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!

Discharged!

We brought Agnes home from the hospital today for the third time in her life. This time she was only in the hospital for 3 weeks, and she is coming home with exactly the same requirements as what she needed when she went in 3 weeks ago. We had asked to be discharged in the morning, and we were on the way to the elevator at 11:55am, so that was good. Of course Agnes was hysterical the whole way home; she had never really cared for riding in her car seat, and she was not happy to be back in it after a 3 week break! Otherwise, Agnes looks really good, she adjusted well to being home, she hasn’t thrown up once since we’ve been home which is already a great improvement over the last homecoming! We are going to get twelve hours of private duty nursing each day starting next week, hopefully. In the meantime we’ll have our usual 8 hours overnight. Agnes is going to receive the monthly vaccine for RSV, which is awesome. We are all pleased that she is home! Now some pictures:

In bed at the hospital, “I thought I heard someone say I was getting out of this joint?”

Dressed and ready for the trip home!

It’s been 3 weeks since she rode in a car seat!

Getting our snuggle time in, in a big way!

Happy to be home!

Sweet Baby Agnes smiles!

 

 

 

 

 

What I Wore Sunday: October 27

Linking up with Fine Linen and Purple.

Today when I woke up, I stood in front of my closet for 10 minutes contemplating my choices. I had a couple shirts to choose from, a few more skirts, and a few dresses that are not quite cool-weather appropriate. It was tricky. I need to buy some more clothes. Anyway here’s what I decided to wear:

I’m wearing the skirt from last week, my trusty black Merona Target skirt I’ve had since high school. I’m also wearing a Daisy Fuentes shirt I think I got at the Goodwill in Billings, MT but I have rarely worn it. I have long thought the shiny fabric was not very flattering, but since lately I have so few choices, I’ve been wearing the shirt anyway. This morning when I got Stephen out of bed, he pointed at my shirt and said, “pwetty.” Toddler approved. I’m also wearing my new Clarks boots. My pink watch was a Christmas gift from Jeremy. It’s a Relic brand watch. It came packaged in a pretty sturdy little tin that seemed like a waste to throw away, so we kept it. We use it to store all the holy cards we have with relics. It’s our Relic reliquary. Ha!

Today the Eastern Catholic calendar celebrates Christ the King, or at least that’s what my calendar at home says. You would not have known there was a feast day from the liturgy because the music was all just from the regular Sunday rotation. I don’t quite understand the hierarchy of feast days in the Eastern calendar; in the Roman calendar, Christ the King is a really big deal with different hymns and prayers. The really big feasts in the Eastern liturgy have all kinds of special music where you change out the regular songs for the festal songs, less important feasts have some special music, and the least important feasts have maybe one special song. All the other feasts seem to be simply noted on the calendar. I’m sure I will come to understand more and more. I hope. It’s been a couple of rough weeks in the choir since the lady who leads has been on vacation. She’s coming back next week! I don’t know if I will be able to sing in the choir once we can start bringing Agnes to church; it all depends on if I can convince Stephen to come upstairs with me!

After liturgy, we went to visit Agnes at the hospital. Tomorrow she can come home! We’ve requested a morning discharge, so hopefully we won’t be stuck at the hospital all day. It will be nice to stay home and snuggle Agnes freely, and not have to go to the hospital every day. Too bad Agnes has so many doctors appointments! I think I have to take her to the pediatrician on Tuesday already! Well, we’ll get some down time at some point this week. While we were at the hospital today we watched the Disney Channel to keep Stephen occupied. We caught a few episodes of “Dog with a Blog” and it was hilarious! I wasn’t expecting to like it, but it was really funny. The premise is that the family pet can talk and only the kids know it. The dog writes about the family on his blog after they all go to sleep at night. If you ever have to watch kids television programs, I recommend that one. Stephen was actually not very interested beyond “puppy!” but Jeremy and I both enjoyed the show!

