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.

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.

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

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.

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!

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!

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.

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!

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.

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 is Home, for the fourth time

I have been extremely lax in posting, but I find it difficult to get away for as long as it takes to write something thoughtful and profound. Or at least something thoughtful. Or at least something. I am stealing a few moments here to write a quick update on the latest happenings in Agnes’ saga.

Jeremy and I passed all our training challenges and did a 24-hour shift of care at the hospital. That went very well, and I’m glad we did it because now if one of Agnes’ home care nurses doesn’t show up, we have some experience with what happens over the course of 24 hours. Agnes is really easy at night, and it is nice to know that going into a no-nurse emergency, because then all we really have to worry about is how do we stay awake.

Anyway, Agnes came home in an ambulance on Wednesday afternoon. A transport team took her from her room and rode with her home, and I rode in the front of the ambulance. An employee from the equipment company and the case manager from the home care agency both met Agnes at home. We all got her settled and hooked up to her home machines. She did settle in very well. She didn’t throw up during the first couple days at home like all the other homecomings. She didn’t take a sudden turn for the worse within the first few days like all those other times. Her respiration still seems fine. Her nutrition still seems fine. Her belly is still distended, but we are measuring it every day and so far there is nothing alarming. Agnes is sleeping a lot yesterday and today, but when she is awake she seems content. She likes to watch Stephen play. She likes to look at the dog and the cats. If a cat jumps up on my lap while I hold Agnes, she is very interested in that. She doesn’t really like to touch the fur, but she likes to watch them. Another nice thing is Agnes has no doctors appointments soon after discharge. I think her first appointment out of the home is on Dec 23rd. She does have some people coming to the house to visit her, but I am happy I don’t have to drive her back to the hospital campus over and over within the first week of being home. That feels like a real luxury.

We have twelve hours of home nursing now, from 7pm to 7am most nights, and 6pm to 6am on Saturdays. So far I have not been able to take advantage of an earlier bedtime; I learned to stay up late when we were getting 11pm to 7am nurses, and I can’t kick the habit! We are trying to settle in to a new routine that doesn’t involve going to the hospital. Also, I know Christmas is in a week and a half, but we have done nothing to get ready yet! No gift shopping, no baking, no dinner planning! I don’t know how we’ll get it done, but we will.

Our biggest prayer right now is that Agnes stays well enough to be home for Christmas. That would be so special, and her first holiday at home.

On the day of discharge, waiting for the transport team to show up.

7 Quick Takes: December 6

What? She’s posting during the week? Luckily it’s Friday which means I can sit back and enjoy a quick takes post, about 7 random things, none of which have to make any sense or complete an entire post on their own.

Linking up with Conversion Diary for this one. Head over there to read more link ups.

1.  Jeremy and I took some more recent pictures of Agnes this week. It was difficult because she’s sickly and she often looks kind of crummy. But we managed to snag a pretty good one:

2. Jeremy and I are scheduled to complete our 24-hour care tomorrow from 8am Saturday to 8am Sunday. We still aren’t quite sure who will be sleeping when during the time since one of us has to be “on” at all times–no help from nurses or doctors. This is the last thing we have to do to get ready for Agnes to come home. My dad is finishing some rewiring in the house to accommodate life support machines, and the home care nurses are completing their training. Agnes is tentatively scheduled to come home Wednesday.

3. I say tentative because she must be in medically stable condition. She has been set on the ventilator for the required two-week time frame, so there’s no problem with that. However, she has lately presented with some distention in her belly that is not resolving despite the numerous strategies employed by the intensive care doctors. They tried draining her stomach contents with and without suction to remove excess gas. They took a bunch of tests (x-ray, ultrasound, echocardiogram) to rule out all the possible causes. There is only one obvious cause left: her shunt. Accursed shunt. So the plan is to give Agnes a dose of diuretic to see if that helps, and watch her closely over the weekend. The neurosurgeon is okay with her carrying on if her belly doesn’t get any bigger, but if it does, he will want to externalize her shunt. Again. And send away for cultures of Cerebral-Spinal Fluid. Again. And wait a few days then reinternalize the shunt. Again. Only this time, he would thread the catheter into Agnes’ heart rather than into her abdomen, which is absolutely the very final option because they hate to do VA shunts, especially on trach kids. It will have to be revised in six months because they can’t put extra tubing like they can for VP shunts. Plus trach kids have a 10% risk of infection with VA shunts. 10 percent. Holy freaking cow. So that’s not awesome and it all depends on whether or not Agnes’ girth continues to measure 47 cm or less.

4. With the help of all our friends and family and our church, and everyone who made a gift through our website, wee are going to buy  this van for Agnes:

It’s a 2004 Nissan Quest with 76 thousand miles. We tested it and it drives very well, and the dealership recently had a ton of work done on its brakes. It doesn’t make any weird sounds when running, which is already better than the cars we drive now. There is a ton of room inside for all of Agnes’ medical equipment! We can’t thank you all enough for your gifts and support to help make this happen!

5. I’m having a hard time thinking of anything to write for takes 5 and 6. Well, I cooked macaroni and cheese for dinner tonight from The New Best Recipe cookbook. I love America’s Test Kitchen with all my heart, except when they tell me that the way I’ve always made a certain recipe is total crap. Or when they tell me that an ingredient I always use is not even fit for dogs to eat. But other than that, I love America’s Test Kitchen.

6. Can someone please consider getting this for Agnes’ Christmas present? kthxby

7. Okay, finally, I wanted to put the pictures from our trip on the Polar Express last because there are quite a few. The Palliative Care Team at Akron Children’s Hospital gifted our family with tickets for the Cuyahoga Valley Scenic Railroad Polar Express. We took Stephen and he had a grand time. If you ask him if he had fun riding the train, he replies “Yeah! Goldfish crackers. Gummy Bears.” We bought those snacks from the cafe car before the train left the station. I guess that is more interesting than the elves, or Christmas carols, or the “North Pole,” or meeting Santa. Whatever. Goldfish crackers. Gummy bears.

walking to our car to board.

Jeremy was probably more excited than Stephen to ride the train. Name me a boy who doesn’t adore trains!

We’re happy!

At the “North Pole,” aka Peninsula, Ohio. A bunch of volunteers stood along the track, dressed as elves.

Stephen met Santa and made strange faces at him. Weird kid.

Every kid got a “bell from Santa’s sleigh,” like in the Polar Express book.

What I Wore Sunday: December 1

Hi everyone, I’m sorry I didn’t post all week. Today I’m back with Fine Linen and Purple for the Sunday fashion linkup.

It was the week of Thanksgiving, so I will use that as my excuse for not posting, but also I’ve been super tired and lazy all week. At the end of the day, after visiting Agnes at the hospital and cooking dinner, and entertaining Stephen and putting him to bed, all I want to do is crash on the couch and read a novel. I probably could have found some stuff to write about, but I couldn’t muster the enthusiasm.

Well, anyway I do have some things to write about today! Let’s start with the fashion. I decided to repeat the outfit I wore a few weeks ago on the day we took Agnes through the Emergency Department. This is a skirt from Lane Bryant, bought on clearance. It was the only long skirt in my size so I’m really glad I like it! I’m also wearing a long-sleeve shirt from Motherhood Maternity, which still fits because of a horrible combination of unfitness and laundering shrinkage. As the top layer, I chose a black sleeveless sweater vest thing I received as a gift a couple years ago. I am also wearing my black Minnetonka Moccasins, but they aren’t quite visible. Finally, I’m wearing earrings! There’s a story there: I used to wear earrings all the time, every day, even when I was just hanging out at home. When we moved to Rio Rancho, I started to have problems with the earrings irritating my ears, becoming sore and producing a bit of drainage. Gross. So I tried cleaning all my earring posts with rubbing alcohol before putting them in. That didn’t help either, so I finally gave up and stopped wearing earrings entirely. This past week I put in a pair of earrings, and they didn’t hurt! My earring holes hadn’t closed up, the earrings were fine, and I was able to wear them all day! The next day, I tried a pair and they hurt. Boo. But today I’m having no trouble at all. I’m not sure what the difference is; these are the same earrings I’ve always worn in every city I’ve lived in. I’m not sure why I had trouble with one of the pairs I tried this week but not with the others. It’s a mystery, but I am happy to start wearing earrings again!

In my photo, I’m posing with Jeremy’s new car. It came upon us suddenly that we need all new vehicles. We’ve known for a while that we need a minivan to drive Agnes around with all her equipment. We’re actually pretty much ready to make that purchase within the week, once all the final donations trickle in. But in the midst of the van discussion, Jeremy’s VW started having trouble too. He already knew it was nearly time to replace it, and since it started having mechanical problems, he decided to replace it now! So with the help of a small loan through the dealership, he was able to get a “new” Suzuki Forenza, manual transmission. He’ll use it to deliver pizzas. I’ll learn how to drive it too, even though I will mostly use the van when we get it. I’m excited to learn how to drive a manual transmission car. I’ve never done that, but I feel like it’s something I should know how to do, to be a well-rounded person.

Speaking of Agnes, she has been doing well the past few days. She is stable on her home-going ventilator, and the doctors have successfully weaned her oxygen requirement down to 1 liter, which is about where she was before this admission. I am super happy about that. Jeremy and I are in the midst of training. Today we just got “checked off” for changing the ventilator tubing and stuff, and I passed the terminology quiz. We both still need to be checked off for bagging, and giving Agnes her inhaled medicine using the bag. Then we can do our 24 hour care. It looks like Agnes will be ready to come home around December 10, if she is medically ready and all the other stuff is done. Then we plan on keeping her home for Christmas. She hasn’t been home for any other holiday, except possibly Columbus Day and I’m not even sure about that. Hopefully with the ventilator she will be able to stay away from the hospital for longer than a few measly weeks.

We could really use continued prayers for Agnes and our family. Thank you everyone who has been praying for us and supporting us through these difficult months. There’s a new page on my blog with more info about that.

Head over to FLAP for more Sunday posts.