Monday, January 17, 2011

Okay. I'm going to vent a bit. I might be a big negative.
I haven't blogged in a few days because it seems every time I get it in my mind to do so, something happens that changes our game plan and I have to rethink everything I was going to say. With that in mind, this is where we are tonight.
We had another ER visit today with Lily. It was actually the 2nd time we rushed to PCMC this weekend. On Saturday she was having issues with her oxygen sats, we couldn't get her above 90, so we piled in the car and headed for the hospital. Once in the car she of course started satting at 100, so we headed for homecare instead (which miraculously is open on Saturday) and traded in our pulse oximeter for a new one, thinking the issue was all in our machine. We went up to Park City to do the annual ski weekend with my parents. Lily seemed fine the rest of Saturday, and Sunday. Then last night the same oxygen issues started up again. Turned her up, switched the probe, tried different locations, finally seemed to find a combination where she was doing okay, and went to bed. At around 1:30 it started again and we spent the rest of the night taking turns silencing the alarm. Honestly that's all we did. I really did think it was the pulse oximeter and we would deal with it in the morning. In the morning we did just that, decided it was her, and not the machine, loaded up the kids and came down the mountain. No skiing for us.
At the ER her sats were still at 85 on 1 liter O2, her regular being 0.5 L. We put her up to 2. No congestion. No fever. Moving air well. Chest x-ray actually looks BETTER. We decided she must be shunting blood strangely through her giant, messed up heart and we went home with the plan to call cardiology tomorrow and see if they want to do an echo. When we left she was on 1 L again, satting 99. Now she's on 2 liters again, satting low 90s.
The funny thing is she looks really good. She's active, awake, maybe a bit irritable but if it weren't for the dang monitor we would think she was doing better than ever.
So is this our new normal? Chasing her sats around, up to 2 liters, could even use more but our concentrator only goes that high?
We are tired and frustrated, and unsure what is right anymore. Why is Lily here? She doesn't have much quality of life. She sleeps even more than usual since we started her seizure meds. Her skin is forever breaking out and peeling since the amoxicillan rash. She is covered with bruises from the multiple IV attempts from our PICU stay. Now she is requiring a massive amount of oxygen. I mean, when does this end?
Our only "Hope" as been surgery to fix the multiple holes in her heart, which could potentially bring her oxygen needs way down and fix this latest shunting issue. But I'm certainly not thrilled about putting a tiny baby through open heart surgery when she has so many other issues on top of her heart. Zar and I feel like terrible parents when we look at each other and wonder aloud if she--well...would rather not be here. We keep waffling on the DNR issue; we discuss intubation and what that would accomplish, we change our minds minute to minute.
I guess I'm just looking for permission to completely fall apart for a second and say that this is just too hard. It is too hard with two other little girls. It is too hard when Lily doesn't seem to have much to live for. When it seems like most of her life is either spent sleeping or in pain. When she doesn't even seem to want to be held. When it just doesn't seem worth it, to anyone.
I believe in comfort care. I believe that death is not the worst thing, and focus should be on life, and the quality thereof, and not on just alleviating death. But of course it's different when it's your baby. When you are the one saying " nothing."
My biggest fear is not surgery. It is not even doing the surgery and having it not help. It's this; choosing comfort care only, and then not being able to comfort her. Watching her decline. How long that would take. Just waiting. Just because an option is available, doesn't mean it should be utilized. Unless, of course, it should.


Erin said...

I cannot even imagine having to make the decisions that you will have to make in the next few days. You are in our prayers.

Anonymous said...

Somehow, someway, you will be led in making these decisions --- or Lily will make them. We love you all.

xoxoCarolyn H.

Stephanie said...

I agree with Carolyn. We have been where you are. She will tell you, or you will just know. It's OK to vent - you would be crazy NOT to be feeling this way!!!

We are keeping you all in our prayers.

I just wanted to add something - for whatever reason, when Christopher was Lily's age we realized that oxygen via the concentrator just did NOT do it for him. We had to go to tanks. The only thing we could figure out was that a concentrator only concentrates to 92% O2 - the tanks are 99%. The also seemed to have a little more pressure than the concentrator. We were able to get his O2 requirements down by half.

I also wonder if they have been able to test her for tracheal malasia? If her trachea is collapsing (Christopher's does as well) that may be one of your issues.

What ever happens, you will all be in our prayers.


Steph and Christopher

ANewKindOfPerfect said...

I can't even begin to put myself in your shoes. Just know that your family is in the prayers of many, especially that sweet little Lily. ((hugs))

Penny @ said...

i can't begin to imagine what you're going through. i'm praying for you all, for your precious lily...

Cristina said...


It sucks to be living the question on a philosophy exam, and sucks even more to be poor Lily. Nothing will be easy, if you make the choice or even if Lily makes it for you.

You are a GOOD person, Erin, and an amazing mom--even if doing the right thing for your child makes you feel anything but amazing. Trust yourself.

Sending love and strength your way.

Alisa said...

Hi Erin,

i wrote you an email- one I got off of facebook. Read it when you have a sec.


Susan said...

We love you. Find a new thought to replace the "bad parent" fear!
"I am deeply loved."
"Please help me, God."
"I am willing to do whatever is necessary, if I just knew what it was. Please show me the way."

Allison said...

SOOOOO hard. You will know what is right for Lily and she knows how much you love her. You will be watched over, loved, and supported whatever path you take. xoxo