I guess that’s all we did on Sunday. You can read other bloggers at Fine Linen and Purple.

Trick or Treat

Stephen loved dressing up as a penguin. And it didn’t take much explaining to convey the idea that we were going to go from house to house and each person would give him candy. I coached him on how to say “trick or treat!” and “thank you” and he thoroughly enjoyed the excursion. We just went around the block and he got plenty of candy for a 2 year old, even though there weren’t that many houses open for business. Stephen liked walking outside, and he liked looking at his penguin feet while he walked. We got lots of compliments on how cute he looked.

After Stephen did the trick or treat, I put him in the car to go visit Jeremy at the pizza shop. All the employees were dressed in costume, and when we walked in there was a “penguin in the house!” announcement and all the gals were impressed by Stephen’s overwhelming cuteness.

When we came home, I let Stephen eat a few pieces of candy, and I explained that we would eat a few pieces every day until the candy is gone, and he seemed to accept that. He didn’t cry when I put his treat pail up on the counter. He also allowed me to remove the penguin feet, and his sweater, but when I went to put the sweater on its hanger, Stephen wanted to wear it again! So I let him wear it for a few more minutes while I got his bath ready. I have a feeling we’ll be showing the penguin sweater to the nice folks at church tomorrow. That’s okay.

I enjoyed making Stephen’s little costume. It was not complicated to do and it was inexpensive; I think the sweatshirt was the most expensive item and it cost $7.00 only. I really recommend crafting the Halloween costumes rather than purchasing a pre-made costume or kit. You can choose absolutely anything to be, you get to be creative, it stretches your thinking to plan the idea and execute it successfully, and you can put personality and unique flair into it. It was fun to make a cartoony penguin for Stephen. And fun to watch him wear it!

Before going out to trick or treat.

Flannel cut out eyes, and craft foam beak. Flannel tummy patch sewed to sweatshirt with cut outs for the pockets and zipper.

He’s ready to eat some of his loot!

 

 

7 Quick Takes: October 25

Hi everyone. This week the 7 Quick Takes linkup is being hosted at Clan Donaldson. So I’m joining in at that fun blog.

1. The great city of Cuyahoga Falls, OH–as well as many other cities in the area here–have a scheduled date and time for Trick Or Treat. Cuyahoga Falls is trick or treat-ing tomorrow from 6 to 8pm. I think it’s great there is a specific time and date. That means we don’t have to guess who is going to be ready when and hang out with our bowl of candy from 4pm to who-even-knows pm on Thursday night October 31. When we lived in Billings, there were trick or treaters really early in the afternoon. I remember specifically asking Jeremy, “when does trick or treat start?” and he looked at me like I was from a different planet. I guess I am from a different planet: the planet Northeast Ohio where the cities are kind and smart enough to schedule trick or treat. I know I would rather not take my kid out on a weeknight. Or conversely, show up at someone’s house at 5pm and they don’t even have their candy ready yet. That would be embarrassing!

2. On a similar note, Stephen’s adorable penguin costume is ready! I bought a black hoodie sweater, black sweat pants, some white flannel fabric, and a few sheets of orange craft foam. I sewed a white “tummy” to the front of the sweater, made feet from the foam that will tie around Stephen’s ankles with elastic, and I sewed eyes and a foam beak to the hood of the sweater. The “tummy” is pretty secure; I made sure it was quality stitched so he can wear a cute animal sweater after Halloween. I’m not sure about the eyes staying or not; I might add little ears so his sweater is too cute to even bear. Haha. “Bear.” Get it? Don’t worry, I’ll take pictures!

3. Speaking of Stephen, he has a fun new game to play in the bath. It’s called “monkey pack” and this is how you do it: 1. slap a washcloth on the inside wall of the tub. 2. layer on some foam bath toy monkeys. [optional 2b. count the monkeys]. 3. slap a second washcloth on top of the monkeys. 4. fold up the monkey pack and stuff it in a little bath toy bucket. 5. announce “monkey pack!” 6. Repeat.

