“You have been so, so kind to me”"
“Before I took a breath, You breathed Your life in me
You have been so, so kind to me
O, the overwhelming, never-ending, reckless love of God
O, it chases me down, fights 'til I'm found, leaves the ninety-nine
I couldn't earn it, I don't deserve it, still, You give Yourself away
O, the overwhelming, never-ending, reckless love of God”
Song of the Day: “Reckless Love” by Cory Asbury
8:00 AM - Morning Rounds
The blood culture came back positive, indicating that she has an infection in her blood. They will continue antibiotic treatment. They will repeat the blood culture. If the blood culture comes back positive, they will schedule a TEE to look closer at her heart and see if there are any clots. This means she might have to get the breathing tube again :( …prayer break.
Positives: No fevers yesterday or overnight, she’s breathing well, has stable blood pressure, her heart rate is stable, and her urine output is good. The respiratory culture and urine culture have not grown anything.
8:20 AM - Breathing treatment, nebulizer
8:25 AM - OT came to do some physical therapy to get her body moving and also to ensure she’s still on track for her milestones as an infant. During the therapy, she was able to turn to her side which is on track for her age.
They’re focusing on the movement in her hands and arms. Doing certain movements can trigger her to have movements in her hands. This is important for her due to the procedure done on her right hand.
Sidelining (having her lay on her side) can get her to move her arm and shoulder more and build strength in the muscles that aren’t used while lying on her back.
Overall assessment from OT - she’s looking good and moving more day by day in her fingers and hand. They were happy to get a lot of activity from her despite Sevyn not being a happy camper about it.
They will come in once a day (Monday - Friday) and encourage a lot of active movement. Over the weekend we will be in charge of performing the PT
(Laying her on her side, tummy time, chair, arms, legs etc…)
Continue to do the things we would normally do at home with her for her development.
Physical Medicine and Rehab (PMNR) will be contacted along with Speech Language Pathologist (SLP) for a Speech consult
Later in the day, OT will come by to get her fitted for a splint for her right hand.
9:35 AM - Sevyn started her upright sitting and should do this for up to an hour as long as she can tolerate it.
10:35 AM - Sevyn stopped her upright sitting. She did really well and almost fell asleep in the seat.
10:45 AM - Hematology came to check in… try to get repeat ultrasounds of the neck arms and legs possibly today. To get an overall sense of the progress of clots.
11:50 AM - A wound culture was performed for any potential infection that might show up. This will help with the blood culture., if the findings from both match then it can help locate the cause of the new infection.
12:00 PM - Breathing treatment, nebulizer
12:05 PM - EKG was performed due to one of the medications she is taking that can affect the rhythm.
12:15 PM - They removed the nasal cannula for her to breathe the room oxygen.
12:30 - OT Returned to do a consult for her splint. The final decision was to wait until Monday due to OT not being here on the weekends.
1:30 PM - OT Returned again to examine her hand. They’re suggesting the dressing on her hand be done over again.
1:50 PM - Rehab Doctors stopped by to meet Sevyn. OT changed the dressing on her right hand
2:36 PM - A Speech Pathologist came by to assess Sevyn to see if she’s ready to take a bottle/breastfeed and to make sure her airways look good. Checking to see how she is sucking and swallowing - checking for coughing and congestion. 15ml of formula twice a day.
5:30 PM - Ultrasound was performed to get new imaging of veins and arteries to check on current clots and any potential new ones. Due to how active Sevyn was , it was difficult to complete all three areas they were wanting. However, they were able to get 2 of the 3 which is better than nothing. Tomorrow they will come back to get the right arm.
Today was a quiet day as we are waiting results from more testing that have yet to return.
Once the doctors complete their evening rounds we may have more updates.
Until then… Have a great night and be sure to check back tomorrow morning
#stayS7RONG
