She is still in renal failure. Dialysis has been stopped but could be restarted at anytime. Her urine was picking up over the last couple days, although still only about a tenth of what we would hope for her- if that. Now it's all but halted. Her chest tube output was also improving for two days but today's looks like it'll be higher than ever. She is also
showing signs of heart failure again. She got an echo yesterday that showed decreased function of both ventricles and increased tricuspid regurgitation. The reversal of these findings is dependent on her kidneys, lungs and chest tube outputs improving. She isn't maintaining her oxygen saturations well either. The other morning she dipped into the 50%'s and had to be be bagged up with 100% fiO2. For a while her saturations didn't budge, even with the 100% oxygen and increased pressure. Her left lung is down and consolidated. She isn't diureasing the fluid that has third spaced into her chest wall interstitial spaces. This makes it harder for her to ventilate and harder for her right sided heart to pump. She was put back on nitric oxide and epinephrine after her desaturation episode and echo showing decrease cardiac function. These seem to be helping her ventilate better.
She now has an active GI bleed in her stomach and tracheal infection to top things off. The echo and ultrasounds also show that the clot in her subclavian vein has broken up but that she has a new one in her inferior vena cava attached to her PICC line. We were hoping she could come off the heparin but that doesn't look possible with this new clot. The PICU doc's don't seem too concerned with the bleeding but I think they are just trying to be reassuring. They say it could be worse, and yea I know that. But she is a super fragile cardiac baby with a host of problems already. She can't handle allowing this bleed to go unchecked. I requested a GI consult. We'll see where that goes. For now the nurses are pulling about 10 ml of blood off her stomach every 1-2 hours. No amount of reassurance could convince me that this is inconsequential in a baby her size.
I am so incredibly disappointed about her chest tube output shooting up today. We have been hoping and praying for a turn around and just aren't seeing that. If she wasn't pouring out of her chest tubes she would have the intravascular fluid volumes needed to produce urine and the protiens needed for healing properly. Right now she can't even go to the cath lab to balloon up her tiny left pulmonary artery (which would likely help decrease the chest tube output) because of her kidney failure. The dye needed to preform the procedure is quite hard on the kidneys. She wouldn't be able to handle it. So we wait and we watch our baby decline, or that's what it seems like is happening. Sure, she is showing improvement in some areas but not enough to quantify.
We are surrounded by truly sick children, ours included.
Avelyn's eyes are sunken and often dulled by pain and or the medications needed to lessen pain. I wouldn't doubt we also exhibit the same hollow eyes. I've seen the look on so many other parents around us. If only our children could be healthy as all babies deserve to be. If only we could hold them, soothe them and see them smile. Hell at this point I'd be happy for a wet diaper. Seeing my child struggle and get no where is so disheartening. I read posts by parents complaining of feeling helpless. You don't know helpless. You may think you do, but you don't. Hug your child. Rock your child. Look into their eyes and know they recognize you and are aware of your presence. Please do these things and feel grateful for each. The day I can do any of them will be truly glorious. It's the day I pray for every day and am so often reminded that I am not guaranteed.
While speaking to another heart mom, whose baby was not doing well after her heart transplant, she described looking at her baby's car seat the other day. I knew exactly where she was going before she said it. I've done it to. I've stared longingly at that stupid seat and cried. Why? Because we may never get to use it. That's helplessness. Looking at your baby on ecmo and not being able to find a place to kiss that isn't covered with a dressing, tube, wire, incision or bruising is helplessness. Not recognizing your own child due to the edema is helplessness. Sitting day in and day out at your child's bedside reading out loud because you can't stand where your thoughts wonder is helplessness. Carrying around and crying into a pair of booties during 16-18 hour long open heart surgeries because that's all you could grab before she was wheeled out of the room is helplessness. Waiting for a phone call to know if your child is alive or not, that's helplessness. So please, for the sake of those who know what being helpless feels like--rejoice in good health where it exists-- to some it is but a dream we chase but may never catch.
The photos below show Avelyn in delirium, extremely dehydrated and the last is her on ecmo. I never shared it before because it is so painful to look at. It still sickens me to think of her like that. Today marks a month ago that she was on ecmo. This is what my child has endured. This is what she has endured and continues to fight against. I am helpless to save her from her pain and struggle. Truly helpless.