Around 4:15 this afternoon, Courtney's room was cleared in order to start the process of removing her from ECMO and securing a Vas Cath (Vascular Catheter) in it's place. Around 7:00 PM, we got a call from the doctor informing us that she had been successfully taken off of the ECMO machine and a Vas Cath was in place. The Vas Cath is tubing that will allow her to be on continuous dialysis and will allow the apheresis machine to piggyback on it as needed.
We got to see her around 7:45 and she looks good (relatively speaking). She has gotten her color back although she still has some discoloration in legs and some swelling in her upper body and hands. However, the swelling in her face has gone down significantly and she looks more like herself than she has in the last week. YEAH!!!!!
On the other hand, nobody can teach us about perspective the way that Courtney can.
Just one week ago, we thought Courtney was just sick due to the fever she was running. On Saturday, after taking her to the ER, we were scared because Courtney was in so much pain and became so sick. By early Sunday morning, we were distraught because Courtney's body was in severe septic shock. In addition to being back on a ventilator and sedated heavily, we were told she needed to go onto a continuous dialysis machine because she was essentially in complete kidney failure. We were devastated with that news, but within an hour later, we learned that she would have to go straight to the ECMO machine. In all our previous experiences in the PICU, we had never seen a severely septic child survive ECMO (although we had only seen a handful of kids on ECMO over several years).
The outlook was extremely grim. Her sepsis continued to escalate until the blood infection was known and targeted. The aggressive treatment for the sepsis has caused a host of new issues. In all honesty, between the rashes, skin discoloration, and extreme swelling, there were a few times when she was unrecognizable as Courtney.
She still has an extremely long way to go to regain the quality of life she had a week ago. Her kidneys are still in complete failure; her heart and valve are damaged and it will be extremely risky when the time comes to deal with replacing the valve; she will have to deal with aggressive treatments against the bacteria for quite a while; her lungs will have to be strong enough to come off the ventilator, her swelling will have to remain under control; she will have to get her temperature and blood pressure under control, and her body will have to overcome a host of other issues.
And even with all that....in perspective....we may actually get a few hours of rest tonight because we are no longer devastated that she is so sick she has to go on continuous dialysis. In fact, we are grateful that she is well enough to come off of ECMO and go onto dialysis. HMMMMM!!
Throughout Courtney's life, God has always had a way of putting things into perspective...
Please continue to pray for Courtney's healing and to help us keep things in the right perspective . I pray that we will always look to our Heavenly Father for comfort, strength, patience, understanding, guidance, support, and thank Him for His mercies that He has bestowed upon us.
Thank you
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