4. Agnes is officially coming home on Monday! We are pretty excited. The home nursing agency was not able to coordinate our private duty nurses over the weekend, which is fine and pretty much what I was expecting. Agnes moved up from the PICU and now she is on the floor where all the trach kids go who don’t require intensive care. I will miss the PICU staff! I really like the nurse practitioners down there especially. The staff on the floor is great too, but it is a lot busier and the nurses all have more patients to care for. In the PICU, nurses only ever have two patients, so it’s a difference. Plus, our PICU room was nice and big with large windows. Sigh. At least it’s only for a couple days.

5. I just want to say a bit about the power of prayer. One week ago, Jeremy and I had a big meeting with the PICU doctor, the pulmonologist, some Palliative Care people, and a PICU social worker about Agnes’ long term care, and what the plan was for her treatment. No one could say whether she would depend on a ventilator or not. They had not yet started weaning the vent settings. Two weeks ago, Agnes was completely dependent on a ventilator, she was barely breathing on her own, she required regular doses of sedative because when she was awake, she fought the ventilator and became distressed. We were seriously talking about how we would deal with a baby on a ventilator, and planning our lives around a couple months of hospital time. Three weeks ago, Agnes was close to death. I mean it. They couldn’t give her enough oxygen; they couldn’t sedate her enough; they couldn’t feed her stomach food.

And today she was breathing totally on her own, with exactly the same equipment and oxygen and medicine (except for one med) she had when she was at home last month. She was alert, looking around her room, reacting to me and to Stephen, responding well to occupational therapy, tolerating her bolus feeds, maintaining a decent oxygen saturation.

Of course the doctors and nurses were working hard, but everyone praying for Agnes was working harder! Someone told me today that she honestly didn’t believe Agnes could kick the vent this time. Agnes did kick the vent, with the help of your intercession! Yesterday Jeremy and I prayed our rosary for the intention that Agnes would come home soon. That same afternoon the NP told us she wanted to discharge Agnes today. Prayer works. Miracles are real. Agnes is a miracle and a living example of the power of prayer.

6. Now to totally change the subject, my dad brought home the most enormous head of cabbage I have ever seen. ever. I have been intending to make Ukrainian style cabbage rolls with some of the cabbage, but I keep missing my opportunity. Jeremy offered to make some coleslaw, but there are still 4 more pounds of cabbage to deal with. Does anyone have any good ideas?

7. Stephen has thrown fewer tantrums this week, or at least, I have paid attention to fewer tantrums. I’m also trying something new: I ask him what he wants to eat for dinner/breakfast. So far he hasn’t requested anything objectionable. Yesterday he wanted “cereal” so I asked, “oatmeal or cheerios?” and you can guess what he wanted. This morning he wanted “jelly. peanut butter and jelly.” but he asked for it in a cute toddler voice that I can not transliterate. I am still so thankful he likes eggs again, and we have started giving him a gummy vitamin each day. He always requests “more” vitamin. I’m totally jealous of his vitamins.

Okay, so not very quick takes, but still, I hope interesting takes. Head over to Clan Donaldson for more!

Surprise!

This will be super brief:

The PICU doctors want to discharge Agnes tomorrow. Wait, what? At least that was my reaction this afternoon when the Nurse Practitioner told me the decision. Well, they want to watch her for one more night to make sure she is okay without the vent, and then they don’t want to send her up to a floor for just one night and make the new staff learn about her just in time for her to be discharged, so they want to discharge her tomorrow from the PICU. I wonder how often the PICU gets to discharge patients?

Anyway, I personally don’t think Agnes will come home tomorrow because we need to organize our private-duty nursing for nights again, and this is Really. Short. Notice. Plus the supervisor at the nursing agency is out of town over the weekend starting now, and the guy who usually does the scheduling is also out of the office. So. The agency and the hospital will communicate tomorrow morning and we’ll see what gets worked out.

