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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Terminal

Yesterday Agnes took a turn for the worse. Her overall condition has been described to us as “critical stable.” And, “fragile.” And, “terminal.”

We have heard the words, “there is nothing more we can do except help her to be comfortable.”

Agnes is comfortable right now, and she is stable within her very fragile balance, but it is also clear that her body is failing.

After all this runaround about her shunt, it turned out not to be the deciding factor. Her ongoing trouble with pulmonary hypertension is what now her “terminal” condition.

In a nutshell what is happening is the pressure in the blood vessels going to her lungs is so high, that the right side of the heart has to work extra hard to move blood. The right side is enlarged, to the point where the left side is being compressed. Agnes’ heart isn’t able to keep up and so blood is backing up in her veins, unable to get to the heart to be re-oxygenated and sent through the arteries to her her body. Blood is backing up and with nowhere to go, fluid from her vascular system is seeping out into her tissues. The slowdown in circulation is affecting her organ functions. There is not enough blood flow to her liver, kidneys, and intestines. She is not absorbing nutrition from food, or her medicines. Her lungs are very stiff because of the inadequate blood flow so her ventilation needs a lot of support.

They could try to fix her shunt, but with organs in the process of failing what good would an operational shunt do for long term? The shunt is small potatoes. The biggest issue now is that the problems are affecting nearly every system in Agnes’ body.

She is dying.

There is always time for a miracle, and we haven’t given up hope for one. We are also talking with palliative care about Agnes’ end of life options and what we feel like we could or should do. We are always striving to make the best choices for Agnes. Right now she is behaving so we have some time to think and pray. There really is no telling how much longer Agnes will hang on. She is the boss lady. In any case it does not appear at this time that Agnes’ death is imminent–at least not in the next day or two. So that’s a relief.

Fr. Sal did allow her to receive Eucharist last night, in her own way. She got to lick the Body of Christ and I consumed the rest of it. I know she doesn’t need that sacrament because she is a baby and pure and sinless, but I wanted her to have it.

I do plan to write a beautiful post about what I’ve learned from Agnes, about the meaning of suffering and the power of prayer and all that stuff. When I feel like I can get through it! Hopefully I will be able to manage that soon.

Thank you all for your continued prayers.

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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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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: UPDATE

Agnes’ shunt surgery yesterday afternoon was successful. The surgeons were able to place a V-A shunt on Agnes’ left side without a problem. This morning they sent Agnes to do a head CT scan just to check up and everything looks like it is working.

Of course, the big unknown factor is Agnes’ pulmonary hypertension and whether the pressure in her heart will prevent the shunt from draining properly. This may take a while to develop fully, but things appear to be working at this time. My feeling was that if the shunt didn’t fail right away, we have a pretty good chance that it will continue to work. Agnes has been more awake today and she got mad a few times, and the shunt still appears to work, so I ¬†am encouraged.

In other good news, Agnes got back on her home ventilator today, her tube feeding is back to her normal rate and schedule, all her home medications are going without any problems, she is tolerating routine care like baths, diaper changes, and trach care. Her incision sites still look gross of course, but they are healing according to expectations. Her belly is soft again, though still a bit more distended than what her normal should be. No one is concerned because that distention she had was more than likely shunt-related, and now that issue is resolved. It will take a little time for her fluids to balance out again with all the recent changes in shunts and other drains.

To top off the surprising news, we were told today that Agnes will move out of the PICU and up to the regular floor for trach and vent dependent children. This is mostly because the PICU is full to capacity and they need Agnes’ room for an incoming, critically ill child, but it is all because Agnes continues to improve and the PICU isn’t doing anything for her that she can’t get on the regular floor.

And finally, word on the street is that Agnes will come home next week. Like, early next week. Like, if she continues to do well and the shunt appears functional, and all the home care gets organized, she could be home for the New Year. Whoa.

We were expecting Agnes to have a Nissen wrap surgery this admission, as well as an I.V. port installation, but those two things now seem to be optional at this point. The intensive care doctor is convinced that Agnes’ recent gastro- problems were a result of the extra fluid in her abdomen, and now she is tolerating food well, and everything seems to be normal in that area. So, a Nissen is not indicated. As for the I.V. port, that may be something for Agnes in the future, but it is not emergent and can definitely be scheduled if and when the need arises. Plus, the neurosurgeon wants Agnes to have a chance to totally recover and heal from the shunt surgery, so we’re looking at weeks at least if we decide she needs the other stuff sooner rather than later.

