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Liz Stokes

A dream and a nightmare

I’m just not sure really which is which over the last couple days. Yesterday my wonderful mother in law came down to spend the day with Carter which turned into staying overnight and well into the evening tonight. Sometimes it’s just so hard to stay away from the world’s cutest babe. Other times you realize that when you say goodbye or look at him it might be the last time you do so…

Yesterday was a lot of up and downs and trying to get Carter’s circuit aka VAD in order. It took a long time to get it to a stable place but during the afternoon today (over 24 hours later) they seem to have slipped into a good flow. Not the best but still better than they’ve been in a long time.

His hands and feet are scary. I’ve never been so worried about extremities. His right hand is purple and black. His right ring finger tip and pinky finger tip are really black. Necrotic. There’s nothing. No blood flow. Plastics (as in plastic surgery) came up and gave us the news that they’re now joining our team. Then they gave me the reason why. It’s more than likely they’re going to have to amputate the fingers but at what point or where on his fingers they’re not sure.

It’s such a double edged sword. 1. He needs the medicine and the cannulas (VAD tubes) that constrict his red blood cells in order to live. 2. I now know where the phrase “life or limb” came from and it gutted me. Like he’s not already different enough. We’ll cross that bridge when we get there. He and his Uncle Ron will be twins. I’m just praying that the rest of his fingers continue to get blood flow, his left hand improves, his left middle finger is starting to look like his right hand did yesterday, and his toes are starting to turn blue as well. It’s all “flow issues” and there’s nothing that can be done to prevent it or stop it.

Well there are two ways to stop it. 1. stop the two very low drips he’s on that help the blood flow through the cannulas. 2. Remove the cannulas. We can’t do either until we have a new heart.

Grandma has been massaging his limbs a lot today and the holistic health nurse came in this morning and gave him a full body massage to help disperse the fluids. Like I said it won’t stop it but maybe it’ll help keep it from getting worse? We won’t know.

So take from that what you will.

Moving on to the next surprise. Carter started vomiting up old blood. Sometime during or after surgery he suffered injury to his stomach, esophagus and/or throat and bled quite a bit. He woke up today just enough to tell us his tummy was hurting and vomited multiple times dark, old blood. I think I peed my pants with fear not knowing why or what was happening. The team keep reassuring me that the issue has cleared itself up and he just needs to clear out either by poop or puke. They put in a replogle to help ease his belly and suction the yuck out for him.

His 4a renal came back higher which is not good. It can be a sign of infection or damage. He’s also only put out 9mls of urine today and they would like to get an average of 8mls an hour. It’s a start and he’s doing it on his own.

The doctor I don’t care for at the moment who really does have our best interest at heart is on tonight and I’m not fond of that either.

Work called too and I really need to get Carter stable so I can go back to work. They’re not pressuring me but I need to get back to keep my paycheck coming and I need to keep my job/position. I just wish Carter was in a more stable place so I could feel more comfortable going back. I know he’ll be in great hands but when there’s a lot going on and things are day to day it’s a worry for me but yet I sit here every day worrying about my aides and my students. It’s hard. Hard to focus on work and hard to focus on Carter.  I posted a meme today that said “Sometimes I just want someone to hug me and say, “I know it’s hard. You’re going to be ok. Here is chocolate and 6 million dollars.” It’s just so stinking bittersweet. I love my students, my job, my school, my team in my classroom, and my coworkers. I know they don’t like it when I’m gone and it hard on them right now but it’s just so hard to leave Carter in the state that he is.
I’ll do it because I know it needs done and we’re a two income family and I DON’T want to lose my job but my heart will be an hour and forty five minutes south with my baby boy and my mom.
Again no one is pressuring me but myself and everyone has been amazing!

I’m sure I’ve blacked out the other dark details… If there are any.

SO here’s some light!!

Good news because there is some! He’s slowly being weaned off the nitric oxide. They’ve also cut back by half on his ventilator settings. Meaning his lungs are healing and doing their job better!

The flows are currently up on the circuit (VAD). That’s good, we want them up and continuing to go up.

He’s coming down on his sedation levels and other med. levels.

Like all that I typed there is a really big awesome deal but it feels like the other stuff just trumps it and is essentially raining on my parade.

Carter also has two prominent lower front teeth. Grandma got to see them and feel them. It really was nice to have my mother in law here. I so loved watching her pray over him, love on him, sing to him, and nurture him. It was a blessing and I know he loved it too.

Jackson went home sick from school today. I pray it’s not the flu. Lydia is preparing for her first derby race on Saturday. She and Daddy painted her car tonight.

No pics tonight.

One comment on “A dream and a nightmare

  1. Nakia Sykes says:

    I’m praying with you guys, keep fighting Carter!! 🙏🏾🙏🏾

    Like

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