Last night was another difficult one for Ella. She was awake from 2 am on with a fever.
The monitors we use to ensure Gabriella’s safety seem at times to be a mixed blessing. While they enable us to know her precise heart rate, oxygen saturation level, and respiration rate, which is helpful to us – it is unsettling to watch her heart race and oxygen levels fall as she fights against the fever.
Since her fever has not “spiked” above 102F we are fairly confident her fever is not due to a bacterial infection (which would mean a trip to the hospital). We continue to watch her very closely and try to keep her as comfortable as possible.
Pictured left are the two monitors we use to track Ella’s vital signs.
Thank you for your prayers.
Saturday, 05 Feb 2005 (8 pm):
While at home, Gabriella normally wears two different types of monitors. The monitors alert Mum and Dad if Ella’s heart rate, respiration rate, or oxygen saturation level stray outside of fairly narrow windows.
Additionally, she is required to breathe warm humidified air in order to keep her airway and lungs moist. Ella endures the discomfort of wearing her equipment with the patience of Job. So as you can imagine, bath-time is a very special treat for both Ella and Mum.
Wednesday, 01 September: Here are two photos of Gabriella sleeping (the red aloha mittens are to keep her from pulling out her feeding tube). We believe she prefers this position because it makes it easier for her breathe.
Each day her heart must work a little bit harder as it becomes less efficient in pumping blood out to the rest of her body. As you can imagine, we monitor her closely; looking for any indications she may be experiencing additional stress.
Typically, high stress incidents begin with coughing spells, which usually last 3 to 4 four minutes. After such an incident, Gabriella’s respiration rate remains high for several minutes – until she restores the oxygen saturation (O2%) levels in her blood. Gabriella’s resting O2% level is usually in the high 80’s; which is similar to O2% levels of newborns in Leadville, Colorado (Altitude: 10,000 feet).
During high stress incidents, Gabriella’s O2% levels drop into the 70’s and her heart must work very hard (180+ bpm) to restore her resting O2% level. Each coughing incident is somewhat disturbing as we know from experience (see 24 August below) that any high-stress incident has the potential to quickly become serious.
Gabriella usually has 6 to 10 such coughing incidents each day. Ironically, we are not allowed to give her supplemental oxygen as it tends to worsen her condition – Go figure? Please keep Gabriella in your thoughts and prayers each day and know that we are praying for you and your family also. Have a great day.
