Laughing, Weeping, Living

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

The Reasons Why

I just realized today that my last several posts have been about everything except my infant in the hospital. Agnes has been in the hospital this time for just over three weeks, and she isn’t going to come home until early next week. We are back in the routine we established when Agnes was in the NICU: wake up and get ready for the day; go to the hospital; stay as long as we can until Stephen gets bored and loses it; come home for the afternoon; putz around the house; maybe go back to see Agnes after Stephen goes to bed; sleep; repeat.

Actually, for the past week, I haven’t even gone back at night to see Agnes for a couple hours after Stephen goes down for the night. I just can’t. I’m burnt out on hospital.

I’m sick of the hospital. I don’t remember what life was like when we didn’t have to go to the hospital every day. I don’t remember what it was like to have Agnes at home. Every time we drive somewhere, Stephen thinks we are going to visit “baby Agnes.” He has a routine when we arrive at the hospital. He pushes the button to open the automatic doors from the parking deck into the hospital building. Then he runs over the pedestrian bridge across the street. Then he has to touch three things: the giant rubber ducky art made out of gum balls, the 3-D timeline of Children’s Hospital history, and the portraits of the “doggie brigade” therapy dogs. Then he says, “horse, horse,” when we walk up to the horse sculpture. Then he gets a sticker at the information desk. Then we go up to Agnes’ room.

I don’t want my son to have a routine about going to the hospital.

Another thing that is happening to me with Agnes being in the hospital is I don’t feel connected to her anymore. She doesn’t feel like my baby, and I don’t ache to see her and hold her anymore. It gets less and less hard for me to leave her room every day. Of course I’m concerned about her, and I want her to come home, but I feel really detached from her on an emotional level. I do her care when we are with her, and I want her to be comfortable. I get irritated on her behalf when I can see that she is uncomfortable because of a dirty diaper, or her swaddle is tangled, or she has slipped into a strange position in bed. I want to fix those things. But I don’t feel a connection to Agnes like what I think of as a “normal” mother-baby connection.

It’s very hard on my family to have Agnes in the hospital and being medically fragile. I think the stress of that situation has just finally worn me down. I can’t think about it, and the more time I spend at the hospital, the more worn down I feel. I’m starting to resort to coping mechanisms more. I watch stupid T.V. programs in the evening and I let Stephen watch more T.V. during the day. I need to drink multiple cups of coffee to keep going during the day. I need to take naps more often than I used to. Instead of one beer with dinner, now I sometimes have a drink with dinner and another one later in the evening.

Finally, another reason why I haven’t been writing about Agnes is nothing is really happening. She is stable and her condition is pretty much unchanging. The amount of oxygen she gets changes every time we go there, but she usually gets around 30%. Her trach and g-tube sites look good and healed. She has the most horrible diaper rash I have ever seen ever. The doctor even prescribed a cream they use in the burn unit to heal peeling, excoriated burn wounds. Maybe her butt is looking better today. Maybe. But other than the rash, she is doing fine. Our caregiver training is nearly done. We all need to take a CPR class on Saturday, then we all get to do our 12 hour stays. My parents will do theirs 6 hours plus 6 hours over the weekend, and Jeremy and I will do 12 hours on Monday. Tuesday is Agnes’ tentative discharge date, depending on whether we can get the last two shifts covered for nursing assistance.

I will be relieved to have Agnes home. Maybe when she is home I will start to feel more connected and caring toward her again. It will be nice to not go to the hospital every day.

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What I Wore Sunday: September 1

Linking up with Fine Linen and Purple.

Happy New Year! Today in the Eastern Catholic Rite, we celebrate the beginning of the church year. I’m not sure why September 1 is the beginning of the new year; in the Roman Rite the first Sunday of Advent marks the beginning of the church year. It is handy that the date is always the same. Though I wonder what happens when September 1 is not on a Sunday? Is it a big deal? We did sing a special kontakion for the feast day, but everything else was for a regular Sunday. I sang in the choir again this week and it was fun. There was a visiting priest celebrating Divine Liturgy with Fr. Sal, and no offense to Fr. Sal, but the visiting priest was a really good singer! I enjoyed singing the responses even more than usual. I guess the visitor was the parish’s former pastor who had moved to a different parish in Cleveland. I really like Fr. Sal, but I wish I had known this other guy, too. His wife sang with the choir today as well, and she was just lovely. She is going to pray for Agnes!

