Laughing, Weeping, Living

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

Terminal

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

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

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

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

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

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

She is dying.

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

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

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

Thank you all for your continued prayers.

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Stupid Shunt

Agnes was home for one week then on Monday morning early she was up to her old tricks. The overnight nurse did something like change a diaper or reposition Agnes, and she got mad. Her O2 saturations dropped and they wouldn’t come back up. We tried a bunch of stuff. She puked. We called in and they told us to go to the Emergency Department. We arrived and prompted a flurry of exciting, critically urgent care. They rescued Agnes with aggressive treatment. Agnes was admitted to the PICU. X-Ray and CT films were taken, cultures sent away to check for infections, heavy-duty hospital ventilator was fired up and Agnes got snuggled in for a inpatient stay.

We were hoping all her outpatient follow ups we had scheduled for this week would have satisfied her longing for hospital life, but she missed her favorite PICU staff. She must have heard that her favorite intensive care doctor was attending on Monday morning or something.

Anyway, to make a long story short it ended up being a shunt malfunction at the root of her distress this time. Plus a bit of an upper respiratory infection (read: a “cold”) thrown in for fun because why go halvsies when you can go all the way?

The neurosurgeon repaired Agnes’ shunt yesterday by replacing the valve and flushing out the two sides of the shunt tubing, but today it appears the problem is not solved. The brand new valve works great! The shunt is still not draining out her brain juices, though. So the neurosurgeons have three more things to try:

1. flush the distal side of the shunt tubing (the end that goes to Agnes’ heart) with an anti-blood clotting solution to break up any clots, if there are any. It is possible there is a small clot in the catheter that is preventing flow. They will try this tomorrow (Thursday) morning.

2. go to surgery to reposition the distal side of the shunt tubing deeper in Agnes’ heart so that the high pressures in her heart can not push the tubing out of place. They will try this Friday.

3. if those two solutions fail to produce a working shunt, the last thing to try is placing the shunt to Agnes’ gall bladder. This is very uncommon and has an iffy rate of success in even the more favorable patients. The neurosurgeon said he hasn’t done one of these in years. Also the risk of infection is much higher because…gall bladder. They will try this if/when the VA shunt proves a failure.

And that’s the end of the line. If Agnes burns through that short list of options we are done. There is nothing left to try on the cure-focused path and we switch by necessity to the path where we keep her comfy and manage her symptoms until she dies. We did start the conversation about hospice options today, just to start gathering information.

Jeremy and I are both very sad. Given Agnes’ history with her shunts, there is only a slim chance any of the final three options will work. There is still opportunity for a miracle, but I’m not counting on it.

Of course we remain grateful for your prayers. We are counting on them at this point. We don’t necessarily want prayers for healing; that is not realistic. Prayers for strength and discernment of God’s will would be lovely. Prayers for the doctors and medical staff who will be talking with us in the coming days and weeks. Prayers that we will always choose the course of action that will be best for Agnes. Prayers that we will feel peace about the decisions we make. Prayers that we will know it if the time comes when we must let go of Agnes’ earthly life.

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Christmas Surprise

On Christmas Day, we were in the midst of Agnes’ shunt saga and coming home was not even on our radar. We went to church and had a nice family dinner, we visited Agnes in the hospital and wondered how her shunt surgery would go on the day after Christmas. We snapped a few photos:

Merry Christmas from Agnes in her cute booties.

Merry Christmas from Agnes in her cute booties.

After Divine Liturgy on Christmas morning.

After Divine Liturgy on Christmas morning.

Agnes did do well with her shunt surgery. So well, in fact, that she was transferred out of the PICU on Saturday, while the rest of us were in Perrysburg, OH for a holiday gathering of extended family. I got a picture with my grandma:

Four generations: my grandma, my dad, me, Stephen.

Four generations: my grandma, my dad, me, Stephen.