So.

Big news.

We are shocked still, and we can’t even feel excited or happy because this is so unexpected. I am convinced there was some miracle here. The story changed way too quickly to be entirely medical. Someone out there must be a really fervent pray-er. Or some saint intercessor is very powerful. I guess we’ll never know the agency of this miracle. God is good.

Thank you all for your prayers. Obviously they are working!

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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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Agnes’ New Record

Agnes came home from the hospital at 1:00pm Wednesday December 11. She was readmitted to the hospital at 6:30am Sunday December 15.

At around 2:00am Sunday morning, the night nurse knocked on my bedroom door saying that Agnes’ pulse-oximeter readings were low and she could not get them to come up, after trying for half an hour. So I went down and Agnes’ O2 sat was hanging in the mid-80’s. I tried a number of things with the nurse: repositioning, suction, more blankets, a different head pillow, flush the suction catheter and try suctioning again, rescue dose of Ativan, soothing touch, turn up the O2, make sure the machines are working by testing the pulse-ox probe on ourselves. At about 3:30am, I decided we should try changing Agnes’ trach tube, to eliminate that as a possibility. I woke up Jeremy to tell him what was going on and he came down too. We changed Agnes’ trach quickly, but she gagged and threw up a small amount. We suctioned out her mouth quickly but the damage was done. After that Agnes’ O2 sats were hanging in the 70’s. I tried snuggling while Jeremy called in to Palliative Care. The on-call nurse suggested giving puffs of Albuterol, which we did, and that didn’t help. Agnes looked peaceful–if the pulse-oximeter wasn’t there to tell us we wouldn’t have known there was a problem. the on-call palliative care nurse recommended we talk to pulmonology, which we did. That doctor recommended we go to the Emergency Department, which we did.

Upon arrival, Agnes continued to maintain sats in the 70’s. When the ER folks swarmed in and took her out of her car seat, she threw up again, a larger amount. At this point it was difficult to keep her in O2 above 75 percent even with aggressive bagging. We were lucky that the ER doc had treated Agnes before and knew about her likely problems. She called up to PICU to let them know Agnes was on campus, and they began preparing a room. Agnes endured a mere 40 to 60 minutes in the ER, getting an I.V. places, blood drawn for labs, and a quick X-Ray. It was very different compared to her previous visit.

We were taken up to the PICU soon after arriving, and the team worked aggressively to get her sedated, paralyzed, breathing on the hospital ventilator in 100 percent O2, totally supported. The X-Ray showed total white out on her left lung, and partial white out on her right lung. Doctors diagnosed chemical aspiration from when Agnes threw up bile upon arriving in ER. This was compounding the initial suspected pulmonary hypertensive crisis that started the whole ordeal at 2am. Because Agnes aspirated bile, she suffered septic shock. Her body shut down: low body temperature, low blood pressure, stopped peeing, no bowel sounds. On top of all this, her abdomen continued to swell with fluid. The PICU team is currently treating Agnes with meds to help her maintain normal blood pressure, improve heart function, dilate capillaries in her lungs to improve oxygenation. They are keeping her covered with a warm air cushion to help her maintain a normal body temperature. They are checking her blood work multiple times a day. She has a foley catheter. They inserted a drain to take off some of the fluid build up in her abdomen; that had drained off more than 500 ml by the time I left this evening. Agnes is still totally paralyzed and sedated, and completely dependent on all her treatments.

I have never seen her this sick. I am shocked at how quickly it came on. I feel responsible for her condition because it was my idea to change her trach at home, which caused her to gag and puke and aspirate a bit of bile. I am slightly reassured by the fact that the on-call docs we talked to would have made us change her trach anyway, but still, I feel in a way Agnes’ condition is my fault somehow. In my head I know we did everything they would have done had Agnes been in the hospital at the start of her ordeal, but emotionally I feel responsible. Perhaps this feeling will pass.

And finally, as icing on the cake, the neurosurgeon is serious about externalizing Agnes’ shunt this time. Because of the drain to take off some of the fluid in her abdomen. It could allow an infection to enter and taint her shunt. So the shunt must be externalized, CSF cultures sent, and reinternalized later. As a VA shunt to Agnes’ heart.

Shit.