So, Agnes is clinically ready to come home, and as soon as the home nursing is set we’ll be on our way!

I’m surprised and happy it will happen so quickly, but I’ll miss watching PBS kids shows with Stephen. It’s just not that easy to do at home. But that’s the only down side to bringing Agnes home!

And one last thing: Miracle!!!! Thank you everyone for your prayers you continually offer. Agnes is coming home this weekend because of your prayers. That’s the truth.

So Far So Good…

Today Agnes moved off the ventilator and off the CPAP and is now breathing totally on her own! Yay! She is getting oxygen just like she did at home, with a mist collar just like at home. She is now back to her “baseline” which is an extremely relief. She does get an inhaled bronchodilator medicine which she did not have before, but other than that her medicines are the same, too. I am so proud of her!

The results of the echocardiogram show that Agnes’ pulmonary hypertension is no worse than it was before, and since she appears to not need ventilator support, the doctors have decided to not use the experimental medicine. That’s fine, I guess, but I am worried what Agnes will do when she gets mad and starts to desat like before. She didn’t really while I was there today, but the nurses did nothing more than diaper changes. I’ll be interested to hear how she does with a bath and trach care and whatever else they try tonight. If Agnes desats a lot, they may put her back on the CPAP with or without pressure support, I don’t know. I seem to have misunderstood the debate about the pulmonary hypertension medicine. I thought that if the echo didn’t look better, they would consider the medicine. I thought it was maybe about the medicine or continued vent support. But what it now looks like is, the echo looks no worse, and Agnes is currently doing fine without the vent, so no medicine. It’s about Agnes needing no help versus needing the medicine and continued vent support.

So, we’ll see what happens in the next 24 hours. If Agnes keeps doing fine, she will move out of the PICU and back up to the floor, and she will be discharged at some point from the floor. If she keeps doing fine for the next day or two, I’m certain they will let us come home very soon since we won’t have to learn to use a ventilator and do a 24-hour care test. Agnes does need to get her feeds back to bolus rather than a continuous drip; that will take a day, maybe two days. And we will have to wait for the at-home nursing to get sorted, though hopefully we can have our previous nurses back. Agnes was approved for up to 12 hours of nursing a day, which will be a huge help! Thank you, Medicaid home care waiver! But other than the nursing, I don’t think we will have to wait for anything else before we come home.

Dare I look at the light at the end of the tunnel? Yes! I’m looking at it!

CPAP Plus Pressure Support

Agnes totally owned the switch to CPAP plus Pressure Support. There really wasn’t much difference for her compared to the previous setting, since she was breathing a lot on her own already. The big change is now the ventilator is not supplying even 5 breaths per minute for Agnes; she has ask for every breath she takes. The machine still supplies the base pressure (the CPAP part), and when Agnes takes a breath, the machine pressure increases a bit to support the breath (the pressure support part). There is a back up ready, if Agnes stops breathing for 20 seconds, the machine will give a few breaths. So far this has not happened, except Agnes can trigger this back up response by holding her breath in a fit of pique–which she did do today, just not for a full 20 seconds.

There were a couple good trials for Agnes after the switch, too. They did an echocardiogram which didn’t appear to be upsetting for Agnes, just long. She was awake for the whole thing, but as far as I could tell she was not agitated. They also “pricked” her heel for a blood gas test. They call it a “prick” but really it’s a strong jab followed by at least 7 to 10 minutes of squeezing, prodding, and poking with a thin little needlelike collection tube. As far as I could tell, Agnes was extremely agitated and she hated this whole experience. Her ire did cause the monitor to alarm because it looked like she was dying, but when she kicks a lot the sensor doesn’t pick up well, so I’m not sure how close to dying she actually got. I do know that she recovered from the blood draw very quickly after the lab person left. So, all in all, a good trial for the CPAP/pressure support.

