Laughing, Weeping, Living

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

What I Wore Sunday September 22

Linking up with Fine Linen and Purple, a bit on the late side, but hey the link-up is still live until tomorrow morning so why not slip in just ahead of the deadline?

100_1807Quick run down of the fam’s duds:

Me: dress from a thrift store in Billings, MT. Sweater from Target years ago. Boots are my new Clarks; ain’t they purty?

Stephen: the finest that thrift stores have to offer.

Agnes: sleeper second-hand from Cheering on Charlie. Puppy toy and car seat second-hand from Stephen.

Jeremy: I don’t know, but he always looks super sharp for church.

We got my dad to take a group photo. Agnes is openly crying. Stephen looks angry as all get-out, and Jeremy prodded me in the shoulder and commanded me to smile an instant before my dad snapped the picture. That’s because Liturgy was kind of horribly for us this week. Agnes was mad and she needed suctioning during Liturgy so Jeremy took two trips to get her and all her stuff into the cry room, and he was gone for a long time. While he was gone Stephen decided to make an icky diaper so I had to leave too. The rest of the time Stephen was a pill and kept trying to get us to leave the sanctuary and “go downstairs.” He got whiny and cried a little and refused any sort of distraction. So I have no idea what the readings were about and I couldn’t tell you anything about the priest’s homily. We didn’t stay for coffee afterwards because the last thing I wanted to do was “go downstairs” and reward Stephen’s begging, plus we were worried about Agnes. She didn’t look that great.

Turns out that was because she’s a bit sick. Yep, baby has a minor infection in her trach or airway or something. She is coughing a lot, producing lots of thick white secretions that need suctioned, and she requires more O2. I was convinced she would go back to the hospital since she’s been home for two weeks today and that was her previous record. Well, she’s still at home at least. We’re giving an additional antibiotic and cranking up the O2. Last night we couldn’t turn the O2 high enough for Agnes to wear the mist collar, so we had to put the HME back on, which for some reason, she seems to tolerate better. The mist collar is important, though, because it helps to thin out those thick secretions that can clog up the trach if you don’t keep up with suctioning! We did actually change her trach tube this morning to see if that would help, and it did. She still is struggling with the oxygen, and she is working to breathe a little more, and being little miss cranky-pants. But the pediatrician didn’t see anything urgently concerning yesterday when we took Agnes in, so hopefully this is something that Agnes can recover from at home.

The past few days have been really bad for me. I am soclose to the end of my rope, and I feel really overwhelmed. Jeremy has been working every night and my dad was away on a business trip, so the troops have been thin around here. Not to mention our nurse didn’t come on Sunday night so we took turns covering the time. It’s good for you, my dear readers, that I did not have time to write any blog posts. You don’t need an earful of my fatalistic depressive crazy rants. Hopefully things start looking brighter in the next couple days. Because my weariness is interfering with my ability to care for my children.

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What I Wore Sunday: September 15

Sunday 9-15-13 boot Sunday 9-15-13Today we had some positively Autumnal weather. It was nice and cool and crisp, perfect for the first time taking Agnes to church since coming home. Liturgy was earlier than normal because our priest is visiting family in Ukraine for a month, so we have a substitute priest who also takes care of his own parish in Solon. I bet he probably had to say Liturgy here, then scoot up to his own parish in time for Liturgy there. I am grateful he came; I like going to Liturgy, and he was a really good singer!

So, we had to get up and out the door in record time this morning, taking Agnes and all her gear, and Stephen, and we all had to look nice too! I took the opportunity to wear some more fall-appropriate clothes, including my new pair of boots!

The boots are Clarks, Ingalls Delaware style, in “grey” which is actually taupe. I purchased them through Amazon using a ton of change I found lying around the house. We took the change to a coinstar machine that has a feature where they don’t charge a service fee if you convert the coins to a gift card. So we used the coins to get an Amazon gift card, which I then used to subsidize the purchase of these super nice leather boots. They’re a real brand, and high quality, and I would not be able to justify their purchase if I didn’t have the “free” money to help! I wear boots almost exclusively in the winter with my skirts, so I needed to get a style that would be comfortable and attractive for everyday wear. I’m pleased with them so far! I think they will really hold up to my abuse!

The skirt is from a bag of clothes someone gifted to me when I was pregnant with Stephen. The shirt is Motherhood Maternity. I opted not to wear a veil today because I wasn’t sure what would shake down with Agnes and I didn’t want to worry about my veil getting in the way if I needed to emergently replace a trach tube or something. Plus, this week I got my hair cut for the first time in a year. I didn’t intend to go that long, but it was hard for me to find a time to do it! The stylist took five inches off the bottom, then used thinning shears to remove some the extreme thickness. I really like the look and feel of my new ‘do. I think I will always ask for thinning from now on!

Agnes did a great job at church. We got there a little early so we could set up her tube feeding before Liturgy started, and she pretty much snoozed through most of the liturgy. She did start fussing more towards the end, so I got her out of her seat to hold her and she calmed immediately. We lugged her travel bag, pulse-oximeter, oxygen tank, and feeding pump. We took up an entire pew! After Liturgy we went down to the basement for coffee and everyone was excited to see her back. They exclaimed over how big she is compared to the last time we took her to church a month ago. They said she is cute. We talked with a lady whose younger son was born with some issues similar to Agnes, and he is now a more or less healthy nine year old (I think he’s nine). He is an altar server and very sweet. He played with Stephen the whole time we were talking to his mom. We are so blessed by this church community. Everyone is so supportive, and no one seems freaked out by our special baby. A few of the ladies had the opportunity to hold Agnes, and she loved it.