So, long story short, Agnes is not yet stable. When she is stable, neurosurgery plans to fiddle with her shunt. The PICU team is also hoping to discuss a number of other procedures that Agnes may require. In other words, we’re probably looking at another three to four week hospitalization. Agnes won’t be home for Christmas.

But on the positive side, I guess Santa Claus flies in to Akron Children’s Hospital on Christmas Eve morning, on the Air Bear medical transport helicopter. That sounds exciting! Then he visits all the units. I know I’m not the only parent with a kid in the hospital over Christmas, but I sure feel disappointed.

I guess we need fervent prayers for Agnes’ recovery. There is so far she needs to come back this time. Agnes needs a miracle.

Mary, Blessed Virgin Mother of God, pray for us. Saint Agnes, pray for us. Saint Maria Goretti, pray for us.

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This Post Brought to You By Chocolate and Red Wine

So, this week has been a very busy week. We have made some major decisions regarding Agnes. I have had a major turn of heart.

On Sunday I wrote and I was at the bottom of my reserve. Hope seemed so pointless and the prospect of continued medical care for Agnes seemed overwhelming and also pointless.

On Monday a new intensive care doctor came on rotation at the PICU, and we had a long chat with him about Agnes history and possible long-term courses of action. He was very thorough and quite lucid in his summary of what’s going on with Agnes. I was convinced by his assessment, and I appreciated that he outlined all the possible routes we could pursue at this time.

One route that Jeremy and I could choose is the Medical Intervention Path. This course of action would see Agnes on a ventilator full time, at home, and receiving therapies and treatments to maximize her potential and prolong her life. With this route, we would continue to opt for diagnostic testing in the hopes of uncovering information about her condition, and come to a fuller understanding of what treatments would benefit. If Agnes becomes ill, we would choose any available treatment to help her be well. She may continue to be in and out of the hospital. We would continue along this route until we reach a point where it seems like we are doing things to Agnes that provide little benefit, cause pain for little reward, or otherwise seem to be “unnecessary” prolonging of her life.

The other route Jeremy and I could choose at this time is the Quality of Life Path. This course of action would see Agnes weaned off the ventilator, if possible. If that is not possible, that would be The End for her and we would make sure she is comfortable and happy. We would not opt for continued diagnostic testing, unless the tests are relatively painless and quick. Agnes would receive therapies and treatments to maximize her comfort and enjoyment of her environment, but not necessarily prolong her life, nor maximize her potential. If she hates something, we would not continue doing it, if discontinuing the activity is an option. If Agnes becomes ill, we would evaluate whether treatments would “unnecessarily” prolong her life, or if it is a minor illness she could make it through with relatively little discomfort.

On Monday, Jeremy and I opted for the Medical Intervention Path. Agnes clearly benefits from being on the ventilator. She has very little reserve to fight illness: if she gets what would be a minor illness for us, it could kill her. Really. The ventilator will hopefully give her a backup so that if she gets a cold or something, she can cope and maybe not die. Or maybe not wind up in the PICU. The hope is that Agnes will only need the ventilator for short term, through the winter “respiratory season,” as they say in the hospital. In the spring, she may be able to wean off the ventilator. So Jeremy and I will give it a whirl. We hear stories all the time of special needs kids who were previously ventilator-dependent suddenly being able to wean off the vent. It could happen that way for Agnes, too. But if we don’t try it, she is guaranteed to become gravely ill and possibly die.

So, as you can imagine, this was an enormous decision to make. But you know what? I feel good about it. On Monday when we were talking with the doctor, I felt clear-minded, and the course of action we should take was obvious to me. Of course Jeremy and I are nervous about bringing Agnes home on a ventilator, but we both know it is the right thing to do. I know my turn of heart was because of all the prayers you all sent up for me and my family. I can’t thank you enough.

That is not to say that now we all feel just relieved and thrilled and light-hearted, of course not. It is still a daily struggle to cope with stress and the overwhelming burden of caring for a gravely ill child. Hence the wine and chocolate I am currently enjoying. I do feel relieved that the decision is made, but coming to terms with the reality of it will take time. We have only just begun our caregiver training for the ventilator that Agnes will use at home. There is a lot to know. And Agnes is still more or less recovering from the surgical procedures she had earlier in the week, so we haven’t really seen how she is awake and alert while on the ventilator. What if she hates it? She has had a few episodes over the past couple days where she has become extremely agitated and upset, and morphine was the only thing that finally calmed her. We think it is because she is still in pain and ouchy from her surgeries, but what if it is because she hates the ventilator?