When we came back to Akron and visited Agnes on Sunday, several people asked us if we were still planning to take her home that day, as in Sunday. Um…no that’s not really possible. We thought maybe by Tuesday all the home care stuff would be organized; that’s what we were expecting.

On Monday morning, I went with Stephen to visit Agnes while Jeremy took care of some car business at the BMV. As soon as I arrived at the hospital, before I saw anyone or spoke to Agnes’ nurse, I got a call from home with the message that the home care agency would be out at our house to reopen Agnes’ case since she was scheduled to come home that day, as in Monday. Well, that was news to me. So I called Jeremy and told him to bring all of Agnes’ travel gear when he was done at the BMV.

It was a whirlwind, but we still managed to keep the tradition of discharge-day photos:

snapped a selfie

snapped a selfie

daddy wanted to do a selfie, too

daddy wanted to do a selfie, too

We brought Agnes home in her Christmas present minivan, and she did a great job. No crying, perfect O2 sats, no puking. She has been very stable since coming home. She has been able to sat 100% almost all the time on a mere 1 liter of oxygen, which is something she was never able to do. Not since the week or two immediately after coming home with a trach only.

I can’t even believe she came home after only two weeks in the hospital. I am still amazed by what seems to be a miraculous recovery. It is hard to believe that only two weeks ago, she was so sick we were talking about what to do if it was The End, and the social workers were whispering “hospice care” to each other. And now, she seems to be healthier than ever, at least from a respiratory standpoint. She still has a bit of mysterious distention in her belly, which can’t possibly be shunt-related anymore since the shunt is now in her heart. If it’s not brain fluid, then what is it?

On the one hand, I am thrilled to have Agnes home and I want to relax and settle in to a routine at home, and feel like a “normal” family, as much as we can. But on the other hand, I keep expecting Agnes to pull a fast one in two or three days, “I told you so!” and end up back in the hospital.

Only she knows the truth.

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Agnes’ New Record

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

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

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

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

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

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

Shit.

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

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

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

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

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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.

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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.

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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.

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This Post Brought to You By Chocolate and Red Wine

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

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

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

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

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

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

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

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

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

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

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7 Quick Takes: November 8

Linking up with Jen and the gang at Conversion Diary. I missed last week, but I’m happy to be back!

1. So, it’s really nice having Agnes at home and all, but I did have a lot more time to do stuff when she was in the hospital. Please don’t judge me, but I did really enjoy having time to blog in the evening after Stephen went to bed, or to sleep in past 7 a.m. Plus it’s super stressful having both kids at home. I know it’s super stressful having more than one kid as it is, but with Agnes, I’m pretty much chained to her bedside since she’s connected to two to four machines at any given time and her cords only reach so far. I spent most of my day today sitting in the chair near her bed, holding Agnes in one hand, entertaining Stephen with books and coloring in my lap, and wiping his runny nose with my free hand. It wasn’t the worst day I’ve had, but it kind of sucked.

2. At least there were some funny moments. For example, Agnes’ pulse-ox monitor stopped reading for some unknown reason and it was making that horrible “beep beep-beep” sound. I couldn’t silence the alarm because I had just gotten Agnes settled with me in the chair and her feeding pump running, so I asked Stephen to push the “yellow button on the monitor.” He did it, and the cursed beeping was silenced. That’s my boy! He likes Agnes’ stuff: her pusle-ox monitor, oxygen tank, suction, cords, her trach, all of it. He knows what all the stuff is and what it’s all called. Smarty pants.

100_18743. Also I took this picture last week. Apparently this is the correct way to eat pizza. ¬†Stephen eats much of his food in a similar manner. He takes a few bites out of eat sandwich half before going back to finish. He eats half of each cracker first. I don’t think he’s protecting his plate from mommy and daddy thieves since we take his pieces often even if he has partially eaten them. I think he just likes to do it this way.

4. While Agnes was in the hospital she outgrew some of her cute newborn size clothes. I was sad, until I realized that they are the perfect size to cover those “fluidized positioners” we got when Agnes was discharged. I guess they can only be used for one patient, so we got to bring them all home. I think the clothes are way cuter than the thin hospital covers the positioners came with.

