrow for another scan to be sure that she is still clear of all cancer. Fierce Charlotte sure would appreciate those prayers and prayers for her family as they wait for the scan results. “Fighting with Fierce Charlotte” is also on Facebook.

Also on a very somber note, pray for Adalyn’s family of “Prayers for Adalyn” on Facebook. Her family sadly had to say goodbye to Adalyn over the weekend and my heart breaks for them and their family. She passed away while waiting for a heart. It’s a reality we as parents of CHD warriors have to face and think of on a sometimes daily basis. IT’S JUST NOT FAIR!

One comment on “OMG

  1. Tiffany Benjamin says:

    Thank you for keeping us updated… I look at my Instagram everyday for updates on carter. I pray for him everyday. I feel like I know him now. I’m hopeful and have faith he will be just fine.

    Liked by 1 person

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