Even though the ventilator is meant to give her time and to support her breathing, it is not a guarantee of health. She may still end up back in the hospital, gravely ill. Or she may still have a pulmonary hypertensive episode that is so bad it leads to cardiac arrest. That is a possibility for her in her condition. There is too much going on with her for there to be any clear answers. I think I would be devastated if–in the end, for all the trouble we are going through with the ventilator–it doesn’t actually make a difference.

But, we’ll see. Agnes could be coming home during the first week of December if she tolerates the ventilator, and we get home care nurses organized, and we complete our training, and we make the necessary electrical modifications in our home. There is a lot to do to get ready for bringing home a kid on life support machines.

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What I Wore Sunday: November 17

Hi, I missed the link up last week because we spent 12 hours in the Emergency Department at Akron Children’s Hospital, but I’m happy to be back with Fine Linen and Purple.

100_1894This Sunday I briefly considered wearing the outfit I wore last Sunday, just so I could post it up on here, because it was a really nice outfit. But I decided not to. Instead, I went for my tried and true outfit that I often fall back on. Shirt and skirt both thrift store finds and well loved by me. Shoes Minnetonka Moccasins. Pink watch, Relic. Ring, Kay Jewelers substitute wedding ring when I had lost my real wedding band about a year ago. It finally turned up, but I still wear this “fake” one when my hands are fat and my real one doesn’t fit.

Anyway, I’m sure most of you come here to get Agnes updates, so here it is. I haven’t posted much this week because I’ve been in a really awful place in my head where I almost feel like it’s time to give up the fight and stop delaying the inevitable. I feel so ashamed to admit that, but I’ve written honestly on this blog before and I think it’s important for other parents of special needs, medically fragile, and gravely ill children to read real accounts of what it’s like.

So, Agnes nearly died on Monday from what they call a “pulmonary hypertensive episode” which pretty much means she freaks out so much she forgets to breathe, oxygen doesn’t get from her lungs into her blood, and her heart has no oxygenated blood to pump to her body. That got us thinking about Agnes’ End of Life and what that might look like, and what would we do, and how much treatment is too much, and what kinds of things would we want to go forward with and what would we want to refuse.

Agnes did recover from that episode on Monday, and no one is thinking that now is the time we need to discuss The End, but Jeremy and I wanted to get the conversation started so that when the time does come, we know what we want.

So anyway, I’m just looking at Agnes’ life she’s had so far, and I’m sure it’s going to be more of the same in and out of the hospital, a surgery here and there, long recovery times, always the danger of imminent death if her shunt fails, if her bowel gets twisted again, if she gets a cold, if she throws up and aspirates, on and on. And I thought, how much more of this is going to be worth it? I’m already exhausted emotionally and mentally and physically. I can tell Agnes is unhappy and uncomfortable being in the hospital yet again. What can we do for her that is actually going to make a real difference and help her to live comfortably and enjoy even a few enriching experiences?

I don’t really have a good resolution to this narrative yet, but I do feel a little bit better about it today than I did earlier this week. I feel a little bit more able to fight for Agnes and do what it takes to keep her alive. Really it’s a minute-to-minute struggle. I feel like a horrible parent for even thinking that maybe I don’t want to keep fighting for Agnes. Don’t I love her? Isn’t she my baby? Shouldn’t I love her and fight for her no matter what? That’s what all the other moms do for their special needs kids with complicated medical problems. All the other moms yell at hospital doctors who suggest it’s time for “nature to take its course.” All the other moms heroically bear the inconvenience of bringing home a kid on a ventilator, or giving tube feeds continuously. All the other moms have faith in their children to overcome even the steepest odds to live beyond expectation and achieve developmental goals all the medical professionals said would be unattainable.

So, that’s why I haven’t been posting this week.

Agnes is going back to surgery tomorrow afternoon to have her shunt revised and replaced. Then she just has to recover from surgery. The doctors have opened the discussion of sending Agnes home on a ventilator; Jeremy and I have to decide what we want by Wednesday probably. I’m not sure we really have a choice, though the doc says we do.

I can’t even write any more right now. Would you all please pray for me? And for my family and for Agnes. Thank you.

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