Good afternoon everyone!
We have some prayer requests that we would like to focus on over the next few days. First, that Grey would be able to tolerate her feeds and, second, that her IV lines would remain intact.
During the night we received a call from our doctor stating that Grey was not tolerating feeds again. They restarted feeding yesterday and within hours her belly filled up with a lot of air. This could be caused by a number of issues; weak digestion, food intolerance, infection, but most likely the gas is a result of her ventilator forcing air into her stomach. They have stopped the feeds and put a tube (repogle) down to suction out the air. There is a delicate balance between her nutrition and respiratory support. Clearly she needs to breathe, but she also needs adequate feeding in order to grow and develop her lungs and other vital organs. Next steps for the doctors are tough and not completely clear yet. As of now, the plan is to push her feeding tube further down to the lower area of her digestive track while keeping the repogle in her stomach to suction gas build up. A last step would be to re-intubate her, which would direct air straight to her lungs and reduce flow to her belly. We want to avoid this if at all possible as this is invasive, uncomfortable, and harsh on her lungs.
The other issue she is having is with her IV access. She has been poked so many times that her little body is running out of places to stick an IV. Her veins do regenerate but they are so small and fragile that they do not last long with an IV catheter inserted before they break down. These IVs are critical for background nutrition support, antibiotics, and blood transfusions. She currently has two in place. Hopefully they stay intact for a few days. If theses fail and nurses are unable to get any new IVs, Grey might need to be transferred to the hospital downtown for surgical placement of a central IV line. We want to avoid this as well. She has had some swelling in her leg and arm from her last two PICC lines, hopefully this is mechanical irritation and not infection. They took some blood cultures this morning to rule out possible infection in her IV and stomach. Results will come in 48 hours and they are proactively providing her with antibiotics. She is also retaining some fluid and receiving lasiks to pull it off her lungs and getting a blood transfusion per her morning labs.
To quote the doctor, “she isn’t being her feisty self,” and she has been more fussy than usual today. She is clearly in some discomfort. She is a fighter and we have witnessed her overcome so many challenges already! Hang in there Grey this too shall pass!
Thank you all for your prayers!