Tuesday, March 22, 2016

New Perspectives

Over the weekend Avelyn had a few new complications arise. We learned she has a peri-renal bleed, which was likely caused by the heart cath wires puncturing her inferior vena cava a few weeks back. When her heparin got to supra therapeutic levels this bleed got worse and made itself evident. Right now it hasn't damaged the kidney further but it'll continue to be monitored. Her heparin was stopped for a couple days and her GI bleed cleared and this peri-renal bleed seems to have slowed if not completely stopped. 
She also was detoxing off diluadid all weekend and underwent medication changes to help her right ventricle rest while also favoring kidney perfusion. Last night the detox caught up with her and threw her back into delirium, although not as bad as a few weeks ago. She restless and jittery all night. She couldn't get to sleep until around 6am. She's resting well now after getting risperadol, which she was able to have because her feeds have been restarted as of yesterday.
So far her kidneys haven't improved much, if at all. Her urine output has picked up a minuscule amount but her labs are a little worse than this time last week. The nephrologists still seem to be encouraged that she is producing urine at all. So we continue to hope for full renal recovery, but it'll take time.
Her left lung collapsed over the weekend again. Today it's back up but still atelectic. She is getting respiratory treatments to further improve the function. She came off the Nitric Oxide again last night. So far her Sats are in the low 90's most of the time, on 60% O2 but this will get better as she acclimates. 
Her labs that monitor infection have been jumping even though she's on a ton of antibiotics and an anti-fungal. They cultured everything yesterday and so far there hasn't been any growth but it's still really early. Hopefully it's due to something very treatable or just stress of detoxing. It's all such a Rollercoaster of ups and downs. 
Her echocardiogram showed a bit of improvement on her left side. She is now showing normal functioning of that side. Last week it was depressed, so that's good news. Her right side isn't yet showing any significant signs of improvement, nor is her tricuspid valve regurgitation. However the cardiologists believe with time her right sided function should improve. She'll never have the pulmonary or cardiac function of a normal healthy kiddo but she should improve to the point of being able to live a relatively uninhibited lifestyle, or that's the hope anyway. She will still need multiple open heart surgeries as she grows to replace her conduit and pulmonary valve. Since it is artificial tissue it won't grow with her. She'll also need a couple heart cath's a year to stretch her pulmonary arteries to optimal size. They likely will have trouble growing too due to all the surgical interventions they have needed. 
She is still pouring out her chest tube, some days it's still close to a liter a day. She can't really start to make significant improvement until that slows. Her kidneys likely can't recover fully until that slows. That may be a month or longer. She's been dealing with this for 6 weeks now. Everyday they have to replace all the intravascular contents she loses- protiens, electrolytes, blood products, ect. This complication is what is keeping her in such a fragile tenuous state. 
Despite all of this she is a little better than she was this time last week. I have decided we have to start considering the weekly outlook rather than the daily. She is doing her damnedest to get better and make it home to Appalachia. She has a lot to see and do. Hopefully by sometime late spring or early summer she'll get to see what outside these walls. For now we're taking it a day at a time and counting our blessings. Our wonder girl fights on and we couldn't be more proud or grateful. 
Love to you all. Thank you for each positive thought, prayer and every bit of support sent our way. We are forever grateful. 


  1. Thank you for the updates. You all are in my thoughts and prayers and I check in on y'all often. Any improvements, no matter how small, is wonderful news. Hang in there.

  2. Thank you for the updates. You all are in my thoughts and prayers and I check in on y'all often. Any improvements, no matter how small, is wonderful news. Hang in there.

  3. Sorry to bug you so much about her condition honey. I really don't mean to drive you Bonkers. I just love her so much and worry constantly. I'll try to give you a break 😳 It was really refreshing to get to see her so much this past wkend and look into those beautiful blue eyes 😅 Seems like it's been forever since I've seen her awake. I'm praying you both get more SLEEP today/tonight. Let me know if there's anything specific you need or want for me to bring to you. I love you Somer Girl...Momma