Agnes has definitely learned that if she fusses and cries, someone will pick her up and snuggle. She adores being held, and pitches a royal hissy fit in her crib until someones comes to attend to her demands. It’s a good thing she is an adorable little miracle baby!

Linking up with Fine Linen and Purple. Go check it out!

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Our New “Normal”

Ever since we found out Agnes would be a special needs child, many people reassure us by saying that it won’t be long before we learn what our “new normal” will be for our family. Others offer support and sympathy by saying these difficult days will soon be past and we will be comfortable in a manageable routine. Still others reassure us by saying we will soon become “pros” at Agnes’ care, or that the tasks aren’t actually that difficult to master, or that Agnes won’t mind if we make a mistake.

I truly appreciate all the support everyone gives me, and I do not feel like I am left alone to bear the trials of having a special needs, medically fragile baby.

However, it is fairly certain that Agnes will always be a fragile child with many needs and special care. These days are difficult not only because her needs are new to us, but because her needs are many and they are complicated. It is possible that a mistake could seriously harm her. I don’t think it’s likely a mistake would kill her, but grave harm is possible. Only yesterday when I changed her trach tube in the hospital, I forgot to remove the obturator immediately when the new tube was in. I did remember a few seconds later, but a few more seconds could have caused serious respiratory distress that could have ended in someone performing CPR. Serious. Agnes has a safe suction depth for her trach that is measured just to the tip of the tube. If we accidentally suction deeper by misreading the “6” and the “8” or something, we could gouge the tissue of her trachea which would cause bleeding and eventual scarring. That could harm her airway permanently and possibly prevent her from ever being able to breathe without a trach. Serious. Agnes is on oxygen at home and the tube connections are not very good. The end of the tube is too tight to really fit around the connector on the machine and sometimes the tube pops off. If we are not paying attention, the connection could fail and Agnes would not get enough oxygen. If that goes on for too long, her organs and especially her brain would be damaged from lack of oxygen. Serious.

This is why we spent two weeks training with hospital staff, completed supervised hours of care, and took a CPR class. Agnes’ needs are many and complicated. There isn’t much room for error.

So, I do believe that we will discover what the “new normal” is for our family. I do believe that we will soon become “pros” at Agnes’ special care. But I also know that we will always have to be vigilant against error and inattention. Our “new normal” is going to be difficult always, even when it no longer new to us.

I am glad to know so many people are supporting us and offering encouragement and especially prayers! Thank you all sincerely. I just wanted to let you know in turn that you don’t have to offer platitudes about how this hard time will become a distant memory. It won’t. What you can say instead to offer support is

“You and your family are in our prayers.”

“I know it must be hard, but you are doing a good job.”

“We are here to help you. Let us know if you need anything.”

“I know you must feel like you are failing, but you’re not. You are doing fine.”

I recognize that we won’t always feel so frantic and inexperienced, but when it gets easier, it will only get a little easier. But “a little” will be enough to take Agnes’ care from overwhelming to manageable.

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Nose Dispenser

brrrrrrrrrrrrrrrrrrr [that’s a drumroll, btw]

Agnes is coming home tomorrow!

Unless, of course, something goes horribly wrong. But that is not likely. Jeremy and I have fulfilled our caregiver trials, and my parents, too. The home care nursing has been totally lined up for all seven days of the week, and all Agnes’ equipment and supplies are in the house. Supplies that include…nose dispensers. The thing about tracheostomies is, they are essentially an open tube that leads directly into a person’s airway. People with normally functioning airways breathe through the nose and mouth, which serves to humidify and warm the air before it gets to the lungs. People with trachs bypass the nose and mouth, so the air that goes through the trach tube is chilly, dry room air. That is, unless there is an HME on the end of the trach tube. That is a Humidity and Moisture Exchanger, also known as an artificial nose. The HME traps moisture from a person’s own exhalations, then the new air passes through the humidified filter, thus supplying moisture to the new inhalation. It’s a pretty neat invention, and the noses come packaged in a box with a tear-away flap like you see on a box of tissues or on a box of pop cans. The HME’s come packaged in a nose dispenser. Hee. Hee hee.

100_1764

100_1766It will be a relief to have Agnes at home, though I confess I feel kind of numb about the news. It’s hard for me to feel strongly about Agnes news anymore, whether the appropriate reaction is excited, angry, sad, or whatever. There is just so much thrown at us, and so quickly, that I’ve become exhausted by extreme emotions. Plus, Agnes’ condition changes literally from hour to hour some days, so there is no point in investing in an emotion. Anyway, I guess what I’m trying to say is I am cautious and reservedly excited about Agnes’ homecoming tomorrow. And, I’ll believe it when I see her in bed at home. And, I’m well aware that it’s not impossible that something will come up to delay her homecoming. And, I’m afraid to feel excited because that will open up a place for me to also feel extremely nervousscaredterrified-paralyzedsaaaaaaaaaagh.

So tonight I will be organizing Agnes’ equipment and gear, and making sure I know where all her stuff is stored, and putting sheets on her bed, and cleaning house a little. Part of my task will be to weed through Agnes’ clothes and pull out the suits that are now too small, and the suits with zippers. Since I need access to Agnes’ g-tube every three hours, zippers are not practical unless I feel like leaving Agnes half-undressed for each feeding. I do want to give a shout out to Cheering on Charlie. I just got your package today. Thank you again for sending Agnes some snappy baby clothes!

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