Sunday 9-1-13For church, I decided to wear this dress I found in an Albuquerque thrift store. I really like the design and the colors, and the dress is cool without being too revealing. I wore my long Spanish mantilla with it. And I probably don’t even need to tell you what shoes I chose. Okay, fine, I will. My black Minnetonka Moccasins! Seriously, these shoes are the greatest. They conform to my feet, they don’t slip off my heels when I walk, they are nice enough to wear with dressy clothes, and casual to wear with jeans and t-shirts. I’ve worn them to church, to the hospital, to clean the bathroom. I actually wouldn’t recommend that, but in my defense, I hadn’t planned to scour the shower stall with Ajax when I went in there wearing my moccasins. I got carried away. But, good news: a damp towel was all I needed to wipe the Ajax spots off the moccasins and they’re good as new. And finally, I’ve owned these for just over a year, and they show no sign of wearing out, bursting a seam, splitting away from the sole, or discoloration. And my pictures week after week prove that I wear these shoes all the freakin’ time. Okay, I’m done raving. If you have the opportunity to purchase a pair, I recommend. That’s all.

Today my family’s fun event was visiting the hospital! Whoo! We completed some more parent education about caring for our trach baby, Agnes. I had my turn to change Agnes’ trach tube and do the care of her stoma (the hole in her neck) and change the ties. Jeremy and I also practiced listening to Agnes’ breath sounds and suctioning again. We rounded that out with some brief instruction regarding Agnes’ g-tube and the feeding pump. We are almost “checked off” on all the required pieces. We just need to check off on g-tube care, feeding pump, bagging with the bag (yes, nurses actually say this), and the CPR class. Then we can do our 12-hour stay. Then and only then can Agnes come home! She will probably come home in about 9 days. Maybe Tuesday September 10. Here’s hoping.

Toodle on over to FLAP for more link ups.

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7 Quick Takes: August 30

Linking up with Jen at Conversion Diary.

1. Jeremy and I had the opportunity to do some hands-on trach care with Agnes this morning. The respiratory therapist came in and tried to explain every single thing we would ever need to know, then showed us how to suction and change the ties. We wanted to jump right in because doing it is the best way to learn. The therapist coached us, it took a long time, Agnes got so mad she finally gave up fighting, then she puked. Then the therapist pretty much told us that next time we should let a therapist work with one of us at a time because we were obviously very scared and she could sense my frustration and she will chart that we went over the care but we still have a lot of work to do. Then she wanted to explain even more stuff to us! We worked for two hours and Stephen was starting to be a handful in the background and it was lunch time. We were finally able to get rid of the therapist, but we’re in for more fun tomorrow morning!

2. I don’t mean to criticize hospital staff. It was just a ton of information presented somewhat haphazardly. The therapist today came in asking us what we had discussed with the therapist who trained us yesterday. I guess they are transitioning the parent education from some people to different people. Whatever, that’s no excuse for disorganization, especially when it comes to serious medical care for children. They need a curriculum that is in a specific order, so when a new teacher comes they can see from the report that we only covered chapters 1 and 2. Or maybe they’re “modules.” That’s a trendy name for medical care education.

3. Also we are sick. of. the. cafeteria. Like, I would almost rather not eat lunch than eat cafeteria food. Yesterday we had had enough so we walked to “a thai place” on Main Street. I had vaguely remembered this place from driving around downtown, so I asked Agnes’ nurse, “Isn’t there a Thai place on Main Street?” She said yes, but neither of us could remember exactly where. We thought we knew, so Jeremy, Stephen, and I set out. It was one of those things where you walk for a while, don’t see the destination, finally try to look it up on Google maps and discover you’ve walked a 2-year 10 minutes in the wrong direction, with the noonday sun beating down on his exposed, and now extremely sweaty head. We did finally find the place, and it was so totally worth the extra hoofing. Stephen didn’t like it, but Jeremy and I thought it was divine. Then it only took about 5 minutes to walk back to the hospital because it’s actually very close. Yay.

4. I must feel like eating Asian food because I made Indian food at home for dinner. Lentil dal over rice, with an Indian spiced cabbage side dish. It was delicious and light, and vegetarian for Friday. Stephen even ate some. I was so proud of him. I only gave him a drizzle of dal on the rice and covered it with yogurt, but it was a major accomplishment for him to eat some. Then I rewarded him with melon.

5. Stephen is very cute. Have I told you the coffee cart story? Well even if I have: I asked Jeremy to take Stephen down to the coffee cart in the hospital lobby to buy a latte. We have a frequent customer card, and we were due to get a free drink! I turned to Stephen and said, “Do you want to go to the coffee cart and buy mommy a latte?” And he says, “Coffee Cart? Coffee Cart?” Then I guess Jeremy gave him the free drink card to carry and Stephen said “coffee cart, coffee cart” all the way down the hall, in the elevator, down the other hall, and through the lobby. Then when Jeremy tried to hand over the free drink card, Stephen got mad and wanted to hand it over himself. Precious.

6. Stephen likes to drink coffee. Iced coffee with cream, but still.

7. Speaking of coffee, I think it’s safe to say I have an addiction. I used to do it recreationally, but since I married Jeremy, he has led me down a path of addiction, and now I can’t stop. I used to have one cup a day, and now I drink up to three cups a day. I used to have to limit coffee after noon because the caffeine affected my sleep. No longer. The other night I drank a cup of coffee at 8pm and went to bed at 11 with no problems. At least, I drink only “good” coffee. If it tastes bad, I can resist. And if there is only powdered creamer available, I have no trouble saying no.

Head over to Jen’s page for more compelling takes.

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Trach Training

Jeremy and I started our parent training today. We each have to learn, and be able to demonstrate knowledge of complete tracheostomy care. We each have to be able to demonstrate that we can trouble shoot problems, identify signs of respiratory distress, change a trach and the ties, perform CPR with and without a bag, suction out secretions, and know what actions to take when different complications arise.

Today we learned about the different parts of a trach:

The obturator is the thin plastic plug that comes inside a fresh trach and keeps the trach stiff for placing in a patient. You take it out immediately once the trach in places because it totally fills up the airway.

The flange is the little pair of wings that sit against the patient’s throat on the outside of the neck. The flange has two little loops where you attach the ties on either side.

The ties are a velcro strip that you cut to size in the back, then attach to the trach flange with thin little velcro strips. The ties need to be changed daily. The whole trach itself needs to be changed monthly for maintenance, or more often if it falls out, gets pulled out, clogs, or otherwise fails.

The trach collar is not to be confused with the ties. It is easy to call the ties a collar, but the trach collar is actually a mask that tents over the opening of the trach and is connected to a source of warm, humidified air. It fastens around the patient’s neck with an elastic. The trach collar is for use when the patient is sleeping or napping. A more portable artificial nose is attached to the end of the trach when the patient is up and about. This contraption has a little filter on it that traps moisture from the patient’s own exhalations, then supplies that moisture to each inhalation. It’s pretty nifty.

Jeremy and I had the opportunity to practice changing trachs and ties on Nicky Boy Doll training doll. Nicky also has a g-tube, an I.V., and a place for practicing blood draws and injections. Poor Nicky. The only thing Nicky didn’t have was lungs that inflate when you give breaths with a bag. Oh well. We did get to practice giving breaths to Nicky with a bag, on the trach and with the face mask. When we suction Agnes’ trach, or get ready to do a bunch of care, if she gets into trouble we would have to use a bag to help her breathe. We can attach the bag to give breaths through the trach. If Agnes loses her trach and we are not able to put a new one in, we can cover her trach site and give breaths through her nose and mouth.

Jeremy and I also practiced suctioning Nicky Boy Doll’s trach. We get a tiny tube that connects to a suction machine. There is a right way to do it: hold the tube with both hands. One hand controls the suction on/off and the other hand controls the fine details of the operation. Grip the tube with your finger marking the “safe suction depth” and keep the suction off as you insert the tube into the trach. As you pull the suction tube out again, turn on the suction and twirl the tube from side to side to pick up as much ick as you can. Suctioning is actually kind of fun, but don’t tell Agnes I said so. I like to do it because it is a concrete way to make Agnes feel better. I can see and hear that I have removed something that was causing discomfort. Plus I kind of like that slurping sound. It’s funny.

Tomorrow Jeremy and I get to learn some more information, and maybe get a chance to practice care on Agnes. I’m a little nervous about changing her trach, but that’s why they do all this training in the hospital. There will be lots of professionals around in case we get in to trouble. I will try not to be anxious. Agnes is doing very well and seems to be much more comfortable with breathing now that she has the trach. They are weaning her down on oxygen and she is completely off the ventilator. She is on only about 25% oxygen; regular room air is 21%. She was moved out of the PICU this afternoon and taken up to the floor that cares for all the trach babies. She is on track to come home in 7 to 10 days.

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