God Things

Have you ever heard the expression, “It’s a God thing,” or, “It must have been a God thing.” I haven’t heard it too often, but I’m pretty sure the expression is meant to describe a coincidence or apparent accident that obviously had spiritual influence. Like, maybe you are a young lady thinking that you might want to become a nun, but you don’t know where to start looking. Then the next day, you meet a nun through a mutual friend. That’s a God thing.

I think “God things” happen all the time, but we sometimes are too busy or blinded by our petty needs to notice. Or, maybe we don’t recognize a spiritually influenced event in our lives as positive.

I was remembering that post I wrote almost exactly one year ago about how much of an awful year we had from 2012 to 2013, and I was thinking that our life right now looks a lot like it did then. I admit, I have been feeling a little sorry for myself. It is true that no one is trying to kill us because we are Christian, we are not being forced to leave our home secretly in the middle of the night, and our neighborhood streets are not a battle ground. But, we did have a major car repair, AND a bill from the funeral home that we may not be able to pay until I sell my guitar and some jewelry, AND a refrigerator that seems to be thinking about kicking the bucket. We did lose our infant six months ago, AND we just had a miscarriage AND I have a mole that resembles, in appearance and description, a malignant melanoma, AND the dermatologists who accept my insurance are scheduling new patients into January. That all seems like a lot to bear, but at least no one is trying to kill us, right? Look on the bright side, Judy.

Maybe these hardships are “God things.”…

But on a more positive note, I’ll tell you a story that is definitely a God thing. We have an extra bedroom which we have been hoping to furnish as a guest room since we moved in, but a guest bed seems to always be at the bottom of the list these days. Then on Sunday at church, our priest announced a need for some families to host Ukrainian war victims who are coming to area for medical treatment. They will have surgeries or doctors appointments, and they will need somewhere to stay while they are receiving treatment and recovering. Jeremy and I offered to host someone. We don’t know for sure if we will have a guest, but if our hospitality is needed, the notice will be brief. When we came home from church I started looking at Craigslist for a bed to buy. On Sunday evening, Jeremy and went for a walk and the house five doors down had put a wooden bedstead on the curb with their trash cans. It looked totally usable, if a little scratched and dusty, so we took it! We couldn’t tell if it was full size or queen size just by looking, so when we set it up on Monday we measured it: queen size. Well, that’s a bit more expensive to buy a mattress…but then I remembered! The last time I had visited my neighbor I had noticed they had a queen size mattress and box spring propped against the wall because they recently bought a new bed. I sent a message, “can I buy your old mattress?” They said, if we can move the mattress out of their house, we can have it for free! And not only that, they needed that mattress out of the house by this morning (Tuesday) to make way for some home renovations.

So now we have a bed in our guest room that just needs a few slats to finish assembly, and we can host a Ukrainian refugee. That is totally a God thing.

Face to Face

I realized today that one of the main reasons I’ve been quiet on the blog recently is not because my life is so busy. No. It’s not because nothing meaningful is happening around here, that’s not it either. I think the big reason I’m not posting on the blog is because Jeremy and I are participating in grief counseling. I am able to take the inner conversations that I used to hash out on the interwebs, and I hash them out with our counselor. This activity is exceedingly important and beneficial, and I didn’t fully realize how beneficial the counseling is until I made the connection to my silence on the blog.

We’ve been meeting with the grief counselor for about six weeks, and that pretty much lines up with blog silence. It’s really funny to me that I find myself appreciating the experience so much, since Jeremy all but dragged my the hair into the first meeting. *Sighhhhh* “Okay, honey, if it’s that important to you, we can go…”

The first few weeks of meetings, we just got to know our counselor (we have the same lady every time), and we told her the background of us and Agnes’ story, and what happened when she died. Then we worked on a list of goals so we know what we are working on, and so we can know when we are done. That was hard. How will we be able to know when we are healed enough that we don’t need grief counseling anymore? We had to list specific, concrete markers like: right now I cry at trigger moments twice a day; I’ll know I am “done” when I cry at trigger moments only once a week. For example. We have to learn how to recognize a trigger moment is about to happen so we can redirect ourselves or prepare, and thus manage our emotions. That is a big one. For me, trigger moments happen all the freaking time. If you ever see me weeping in the grocery store parking lot or sniffling during choir practice, now you know why. Trigger moment. I keep saying that like you already know what it means. You can probably guess, but the trigger moment is something that makes me think of Agnes, or something that makes me feel sad, or something that pushes me close to the edge of tears. So basically, anything.

