Laughing, Weeping, Living

Life happens. You laugh about it or cry about it, sometimes both.

Stupid Shunt

Agnes was home for one week then on Monday morning early she was up to her old tricks. The overnight nurse did something like change a diaper or reposition Agnes, and she got mad. Her O2 saturations dropped and they wouldn’t come back up. We tried a bunch of stuff. She puked. We called in and they told us to go to the Emergency Department. We arrived and prompted a flurry of exciting, critically urgent care. They rescued Agnes with aggressive treatment. Agnes was admitted to the PICU. X-Ray and CT films were taken, cultures sent away to check for infections, heavy-duty hospital ventilator was fired up and Agnes got snuggled in for a inpatient stay.

We were hoping all her outpatient follow ups we had scheduled for this week would have satisfied her longing for hospital life, but she missed her favorite PICU staff. She must have heard that her favorite intensive care doctor was attending on Monday morning or something.

Anyway, to make a long story short it ended up being a shunt malfunction at the root of her distress this time. Plus a bit of an upper respiratory infection (read: a “cold”) thrown in for fun because why go halvsies when you can go all the way?

The neurosurgeon repaired Agnes’ shunt yesterday by replacing the valve and flushing out the two sides of the shunt tubing, but today it appears the problem is not solved. The brand new valve works great! The shunt is still not draining out her brain juices, though. So the neurosurgeons have three more things to try:

1. flush the distal side of the shunt tubing (the end that goes to Agnes’ heart) with an anti-blood clotting solution to break up any clots, if there are any. It is possible there is a small clot in the catheter that is preventing flow. They will try this tomorrow (Thursday) morning.

2. go to surgery to reposition the distal side of the shunt tubing deeper in Agnes’ heart so that the high pressures in her heart can not push the tubing out of place. They will try this Friday.

3. if those two solutions fail to produce a working shunt, the last thing to try is placing the shunt to Agnes’ gall bladder. This is very uncommon and has an iffy rate of success in even the more favorable patients. The neurosurgeon said he hasn’t done one of these in years. Also the risk of infection is much higher because…gall bladder. They will try this if/when the VA shunt proves a failure.

And that’s the end of the line. If Agnes burns through that short list of options we are done. There is nothing left to try on the cure-focused path and we switch by necessity to the path where we keep her comfy and manage her symptoms until she dies. We did start the conversation about hospice options today, just to start gathering information.

Jeremy and I are both very sad. Given Agnes’ history with her shunts, there is only a slim chance any of the final three options will work. There is still opportunity for a miracle, but I’m not counting on it.

Of course we remain grateful for your prayers. We are counting on them at this point. We don’t necessarily want prayers for healing; that is not realistic. Prayers for strength and discernment of God’s will would be lovely. Prayers for the doctors and medical staff who will be talking with us in the coming days and weeks. Prayers that we will always choose the course of action that will be best for Agnes. Prayers that we will feel peace about the decisions we make. Prayers that we will know it if the time comes when we must let go of Agnes’ earthly life.

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Christmas Surprise

On Christmas Day, we were in the midst of Agnes’ shunt saga and coming home was not even on our radar. We went to church and had a nice family dinner, we visited Agnes in the hospital and wondered how her shunt surgery would go on the day after Christmas. We snapped a few photos:

Merry Christmas from Agnes in her cute booties.

Merry Christmas from Agnes in her cute booties.

After Divine Liturgy on Christmas morning.

After Divine Liturgy on Christmas morning.

Agnes did do well with her shunt surgery. So well, in fact, that she was transferred out of the PICU on Saturday, while the rest of us were in Perrysburg, OH for a holiday gathering of extended family. I got a picture with my grandma:

Four generations: my grandma, my dad, me, Stephen.

Four generations: my grandma, my dad, me, Stephen.

When we came back to Akron and visited Agnes on Sunday, several people asked us if we were still planning to take her home that day, as in Sunday. Um…no that’s not really possible. We thought maybe by Tuesday all the home care stuff would be organized; that’s what we were expecting.

On Monday morning, I went with Stephen to visit Agnes while Jeremy took care of some car business at the BMV. As soon as I arrived at the hospital, before I saw anyone or spoke to Agnes’ nurse, I got a call from home with the message that the home care agency would be out at our house to reopen Agnes’ case since she was scheduled to come home that day, as in Monday. Well, that was news to me. So I called Jeremy and told him to bring all of Agnes’ travel gear when he was done at the BMV.

It was a whirlwind, but we still managed to keep the tradition of discharge-day photos:

snapped a selfie

snapped a selfie

daddy wanted to do a selfie, too

daddy wanted to do a selfie, too

We brought Agnes home in her Christmas present minivan, and she did a great job. No crying, perfect O2 sats, no puking. She has been very stable since coming home. She has been able to sat 100% almost all the time on a mere 1 liter of oxygen, which is something she was never able to do. Not since the week or two immediately after coming home with a trach only.

I can’t even believe she came home after only two weeks in the hospital. I am still amazed by what seems to be a miraculous recovery. It is hard to believe that only two weeks ago, she was so sick we were talking about what to do if it was The End, and the social workers were whispering “hospice care” to each other. And now, she seems to be healthier than ever, at least from a respiratory standpoint. She still has a bit of mysterious distention in her belly, which can’t possibly be shunt-related anymore since the shunt is now in her heart. If it’s not brain fluid, then what is it?

On the one hand, I am thrilled to have Agnes home and I want to relax and settle in to a routine at home, and feel like a “normal” family, as much as we can. But on the other hand, I keep expecting Agnes to pull a fast one in two or three days, “I told you so!” and end up back in the hospital.

Only she knows the truth.

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Agnes’ Tricky Shunt Surgery

So on Tuesday, the neurosurgeon and the general surgeon went into Agnes’ surgery together to place a V-A shunt through her right side jugular vein. When then assessed the location with ultrasound, they were not pleased with what they found. The jugular vein is more or less destroyed on that side because of the heavy-duty I.V. Agnes had while inpatient at the NICU, so the surgeons were not able to thread the shunt through on Tuesday. There was another possibility on the right side of Agnes’ body, another large vein that would be a less direct path for the shunt, but still acceptable. So they assessed that location, and they were unable to thread the shunt in that vein as well, for whatever reason. Agnes has always been a difficult gal to stick I.V.’s or draw blood, and I’m sure this was the same kind of problem. With one thing and the other, it took them 2 hours to get to this point in a surgery that should have taken just over one hour.

So the surgeons decided to give up and leave Agnes’ shunt externalized. They did look at the veins on the left side of her body while she was sedated in the OR, just to preview other possibilities, and they thought there were a couple promising sites, but they didn’t want to go for in on Tuesday. Agnes was in surgery for an excessive length of time, with a whole parade of surgeons and other assorted characters in and out of her operating room. Her neurosurgeon didn’t want to take the risk and install a brand-new left side shunt only to have it become infected due to the semi-chaotic circumstances of her surgery. They are so careful to do everything sterile, but mistakes can happen, especially when there is so much going on around you. So, they will put the new left side shunt in tomorrow (Thursday) at 12:00pm noon.

Obviously we wish the Tuesday surgery had been successful, but at least they did not give up on the V-A shunt idea. And at least they didn’t put the shunt in a less than favorable location only to have it fail right away. That’s looking on the bright side. Tomorrow they will start fresh, with their goal in sight, and hopefully the surgery will be quick and they can do what they need to do without any more funny business.

12:00 noon Thursday. Agnes’ shunt surgery. Praypraypray that it works out!

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