♥Day 5♥

Apparently there is a closet of dress-up here in the PCICU. Full of outfits, headbands, and bows.

Each morning Becky’s headwear grows in size. At this rate, she will be wearing a turban by the end of the week.

Yesterday was very peaceful for Becky. She spent hours on her tummy and seems happy that the nurses found a comfortable position for her.

She also had an echo. It may have been the most beautiful image I have ever seen: a four-chamber heart with blood flowing in one direction, the surgeons’ patch in the middle stitching everything back together. I thought I might cry but instead broke out into a huge smile. Too bad my mask covered it up.

Her mitral valve is working well. There is regurgitation from the tricuspid valve due to the high pressure in Becky’s lungs. Children with Down syndrome tend to have higher lung pressures. The team continues to address this problem with medication. Overall the echo looks great and both Dr. VB and the surgeons are pleased.

Unfortunately, there has been a color change in Becky’s chest tube output which indicates chyle. My milk will now be tested for fat content. This will help determine what kind of feeds Becky can tolerate going forward. This finding continues to baffle Dr. VB as chyle was present at the beginning of surgery but didn’t appear again until after almost 48 hours of continuous feeds. Nothing like a good mystery.

Becky’s cardiac function was boosted yesterday and her kidney function has decreased. This is an encouraging development. Because she receives diuretics, the team watches her kidney function closely to ensure her kidneys aren’t working too hard to filter her blood.

Becky continues to be on forced air and needed an increase in oxygen overnight. Her chest x-ray looked better but there is still an area of her lungs that won’t open up. She is receiving CPT (Chest Physical Therapy) every three hours now as well as a nebulizer to help drain fluid from the lungs. Becky likes the pounding but not the vibration.

Dr. VB is a superhero, finally transferring Becky to another doctor after caring for her around the clock since Wednesday. He assured me that he will continue logging in and watching her closely until he returns to the PCICU on Thursday. He anticipates that she will still be here.

We have a quiet day planned. Becky expressed interest in the Tampa Bay/Green Bay game. And I was shocked to discover that the Buffalo Bills are still in the playoff picture. So we might watch that game too. I enjoyed a Face Time call with Sam’s parents this morning and I look forward to a few more family calls this afternoon.

Oh, and some more of this.

10 thoughts on “♥Day 5♥

  1. Good news far outweighs the bad news. I think Becky is looking at you and wondering where your headband/ bow/ turban is in that last picture 😉
    Prayers continue for you All❤️

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  2. Your posts make me smile Kathleen! Thank you for the updates. So happy Becky continues to improve. Continued love and prayers being sent your way. XOXO

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  3. Love that Dr. VB is not only concerned about Becky’s health but her hairstyles, too! It looks like you are in good hands and that Becky is continuing to show that she is a bad a**!!

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  4. Becky looks fantastic in these pictures!! And that last picture of her looking at you is absolutely precious! She is quite the fighter! Love your updates!!

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  5. Thanks for all your updates, I look forward to them every day! I’m so glad Becky is making such good progress. She’s looking beautiful! Be sure to take care of yourself too and stay healthy.

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