The other thing we’ve been doing with our counselor is, she wanted a list of names of all the people whose lives were enriched or touched by Agnes in any way. That would be a completely separate post. I think I will do it; the list is very impressive. And our counselor wants us to think about all the positive things that are coming of our experience. She told us that even though we feel like it is impossible to even get up in the morning and do our stuff, people look at us and are filled with hope because, if we can overcome the monumental loss of our baby enough so that we are even able to drag our butts out of the house, then they can surely overcome whatever trials they have in their lives. So, we’re supposed to think about things like that. Hope. Inspiration. Are we inspiring? I don’t know. I don’t feel that inspiring.

Anyway, it’s very good that we are meeting with a grief counselor and having these conversations face to face. She is trained to ask the right questions and draw out what we really need to say. She is encouraging and receptive, affirms our feelings and tells us we are totally and completely normal for feeling the way we do. She helps us to see all the sides and she helps us draw comfort from our memories rather than pain. Face to face. A living, feeling person is far superior for this sort of thing than a glowing screen bearing a vague promise that someone might connect.

On a slightly related note, I just want to mention that we are pretty excited because the monument company called us this week to say Agnes’ burial marker is finished; the cemetery will install it soon. This is huge because every time we go visit Agnes’ grave site we’re like, “….I think this is it…maybe…or over here?…This looks right with that tree there….I think I remember these other names being near her…” It’s a nightmare! When I say a prayer over the place where Agnes is buried, I want to be darn sure she is where I think she is! Plus, we’re excited because her stone is really pretty. We’ll definitely take a picture once it’s installed and I’ll put it up here. No worries.

An old picture of Agnes I wanted to share again. Because she’s cute!

Reflection: Moving On

I’ve always been pretty good about moving from one phase of my life to another. I am easily able to tidy up, say goodbye, and close the door on one phase, then quickly turn my attention and energy to getting settled in the new phase. Graduating from high school was easy. A few parties, exchange email addresses, pack for college, great new phase of my life. Finishing college was not as easy, but still manageable. More sadness was involved with parting from stronger friendships. But in the end it was not too difficult to look ahead and turn my attention to the new phase of grad school. Finishing grad school and moving to Montana was hard. I had to part with more great friends and leave a place I liked quite a lot. But here again, it was pretty easy to move on. Moving from Montana to New Mexico. Really hard. Less manageable and I’m still processing that. Moving from New Mexico to Ohio. Hard but because there was so much involved in that decision, there was not really time for anything but a quick transition.

I will be the first person in a long line of people to say that I am horrible at maintaining friendships over these “phase breaks.” It’s wrapped up in my strategy to move beyond a sad situation and focus on the future. I was able to overcome sadness with each transition because I could mentally and emotionally pack up everything associated with the former life and put it away. I miss the people I’ve left behind and I wish I was better at keeping in touch, but on the other hand I’m glad I am able to put away the past and not let it get in the way of my current life. The people I have managed to keep up with, I truly enjoy our friendships! So I don’t know why I can’t do that with everyone. As an aside, if I’ve lost track of you it’s not because I don’t like you! I’m sure I would love to catch up. I will work on improving my nature. I’m not describing anything unhealthy here, at least I don’t think so. I have just learned that it’s pointless to dwell on the past and feel sad  or regretful about events that have already happened.

Anyway, so, all those transitions I’ve described above are about moving from place to place and shifting life stages. Moving on after the death of Agnes has been both similar and different for me. On the one hand, I feel like it’s been pretty easy to do things and live life normally and give my attention to other people and tasks. On the other hand, weird triggers still reduce me to tears. I’m not surprised and before anyone says it, I’m not being too hard on myself. I’m not upset or frustrated with myself that I cry, I’m only surprised that it doesn’t happen more. Why aren’t I a perpetually tear-damp wreck barely two months after the death of my baby? Because that’s not how I process transitions, that’s why. I take care of all the feelings then set the whole business aside so I can focus on what’s next. If there are any lingering emotions, they are usually not debilitating and I can deal with them while I carry on. My lingering feelings about Agnes are debilitating. They knock me out no matter when or where they strike. It’s different for me. I don’t necessarily mind one way or another.

