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Wednesday, June 22, 2011

Extended Vacation

The overall idea was that we were going home today. Any of you used to ICU life, you know we don't ever mention a specific day, we don't pack our stuff and we don't make plans around a specific date. Turns out, we are NOT in headed home... Because Gabriellas body is as stubborn as her mind! Her magnesium levels continue to be low, regardless of how much IV or oral replacement we give her. Today, to top it off, her immunosuppression (tacrolimus) levels are HALF of what they should be. This is a big issue because if her levels aren't right she could face rejection again, especially so fresh off of a major rejection episode! So we are staying here to get it all figured out. We have spread out her medications to 6 administration times throughout the day and night (27 actual drug administrations) to prevent interaction or absorption effects and see if we can get her levels on track. She had an ECHO today that I'm still waiting on specifics from. I'm not going to say tomorrow, or Friday, but I will say I hope its before Sunday so I can spend a day with my family all together!!!

We were supposed to be in Loma Linda right now for genetics, biopsy & kidney function testing. Seeing as how its 113 in Phoenix, if we can't be in California, I'll find the positive in being here that we are not outside!

We are now a few rooms down from some transplant friends. Please pray for little L, who is almost 1year post transplant and having lung & intestinal issues! I love seeing our friends, just wish it wasn't in the CVICU. :)

I'm so thankful for this gorgeous new hospital. It truly is comfortable in an odd way. We don't feel cooped up at all and are thankful for the amazing nurses we have had. It has all made a difficult issue tolerable and we will stay willingly until she is safe to leave!


Danielle said...

I understand this completely. We have a ton of decorations up in Lily's PICU room, so many that they haven't even been moving her rooms, and they aren't coming down until we either switch units (where I'll put everything back up) or are putting her into a car seat

Hope G's body learns to cooperate.

Megan@SortaCrunchy said...

Oh, bummer! Praying right now that those levels climb right back up to where they should be. What a blessing to be in a place where you are so well taken care of. And yes - Praise GOD for air conditioning! said...

I pray daily that your little angel responds just how the Lord wants. Be confident knowing He is holding you all gently in His hands.