I think the next step will be to take away the pressure support and leave plain old CPAP. Then take that away, and Agnes will be on her own! I’m pretty excited! I think Agnes will be able to come off the machine entirely, but it’s a big change to take away the pressure support, and another big change to take away the CPAP. It’s possible Agnes will not respond as readily as she has been; the next couple changes are much more dramatic than what we have been weaning. Here’s hoping!

No word on the echocardiogram yet, but hopefully tomorrow we will know whether they plan to treat Agnes’ pulmonary hypertension with medicine or not.

Agnes also had a blood draw this afternoon to send away for a genetic microarray test. This test will tell us which genes are involved in Agnes’ special extra chromosome material. That may give us clues about her future. This test takes a while: at least a few weeks and possibly longer. Our nurse told us she knew of one kid who submitted blood samples and had tests done for a year before they got answers. I don’t think the results of the test will make a huge difference in Agnes’ day-to-day care, so any information we can learn will be just for knowledge and insight.

So that’s what’s going on. If Agnes can manage to stick without the ventilator, we should be home in two weeks or so. That would be nice!

What I Wore Sunday: October 20

Hi there. Linking up with Fine Linen and Purple.

Stephen noticed we were taking pictures

He wants to be in the picture.

He wants to make sure you noticed Mommy’s boots.

My outfit today is a great example of “use what you have.”

The shirt is a Motherhood Maternity shirt I bought when pregnant with Agnes. I actually don’t recommend this shirt because the fabric is very thin, and the shirt shrank a lot in the wash. You would have to air dry, I think, because even low heat in the dryer was too much. The price was too much for that kind of shirt.

The sweater vest thingy was in a bag of free clothes someone gave me when pregnant with Stephen. I love to layer this over long sleeves in the fall and winter. It’s just enough of a layer to get through those days that aren’t quite cold, but still rather chilly.

The skirt is seriously something I have had in my closet for more than 10 years. It still fits (yay, stretchy!) and more miraculously, the elastic waistband is not trashed despite over 10 years of normal wear and wash. It is Merona from Target, so I guess I highly recommend. I believe I wore this skirt as my concert black and white in high school choir.

Also, today I got to wear my pretty new Clarks boots. Yay for fall!

Another Sunday without Agnes at church. She is doing much better the past couple days, so I did have a positive attitude when folks were like, “where’s your baby?” I also had the freedom to sing with the choir today and it was good that I was there. The lady who leads the choir is on vacation this week and next week! Anna let me start off the troparion and it went pretty well. The scary part was when one of the other ladies who kind of leads the sopranos had to run home in the middle of the liturgy! I’m still not totally comfortable with the music of the liturgy, so I was pretty nervous until she came back. We did pretty well, all things considered, and like I said it was good that I was there!

As for the rest of my day, it was pretty good. We hung out with Agnes for a while and Stephen played with all the PICU nurses. He’s a little charmer, and all the nurses and doctors think he is just adorable. Agnes’ nurse today said, “He is the cutest; I could just eat him up.” You better watch out, Stephen. I also spent a long time in the kitchen with Stephen, cooking a pot of chili for dinner with a pan of cornbread on the side. Stephen helped by standing on his little step stool and commenting that the pots are “hot.” He also stuck stickers to the kitchen floor. I asked him what he wanted for dinner because I knew he didn’t want chili, and his answer was, “macaroni.” I asked “macaroni with cheese, or with tomato sauce?” and he said, “cheese tomato sauce!” That’s just because he repeats everything. He doesn’t really understand about answering questions 100% of the time. So I assumed he meant like the blue box macaroni, and he was pretty happy to eat that for dinner. So, I cooked a pot of chili, a pan of cornbread, and a box of macaroni and cheese for myself and Stephen. Good thing we like leftovers up in here.

Anyway, thanks for reading, and if you’re in the mood for a real Agnes update, check in again tomorrow because her care is really going down tomorrow. She’s getting an echocardiogram and they may switch the ventilator to the CPAP plus pressure support setting tomorrow. Wooo. Big day. In the meantime, go here to see a great picture of me stuffed into the backseat of our tiny car with two car seats and an oxygen tank.