I think the most helpful thing someone has said to me is, “you don’t get over it, you get used to it.” Sometimes I feel like I am becoming used to Agnes being gone, but then suddenly it is a fresh wound again. I can laugh with friends over coffee in the church basement after liturgy, and a mere two hours later I will be sobbing in the car because I drove past an ambulance. I can be totally focused on the symphony chorus rehearsal, and suddenly the director will tell an anecdote with the name “Agnes” in it and I can’t sing for ten minutes.

My grief process and “moving on” is uneven which is a new experience for me, but I expect someday I will get used to it.

Reflection: I Don’t Feel Like It

Every day this week I have come in to the office several times a day and said to myself, “I really should write a blog post today.” It would be good to get back in the groove of regular blogging. It would be good to write about how I’m doing. Lot’s of people care about me and they might like to know what I’m up to.

But you know what, I don’t feel like it. Specifically, I don’t feel like reflecting. It’s hard, it makes me cry, and I would much rather be devoting my energy and time to less difficult activities that make me cry less.

Well yesterday I spent my whole morning helping at church with the pyrohy business they do, and it was really fun. Then I came home and life was suddenly horrible. I don’t know what happened to me but all of a sudden I was trying to throw together a pot of soup and even that was too difficult. Tears. What the hell? And today we went to Divine Liturgy and everything was fine; but this afternoon I put together our monthly budget which I’ve done many times before, but this time it was extremely difficult and nearly panic-inducing. I wondered aloud when might I start to feel capable and effective again.

So with all that being said, I don’t really feel like I want to spend my evening writing a reflection on how I’m feeling, because it’s really a downer. I know I shouldn’t expect to be “over” my grief yet, and I don’t resent myself for feeling sad and weeping for Agnes from time to time. However, I do wish I was more with-it around the home. There are tasks to be done and I am the one who has to do them, if I want them to get done. When I go around feeling incapable and sad, the simple tasks are overwhelming. Then I feel even more down because how could I let such a simple thing upset me so much? Then all of a sudden, I’m shedding bitter tears over a pan of splattering onions, and someone walks in and says, “Okay, so what’s wrong?” as if I have any idea what the answer may be. I could diagram it for you:

I am upset because:

• The onions are splattering and the grease burned my hand.

Due to/because of:

• Poor sleeping and possible hormone imbalance

Due to/because of:

• Stress and possible mild depression

Due to/because of:

• Unresolved feelings of grief about my deceased child.

 

So, long story short, I can get along quite well as long as nothing demanding is going on. I can act normal in company at a public location, and it seems as if I am handling my grief quite well. As soon as something demanding happens, all bets are off.

We’ll get through it, and I know you are going to say I need to be easier on myself. I will try. In the meantime, maybe don’t expect frequent posts. I’ll still try to buzz in a few times a week. Hopefully once our house deal gets closer to closing I’ll be bubbling with all that kind of news. Thanks for stopping in to read, thanks for “listening” to me vent.

Grieving Agnes

Grieving for Agnes is a tricky business. For one thing, it is always tragic when a baby dies. We grieve her life but also the life she never got to live. For the second thing, we should be joyful because she is now in heaven in the arms of Mary and Jesus, and that is where we all desire to be and boy, isn’t Agnes lucky to have got there so soon. And for a final thing, now my family has a little saint whose main goal for all eternity is to intercede for us, her family, and help us to be peaceful and holy and ultimately she will help us get to heaven too so we can all be together. And that’s awesome.

But of course, I am still sad. Very sad. Not all the time, and don’t think I just walk around the house crying all the time, because I don’t. It’s more like all I want to do is lay on my bed and stare at the light on the ceiling. I don’t even want to sleep, I’m not sleepy. I certainly don’t want to do anything difficult like take a shower or reheat food for lunch. But I do these things because I have to. I don’t even really want to play with Stephen or give him a bath or sit and eat with him. I do play with him because he brings me joy, but I’m doing it only because I know that if I do, I will probably feel better. I have no drive to do these normal things, but I do them anyway out of obligation. So maybe that means I’m doing okay. I feel like I am doing okay, all things considered.

