12/12/2022
Fundraiser for Quinlee Shriner
This week we will be having a fundraiser for one of our babies here at Holston View. Quinlee was a student in our cribroom up until she fell ill this fall. Her family has been in and out of hospitals for months now trying to take care of this little angel. We will be taking up money this week for them to send before Christmas. You can make donations anytime to the office or your child’s teacher, we will also have a donation basket set up at our party on Thursday. On Wednesday we will have a small bake sale to also help raise money. If you would like to bring something for the sale that would be appreciated as well. We’re attaching Quinlee’s story to this letter. Above all else this sweet little baby needs your prayers!
Thank you so much,
Holston View Preschool & Daycare
Our lives completely changed on October 3rd when she stopped breathing and her heart stopped for 12 minutes. That was her first intubation.
Quinnlee was intubated on October 3rd and extubated on October 7th. She failed extubation 24 hours later and was reintubated on October 8th. She was soon transferred to Vanderbilt on October 13th and was extubated on October 15th and almost immediately reintubated 45 minutes later. She had another trial extubation on October 19 but failed again for secretion clearance on October 20th.
At this point in her Journey we had already gotten her diagnosis of SMARD.
4 intubations and 3 failed extubations. We knew the next extubation was extremely important because everyone kept acting like it could be her last trial. Quinnlee was breathing fine and adequately oxygenating during most of her extubations she just could not clear the thick secretions she had from having Covid, Rhino, RSV, Bronchiolitis, and pneumonia.
She was extubated again on October 25th. This time she was extubated with everything they could throw at her. Quinnlee didn’t tolerate the nasal mask nor the full face scuba bipap interface so she was extubated on the bipap nasal prongs. She also had a feeding tube and another OG tube passing through her nares. The OG tube was connected to intermittent suction to provide relief to her stomach. This helped remove excess air and stomach contents. The feeding tube was passed into her jejunum (part of her small intestine) to allow her to be fed without adding pressure in her stomach.
Quinnlee was also extubated onto a machine called a cuirass ( it’s like a turtle shell) they call it the modern day iron lung) it can provide noninvasive ventilation. She was on this continuously with constant negative pressure to keep her lungs inflated. With this machine she was able to tolerate her airway clearance treatments every 2 hours whereas before she was never able to tolerate it. Every 2 hours the machine shakes which is her vest treatment to break up all the secretions in her lungs and then the machine provides a cough assist by pushing air in and pulling it out but instead of this being done with a mask on her face (she never tolerated this) it’s provided around her chest. This is suppose to move all the loose secretions to the upper airway inducing a coughing mechanism. Quinnlee required deep nasal trachea suction and deep oral suctioning prior, during, and after each treatment. During the treatment she is also getting albuterol and 3% saline nebulizers. Eventually she was able to be changed to every 4 hour treatments and then to every 6 hour treatments. She now only requires those treatments three times a day.
Within about a week Quinnlee was able to be weaned to pressure support only on her bipap machine and eventually to what they call high flow through a regular nasal cannula during the day with pressure support only no oxygen. She is now currently on no support during the day and wears her bipap at night with a pressure support only to help refresh her lungs and to make sure that she breathes at least 18 times a minute. This is to insure her lungs don’t collapse. With her condition she has poor tone and they don’t want to risk her not breathing deeply enough at night during her REM cycle.
She is still unable to eat by mouth and is only able to tolerate 3 bolus feeds per day and has a continuous feed at night for 9 hours to ensure she doesn’t loose weight. She is still adjusting to this and has days where she vommits. Quinnlee was fitted for AFO braces while here and wears those intermittently throughout the day to help her feet get back to a neutral position as she has foot drop right now. She will also have hand splints. She is tolerating sitting up in a chair reclined or her car seat for spurts of the day but of course is more comfortable on the bed.
To go home we need a lot set up. Currently we are waiting on her cuirass to be approved by insurance because we refuse to leave without it. It’s the only thing that has kept her extubated.
We will go home with her home bipap machine, portable suction, a pulse ox machine, a feeding pump, and her cuirass.
She will be receiving early intervention services for speech, occupational, and physical therapy. She will also require these services outpatient as well because our area does not have pediatric home health.
We are praying for private nursing also because she cannot be left at home with just anyone.
I have been off work since September 29th with her and I am unable to return to work until we have secured appropriate care for her. I would love to never leave her but we are and will continue to struggle without both incomes. This is a lot but we need everyone to understand that this is just the start of her journey and we don’t know what the rest of it will look like.
Please continue to pray for her and us. Please share her story!
We have been so thankful for all the donations and prayers. We ask that you continue to share her story even if you can not donate.
