Laughing, Weeping, Living

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

9 Lives?

So…Agnes is not dying anymore? Maybe? At least not soon? Maybe?

Agnes is very slowly crawling back from the edge of death. The doctors have been able to turn off a couple of the medicines, and reduce some of the ventilator support, and take off a lot of the fluid that had built up in Agnes’ body.

It seems as if Agnes is enjoying another of her many lives. Make no mistake: Agnes is still very very sick and it is entirely possible if not probable that she will not make it home this time. But, there is a hope that she will recover. There is a small chance now that she will become well enough to live at home again.

Since she seems to be on the mend, Jeremy and I have to start making decisions about her care again. We can’t ignore the shunt anymore. We already know it isn’t functioning, so we have decided to try again with the plan we developed before Agnes decided to have a near-death experience. The neurosurgeon will get a CT scan tomorrow morning and depending on what that shows, and depending on Agnes, she may go to surgery for a shunt revision Thursday or Friday. The neurosurgeon will lengthen the catheter in Agnes’ heart so hopefully it won’t pop out again. If it does, we will know without a doubt that a VA shunt is no good, and we will have to make some serious decisions. But, at least we will know for sure, having given the VA shunt every opportunity to work.

It is strange territory, where we are. On the one hand, we know Agnes has an underlying condition that is terminal. On the other hand, she does not appear to be more ill than she has at times in the past. What should we choose to do? Should we aggressively treat her, knowing that anything we do is merely a band aid? Should we leave her alone and keep her comfortable while her body fails at an unknown pace? This is really hard.

We still have a lot to decide, and the goal line is definitely shifting every day. That is really hard, too. For the present, we will address the urgent issues like her shunt and her respiratory status, and see what she does.

I know I’ve said it before, and I’ll say it again right now: MIRACLE. Agnes was more or less dead and now she is not. We have been given an opportunity that we don’t want to waste. It is clear that Agnes has more work to do on this earth. I can’t even believe the number of people who are praying for her and for our family. It must be thousands with friends and family, and friends of friends of friends… and all over the world, too. It is amazing that such a tiny, sick baby can inspire so many to seek God through prayer. Agnes is truly helping to save souls. Her suffering is bringing graces to thousands of people. That is a miracle, too. There are so many hearts united in her cause. How can we not believe in the power of prayer, with what we have seen in Agnes’ life?

Slowly recovering from near-death.

Slowly recovering from near-death.

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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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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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Back For More

Today we had a big Family Meeting that included Jeremy and me, many people from the Palliative Care team, the attending PICU doctor and a PICU Nurse Practitioner, and the neurosurgeon and his Physicians Assistant. It was a full conference room.

We talked about a few major items.

Smiling in her sleep.

Smiling in her sleep.

1. Agnes’ shunt. This is the determining factor for her, going forward. It will be what limits her progress and dictates what further steps need to be taken. Tomorrow (Tuesday) at 12:00 noon, the neurosurgeon will replace Agnes’ current shunt with a V-A shunt, which will drain Cerebral Spinal Fluid directly into the right atrium of her heart. This type of shunt is already not a super good choice, and in Agnes’ case it could fail right from the get-go, because Agnes has increased pressure in the right side of her heart due to pulmonary hypertension. The pressure difference may not be great enough to allow the shunt to drain properly. If this turns out to be the case, we could know within a few hours to a day that the shunt will not work. If the pressures are kind of borderline, it might take a longer period to know whether the shunt will work or not. Or the shunt may work indefinitely. The neurosurgeon could not make a prediction. My personal feeling is, if the shunt does not immediately prove to fail, I think it has a pretty good chance of working out long term. That is not based on any medical facts, just my own gut feeling.

2. What happens if the V-A shunt does fail. There are two more obvious solutions for shunt placement. When I say “obvious,” I mean for a neurosurgeon. No one else has heard of them and there are a list of reasons why. The first alternate option is to drain the shunt to the gallbladder. The final option is to put the shunt in a major vein in the head. The gallbladder option may work for Agnes if needed, but it has some of the same concerns as the V-A shunt, infection risk and inability to place extra catheter. The brain vein option is not really available because as Agnes’ neurosurgeon put it, if the shunt doesn’t work in a major vein in her chest, what makes us think it will work in a major vein in her head? If those shunt options are exhausted, there is really no where else to go and we would be at the end of the line.

Her smiles are so sweet!

Her smiles are so sweet!

3. How close are we to the end of the line. As I said before, it really is dependent on the shunt. Agnes does not have any terminal condition at this point. Her respiratory failure and pulmonary hypertension are being managed with significant yet not extreme measures. There is no reason to think at this point that her conditions–apart from the shunt–cannot continue to be managed. There are a few other interventions that are possibly in Agnes’ future, such as a Fundoplication (Nissen) wrap to prevent reflux and a permanent I.V. port to facilitate access for medicine and blood draws. Those options will be open for discussion once Agnes has a chance to recover from the V-A shunt surgery. In the meantime, Jeremy and I have made it clear to all the doctors that all available methods are to be used in preserving Agnes’ life. We can revisit the question later if we start to feel like things are being done to Agnes rather than for her.

The meeting was good to have, even if no new information was uncovered, just to get all the teams on the same page. And now they all know they are supposed to do anything if Agnes has a crisis. I feel good leaving things at that point for now.

For a prayer request, could you please pray that the V-A shunt works? That seems to be the cutoff between not-extreme and extreme care. Mary, Mother of God, pray for us. Saint Agnes, pray for us. Saint Maria Goretti, pray for us.

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