But I miss Agnes a lot. I regret that I didn’t make more of the time we had with her. I regret not holding her more. I regret that I left her in her crib when she was asleep because I didn’t want to disturb her. I regret cheerfully turning over her care to the night nurse every night she was home. I think about holding her in my arms, especially while she was dying and those are the times I cry.

It is true that Agnes is now in heaven, and she is already being venerated as Saint Baby Agnes by a few people. Isn’t that sweet? When I think about her spirit being with me and helping me to find peace, I do feel peaceful. She was definitely helping me and Jeremy on Wednesday and Thursday while we were at the calling hours and the funeral liturgy. I felt peaceful, and even a little joyful that Agnes is happy with Mary and Jesus and all the saints, hanging out with angels and enjoying a pain free existence. Her life on earth was so hard and I can’t imagine her discomfort every moment. Now she doesn’t have to endure that anymore, and I am happy about that and relieved for her sake.

So I know all these things and I can get through it pretty well when I talk with someone now about Agnes being a saint in heaven and she is “healthy” now, whatever that means for spiritual beings. But it will take a concentrated effort to keep on doing normal stuff. I can guarantee that I will still cry at apparently random times throughout the day for a while. My family can still use all your prayers, and now you can pray to Saint Baby Agnes to intercede on our behalf and to come to our aid.

Now Jeremy and I have two out of three children in heaven as our particular saints. [Most of you may not know that we had a miscarriage early in a pregnancy a few years ago. The baby between Stephen and Agnes]. We don’t know why we have to be so lucky; we wish we weren’t so lucky, but there it is.

Saint Baby Agnes, pray for us. Saint Baby Joseph Mary, pray for us. All you Angels and Saints, pray for us.

Terminal Again

This time it’s real. This time we have been instructed to choose a time and a place before Agnes chooses it for us. This time the treatments they try don’t work. This time her condition declines and never fully recovers, so she loses something each time.

The doctor told us she talked with all the other ICU attendings over the last 48 hours, and they all agree there is nothing more they can do. The doctor told us we are talking in terms of hours or days Agnes has left. The doctor told us the several episodes of Agnes declining are her body telling us she is done.

Agnes is done.

Done.

Now it’s up to us to let her go. We can try to plan for it by preparing a specific time with the pain-killer medicines needed, all the people who we want to be around, for us to be ready and present and not in the bathroom or down in the cafeteria when Agnes leaves this earth. The longer we wait, the likelier it is Agnes will choose her time, and we might not be there, or our priest might not be able to make it in time, or Agnes might suffer more because the medicine she needs to be comfortable won’t be at her bedside.

So.

How do I announce the death of my child before it happens? Doesn’t that seem weird to anyone else? All I can say is, she will probably go before the weekend is over. We tried to explain to Stephen that the angels were coming to take Agnes to live with Mary and Jesus in heaven, but I’m not sure how much he absorbed. We’ll try again. It was good for us to think about the angels, too. Agnes has one foot out the door, and we’ll stay with her and watch until she leaves with the angels.

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.

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.

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.

Agnes Seems Worse

Agnes has been having a couple of rough days. She has these episodes where she gets upset, and then desats and her heart rate gets too high, and she starts to turn blue, and the nurse has to “bag” her to force in air because even the ventilator can’t work when Agnes is fighting. Then they give a dose of I.V. sedative and Agnes calms and goes to sleep.

That is no way to live, and the docs need to know why this is happening, or at least find a way to prevent and minimize the occurrence, because they can’t send Agnes home if she needs to be rescued from acute respiratory failure once or twice a day.

Today they changed a setting on her ventilator hoping that may help, and they finally added regularly scheduled doses of sedative, which Agnes could very well use long term even after she is discharged.

The pulmonary specialist who is on call this weekend intimated that December 4th is not a realistic date for Agnes’ anticipated discharge, since they still need to do a bunch of legwork to discover the source of these critical episodes. Plus they changed a setting on the vent, so the “stable for two weeks” period starts over today.

And yesterday they took a bunch of blood samples for diagnostic tests, and found that her white blood cell count is elevated. Again. So they took the full selection of samples for culture and we’ll see if there is an infection. Again. And they’re giving 48 hours worth of antibiotics. Again. At least they are leaving her shunt alone this time.