Check out Fine Linen and Purple for more Sunday fashions.

7 Quick Takes: October 18

Linking up with Jen at Conversion Diary. Like every Friday.

1. Stephen is on a dinner-time hunger strike where he won’t eat the meal I serve. Then he won’t eat the other meal I serve him, trying to get him to eat. Then he won’t eat the meal I serve him again because I wrapped up the plate and put it in the fridge. All he wants is “cheeros” and nothing else will do. It’s frustrating, especially when others in the house opt for “cheeros” for their own dinner on leftover night. How will I ever get Stephen to eat the dinner I prepare for him if other people get to eat breakfast cereal for dinner? It’s a struggle. I’m hoping it’s a phase for Stephen. He used to be such a good eater…he ate anything I put down for him. Except kale. He’s never been a fan of kale. I try to model good eating habits and a variety of foods for him, but he does not look only to me to learn behaviors. There are three other adults in the house he observes as well.

2. We’ve had some response to our support page for Agnes. There have been a lot of people looking at the page, and so far 6 donations. We are almost 4 percent to our goal! We are so thankful and appreciative for those who have offered a gift to help us take care of Agnes and all her needs.

3. I want to start a small cookie baking project to help support my family. I will probably start an Etsy page since this looks like the easiest and most legitimate way to sell homemade goods on a small scale. I have one major question about this venture, though: how do I ship the goods? Should I freeze the cookies and ship them frozen so they arrive frozen? Should I ship them fresh with ample padding? Should I freeze them and ship them frozen so they arrive thawed? I do not know. I fear I may have to purchase some cookies from a number of Etsy vendors in the name of Research. Yes.

4. Agnes continues to be stable. They turned down the rate of the ventilator from 20 to 15 and she apparently did not notice, which is good. The plan is to reduce the rate by five each day, until all Agnes has is CPAP with pressure support, then take away the pressure support and leave Agnes with CPAP, then take away the CPAP. We’ll see how it goes.

5. I’ve been hearing a number of negative comments about people who rely on government assistance programs like EBT and Medicaid. I would just like to remind everyone that while there are of course many who abuse these programs, there are also many who genuinely need the support to make ends meet. I myself use EBT and I am so grateful. If I did not have EBT, we would spend half our monthly income on food, easily, which does not leave much left over for gasoline, bills, incidental expenses, clothing, church donations, and “emergency.” Because, you know if you only have $600 to divvy up after food, there are going to be emergencies. That’s the rules. Anyway, things like this are mildly offensive to me, and also pathetically funny that there are people who believe this kind of stuff, which it is becoming more and more clear to me: there are. lots. If such a thing can be judged by quantifying the related Facebook memes.

And my family is on Medicaid. Oh my gosh, if we did not have this, we would probably spend 1000% (one thousand percent) or more of our monthly income on medical bills.

6. It’s starting to look and feel like Fall around here! The leaves are turning colors, it’s been chilly and crisp. I love it. The heat has been on in the house, and I’ve had to wipe off the windshield in the morning.

7. I’ve got a cough that just won’t quit, and I wasn’t too worried because I have no other symptoms besides a cough that is sometimes dry, sometimes productive. Except now I’ve had it for more than a week, and the coughs really take a lot out of me. I hope I’m not infectious because my daughter has Chronic Respiratory Failure…And I don’t want to go to the doctor because I’m not sure my Medicaid is working right now since Agnes just got transferred off the MCO and back to straight Medicaid, and apparently county employees are so overworked that they accidentally transfer around whole families when one member moves, even though it seems like it would be more work to transfer multiple people…whatever. I have a dreaded phone call to make, I can see. And I’m not encouraged because apparently this happens all the time, and some ladies I’ve talked to have trouble convincing the office that the problem even exists. Sigh. Wish me luck.

Read more takes at Jen’s blog.