God, turn it around.
“I'm calling on the name
That changes everything, yes
God, turn it around
God, turn it around
God, turn it around
All of my hope
Is in the name
The name of Jesus
Breakthrough will come
Come in the name
The name of Jesus”
Song of the Day: “God, Turn it Around” by Jon Reddick
Today marks three weeks at Children’s National Medical Center. We went to urgent care on 10/24/23 because Sevyn was in respiratory distress. Within the first week here, we discovered she had a UTI/Kidney infection, a genetic clotting disorder, a stroke, a seizure, and an injury to her right hand that caused swelling and discoloration.
Although a little cranky today (maybe due to lack of sleep), I’m happy to report she is doing much better. Her infection is gone, and hematology feels that her clotting medicine is in a stable, therapeutic place. And because she is doing so well, she can go home pretty soon.
We still have a long journey ahead of us with her right hand, an injury we feel could have been avoided. Continue to pray that God will turn it around and heal Sevyn’s hand completely. Our hope is in Jesus, and we know there is power in His name.
8:41 AM - Early morning check-up and meds
9:00 AM - Morning Rounds - we are getting out of here! They are preparing us to be discharged (hopefully this week):
condense the time of her feedings
switching from lovenox through the IV to lovenox via an injection
ortho should be stopping by today. they will be responsible for redressing the hand. Their specialized hand team will be working with Sevyn
training mom and dad on:
ng tube feedings
injecting lovenox
the central line will come out tomorrow if all goes well
9:48 AM - A little OT. Here’s what I am working on:
laying on my side, to help stretch out my obliques
rotating my head to the right, because the muscles on the left side of my neck are tight
opening my left hand
laying on my belly
11:30 AM - Daddy is here…. Not happy about her vitals being taken but at least she’s rolling to her side.
I love being silly with daddy.
12:30 PM - CASE MANAGER stopped by to discuss the next steps in our discharge process. They keep mentioning FRIDAY … so hopefully it will be FRIDAY - 11/17 room 717) . She will work on the orders that need to be made for all the supplies we need to properly care for Sevyn ay HOME. We will get monthly shipments filled with 30 days of supplies. She mentioned that she doesn’t anticipate us having to use the NG tube for more than the first shipment so …. WE WILL PRAY THAT IT WILL ONLY BE THE FIRST SHIPMENT FOR THE NG TUBE.
Sevyn LOVES to hear good news!
1:10 PM - NAP TIME!!!
2:00 PM - Ortho stopped by to mention that he and a hand surgeon will come to meet with us tomorrow and asked if I had any questions. I requested that our Navigation Nurse be present in the room while we spoke and he said it was not necessary. I mentioned to him that she told us to call her once he got here and he said he would e-mail her. I left it alone at that and just took note. There wasn’t much that was discussed that was worth noting. After he left I called our Navigation Nurse and left a voice message.
2:20 PM - SPECIAL VISITOR ALERT (COCO)
3:15 PM - Our Navigation Nurse came to talk about the meeting with Ortho. She was not happy that the Ortho doctor denied calling her and also did not email her like he said he would. I voiced my concerns and she said she will escalate it.
4:15 PM - Her shot was given and she took a mini nap
6:10 PM - Sevyn is still fussing/crying since waking up from her nap. Not sure if she is in pain or if it’s gas but she was given Tylenol. The doctor will be coming by shortly to examine her. The nurse was thinking it could be gas and she might be getting something equivalent to what GasX would do for adults.
Check back throughout the day for more updates
Sevyn’s Spotify Playlist