100_1889

5. We have had a good response to our fundraising website. We are still in need of a van to transport Agnes around. Our little car is tight in the backseat with a toddler car seat, Agnes’ car seat, and the adult who rides with Agnes. It’s ideal to have an adult caregiver riding to watch Agnes, just in case she gets into trouble. The monitor is often unreliable in the car; I need to be able to see her color because she gets so worked up. The hard part about riding in the backseat is, I can’t even buckle my seatbelt in the back because there is no way I can reach the buckle. And my hips are wedged between Agnes’ seat and the door. God forbid I actually need to do something in an emergency like suction her trach or get in her travel bag for the ambu bag because she is in distress. I can’t really even reach her bag even though we drive with it in the car, in the front seat. There isn’t enough room to drag the bag into the backseat without clobbering Stephen in the face. And even if we got the bag into the backseat, there’s nowhere to put it. If Agnes had an emergency while we were driving, we would have to find somewhere to pull over, stop the car, leap out and go to the front passenger door to get the bag, take the bag to the backseat, get out the supplies that we need, then get to work on Agnes.

So, if you want to make a small gift to help us purchase an adequate used minivan that will afford us the interior space we require, we would be eternally grateful!

100_18876. I have to put this photo on even though it is so dark. Earlier this week, Stephen requested to take a nap. I was so surprised, but I put him in bed thinking he would change his mind and not fall asleep. But he did fall asleep! It was nice; I held Agnes in her chair and lolled around for an hour, recharging. When I went to get Stephen up, he was still fast asleep. I had to sneak a picture, he looked so peaceful and adorable with all his stuffed animals and the blanket up to his chin. He has his platypus which has been his special lovey for just over a year, now. I’m not sure why he picked that of all the stuffed critters, but he did and pretty decisively. Too bad it’s a “retired” Beanie Buddy first generation Patty the Platypus that we have to scour Ebay for to replace. He has two that we rotate–one to wash, one to wear. He also has a monkey that has a removable scented pouch in his tummy that you can microwave for warm, soothing scent. Stephen doesn’t like it warm, though. He just likes to change the monkey’s diaper using his own diapers, which I think is weird and Jeremy thinks is hilarious. Hmph.

7. I heard this song on the radio the other day and I really like it!

Enjoy your weekend!

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Busy Week

We brought Agnes home on Monday, and it has been a busy busy week. Agnes had a pediatrician appointment on Tuesday. It was our scheduled 4-month well baby visit. Funny story, the appointment was actually on Monday, but in my mind I thought it was Tuesday so I never rescheduled because with a Monday discharge she would make the appointment easily. So I’m on the way in the car, and I suddenly get that feeling, you know the one. I called Jeremy and asked him to check the calendar. Well, shoot, I was totally going to be on time except now it looks like I am actually 24 hours late. Jeremy called and they were gracious enough to let me come in anyway, so Agnes had her appointment on Tuesday.

Then on Wednesday Agnes visited Neurosurgery for a shunt check up. It’s working.

Then today Agnes visited Neurology for some sort of follow up. Agnes is delayed, partly because of her lengthy hospital stays, partly because of her chromosome stuff.

In the midst of all this, we’ve been calling to get in-home therapies restarted. We’ve fielded calls from the Social Security office and BCMH. We’ve scheduled home care equipment deliveries. We’ve had visits from home nurses and social workers.

Tomorrow we don’t have to go anywhere, thankfully. That’s fortunate because Agnes hates to ride in the car so much, she gets sweaty and breathes hard, and her color gets really weird and I worry about her. She’s even puked a couple times because of a stressful car trip; but so far today no throwing up. I’m hoping she can settle a bit over the weekend before we move back into the week. Next week we don’t have very many appointments, plus we should start getting more hours of private duty nursing next week. That will be a big help!

Okay, that’s all I have time for today, but I wanted to give a quick update!

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