Laughing, Weeping, Living

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

Up in the Air

There is not too much to report on Agnes since a few days ago, other than her overall condition appears to be stable and slowly improving. Yesterday she did very well maintaining a body temperature without the hot air blanket or the medicine that assists with perfusion. She is also in process of weaning down the hard-hitting narcotic pain killers. She is also clear of the intestinal infection that caused some swelling and “free air” in her belly. Her lungs sound back to baseline for her, which is to say they are stiff and slightly diminished on the left side, but at least she’s back to “normal.” She is happy on her home ventilator.

But today they decided to try stimulating her guts by starting tube feeds at a very slow rate, and she didn’t like it. She spiked a temperature and some formula seeped back out to her stomach where it appeared in the suction tubing. I guess that’s the nice thing about Agnes’ G/J tube: you can feed her guts while leaving the stomach open to suction, which helps prevent throwing up. So Agnes demonstrated an intolerance to food, so they stopped feeding her. I’m not sure what the plan is for restarting.

Plus it is not clear whether her shunt is actually working or not. I do believe that it was functional at the time of the CT scan a few days ago. But in the meantime, the neurosurgeon tapped off some fluid and that procedure demonstrated a very high level of pressure in Agnes’ ventricles. Plus today she was very sleepy. So…I guess we’ll see on Monday what the next CT scan shows.

All in all, we are still in a grey area. Agnes did improve her condition since last week; she is like a new baby! We are grateful for that and happy that she didn’t die. But as we go on, it is not clear whether this recovery is lasting, or if she is on her way to a relapse. We are very conflicted about how to proceed here. We were sad she was dying, but also a bit relieved that she wouldn’t have to suffer anymore. Now that she got better, it feels as if we are traveling the same road again, the road of suffering. The fact that Agnes did recover is a miracle and the mid-week news that her shunt was working felt like another miracle. Those events happened and many people derived spiritual benefit and faith, and trust in God because of those events. Now we know that thousands of people are praying to saints and to God on behalf of Agnes and our family, which is amazing. Even if Agnes takes another turn for the worst this weekend, that extra week she was here brought boundless grace to thousands of people. Who knows what she will do from this point forward, but every day she is here is a gift and an opportunity to draw close to the Lord and experience grace.

Advertisements
1 Comment »

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.

3 Comments »

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.

21 Comments »

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.

2 Comments »

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.

2 Comments »

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!

4 Comments »

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.

8 Comments »

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.

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

3 Comments »

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:

100_1906

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.

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!

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

We're happy!

We’re happy!

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

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.

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.

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

3 Comments »

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.

100_1901Well, 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.

5 Comments »

%d bloggers like this: