He's faithful through generations. So why would He fail now? He won't!
“Rain came, wind blew
My house was built on You (this is the reason I'm standing)
I'm safe with You
I'm gonna make it through (I'm gonna make it)
Yeah, I'm gonna make it through ('cause I'm standing)
'Cause I'm standing strong on You (I'm gonna make it)
Yeah, I'm gonna make it through (my house is built on)
'Cause my house is built on You (one more time, y'all, sing)”
Song of the Day: “Firm Foundation “ by Maverick City Music.
Daddy was on duty yesterday afternoon through this morning. He stayed with me last night as Mommy went home for a comfortable and good nights rest. She also got to spend some much needed time with Hero and Phoenix.
4:00 AM - Respiratory came to place her on SBT from 4am - 6am.
Doctors/nurses stopped her nutrition in preparation for Extubation
4:50 AM - Labs are coming back… They’re still abnormal but less abnormal (ie White blood cells are still high but lowering)
Respiratory and nurse explained that Sevyn had been very feisty this morning while prepping for SBT. OF COURSE…SHE’S A FIGHTER!!!
5:05 AM - X-Ray was performed
6:30 AM - More Tylenol was given for fever (102.2 degrees)
The nurse drew blood for another blood culture to check for any new infection, along with a sputum culture (lungs) to make sure nothing is growing in her respiratory system
6:50 AM - Ortho came to check-in
More nursing support is needed to change dressing looking to do it in an hour
8:15 AM - Ortho changed dressing on the right-hand
Overall the wounds are healing nicely and the procedure is doing what they wanted it to do. The swelling is going down and appears there is good blood flow to the hand/palm. A week or two before knowing how much vascularity is left in fingertips
The hand looks good. But fingertips still look dusky
8:43 AM - MORNING ROUNDS :
Sevyn had 2 fevers overnight. Doctors will send cultures out for testing both blood and chest. They will place a catheter to collect urine for testing. A new venous clot was located in her neck. Doctors want to look into why she is still clotting while on blood thinners however, said to let this one rock out. She appeared to be agitated overnight but this could be due to her weeing off Fentanyl and maybe withdrawal but will remain on it to calm her down.
Doctors still plan to extubate however due to the latest discovery of clots they want to get back lab results to ensure no new procedure would be needed to perform. The doctor would like to get a urine culture.
Will need penicillin for 8 weeks.
With fevers and clots, doctors feel more work needs to be done before removing the breathing tube. The plan is to still remove it, however just waiting for a few more tests and to speak to Hematology.
They will send more infectious studies to find out what could be going on.
Urine, Blood, Chest, and Fungi cultures along with stool samples to see if anything shows up. In the meantime, they will give her antibiotics to help treat any new infections that could be taking place.
If a positive blood culture they will have her do a Transesophageal echocardiography (TEE). Which is an ultrasound technology that provides highly detailed images of the heart and its internal structures.
Possible coming off Fentanyl or coming down on dosage. Monitoring Withdrawal Assessment Tool (WAT) score every 4 hours to see where she’s at.
More conversations need to be held with the different teams before proceeding with extubation.
10:20 AM - Catheter has been placed to collect a very small amount of urine for testing.
Rheumatology came to visit. They informed us that the Adenosine Deaminase 2 Deficiency (ADA2) test was sent off and came back negative which clears her from that condition.
Sending blood work for HLAB51 - Behcet a rare disorder that causes blood vessel inflammation throughout your body.
Per the doctor, they do not want to leave any stone unturned so thats why they’re testing for basically everything to look for things that could cause a stroke or blood clots.
3:30 PM - She’s awake after a long slumber due to sedation medication, they gave her to calm her feistiness down from this morning.
IS THAT A SMILE BABY GIRL? ARE YOU TRYING TO SMILE FOR US???
WHAT DO YALL THINK?
3:51 PM - Occupational Therapy - Working on moving her fingers and her limbs!
4:30 PM - Extubation - Her breathing tube is out!!! :)
5:30 PM - Hematology visit - one of the labs came back today, and Sevyn has a genetic condition called Factor V Leiden, which is a mutation of one of the clotting factors in the blood.
This is only one piece of the puzzle. They are confirming she has this genetic condition, but that something else is also contributing to her symptoms. There are still some tests that we are waiting for.
For now, the treatment is to continue with a higher coagulation medicine (blood thinner).
7:35 PM - FINALLY I can wear some clothes. I’m all fresh and clean…
And yes… I know i’m looking cute with my bow and matching onesie…
“Hey Mommy…. is this how you do a passe?”
Check back for more updates throughout the day!
Song of the Day: “Firm Foundation” by Maverick City Music
