Last Week in Review

“Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.  And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus” Philippians 4:6-7

 

Looking back at last week, we are so thankful that our little heart warrior had an uneventful week (but in good ol’ Veya fashion…. she had to make up for it once the weekend came around)

On Sunday the team had to stop her dialysis cycles because she was no longer draining well.  (They inject a solution in her abdomen through her pd catheter which is supposed to dwell for 30 minutes and then drain but this was not happening, so she had some fluid retention again) The nephrology (kidney) team came by Monday afternoon and did some trouble shooting and so far, their efforts look like it has helped, and they have started up her cycles once again.  As I’m writing here, the cycles continue to go well for Veya.  The plan was to possibly scale back on her cycles, but the team doesn’t feel like she’s ready for that yet. While this may feel discouraging the good news is, it will just give more time for new cell growth and hopefully bring the desired healing.

Aside from her kidneys here, Veya was also diagnosed with Moderate Pulmonary Hypertension. This is a condition that affects the blood vessels in her lungs.  It develops when the blood pressure in her lungs is higher than normal.  This is being caused by her AVSD because her heart is having to work so hard and is something that may or may not go away for her and might have to be managed for the rest of her life.  (even after her heart repairs)

And just when we thought there was no possible way to accommodate yet another piece of medical equipment to her tiny living quarters…. she says, “watch me”. Veya now receives nitric oxide through her breathing tube which dilates the blood vessels in her lungs, managing the pressures in her lungs and so far, it has been working well for her. 

You may recall from one of my previous posts, that Veya had her feeds cut out earlier this month.  They have since reintroduced feeds to her, and she has been tolerating this well.  By this evening she will be back to her full feed amount.

Later in the week we will meet back together again with Veya’ medical team.  They will discuss with us their next steps in caring for her and what the overall picture looks like for her from their perspective.  Full transparency here; it has us feeling a little nervous (probably because our last meeting with them was very heavy and difficult news was shared) The team right now is struggling with figuring out how to move forward with Veya and where to begin their attempts with weening her from certain supportive measures that are currently in place.  They need to do so very cautiously as to not have her slip back to where she was earlier this month with her health.  Please pray that their next steps for care may be blessed and that God may strengthen Veya so that she can be weened from her supportive measures overtime and do a bit more on her own.  We also ask for your prayers over Veya’s Pulmonary Hypertension diagnosis, that if it is God’s Will, it may resolve on it’s own.