Laughing, Weeping, Living

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

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.


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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Agnes had her shunt placement surgery this morning and everything went well. The neurosurgeon said there were no problems with her surgery, and the procedure took exactly as much time as they told us it would when we got briefed in pre-op.

Yesterday when a pre-op nurse called with some instructions, I told her that Agnes had come down with a wet cough and needed more frequent suctioning. The nurse told me to take Agnes to the pediatrician because surgery was a no-go if she has an infection. So I did and it was not fun taking Agnes and Stephen to the doctor’s office by myself, but we did it. It was good that I went because the doctor gave Agnes a green light for surgery, provided she did not become any sicker overnight. She didn’t and we went to the hospital.

After the surgery went ahead, I felt pretty relaxed. The neurosurgeon’s confident remarks about how “easy” a shunt placement is encouraged me.

Agnes went up to the same hospital floor she was on before, so we recognized a bunch of the nurses. They all remembered Agnes from before. Agnes has been rather touchy all day, crying off and on and having borderline O2 sats. This is partly because her pulse-oximeter probe keeps lying about Agnes’ numbers, but this is usual behavior for a pulse-oximeter probe. The lying sons-of-guns. Agnes tolerated pedialyte and half-strength feeds over the afternoon, but when the nurse started full-strength feeds, Agnes started puking a lot.

Apparently this is not unexpected. Since Agnes has been used to high pressure in her head, now that the shunt is draining out the fluid and the pressure is normalizing, she is suffering “low pressure headaches.” She needs to get used to the new pressure levels in her head, which will take a couple days. In the meantime she will get half-strength feeds and anti-nausea meds. Of course it doesn’t help that she has to lay absolutely flat for the first 24 hours after surgery so the shunt doesn’t drain too much too quickly. Agnes suffers from reflux and we always keep the head of her bed elevated, so she is not used to being flat. I’m sure that bugs her too, in addition to all the pokes and wires and tubes she acquired for her stay.

I’m hopeful that she will start to improve tomorrow.

Oh, and the sutures on her head are really ugly! I know they are fresh, but holy cow. A huge 3-D black line of ick with metal staples that look just like the kind you buy at the office supply store. There is a suture in her abdomen too from where they went in to poke the shunt end into her belly. On the plus side, the line of catheter under her skin is hardly noticeable. I can’t even see it, or feel it when I lightly touch. The scars will heal up, and once Agnes gets hair on that side of her head, you will hardly be able to tell she has a shunt.

I expect her to stay in the hospital for a couple nights. Here’s hoping this doesn’t turn into another long visit!


Sleeping Sideways

As the night nurse says, “she has butter in her drawers!” I don’t even know how she manages to slip sideways like this, but she does quite frequently.

And before you start counseling me about all the blankets and things in Agnes’ bed, I know that’s not generally allowed, but Agnes is constantly monitored by a machine that beeps in a most annoying fashion if her blood-oxygen level dips below 92%. So, no SIDS for my baby girl. Plus, she almost always has someone sitting right in the room with her.

Now, for the cute baby pictures!




She likes to stick a foot through the bars.


One little hand pokes out.

Who you lookin' at? I'm not doin' nuffin' wrong.

Who you lookin’ at? I’m not doin’ nuffin’ wrong.


7 Quick Takes: September 6

Linking up with Jen at Conversion Diary.

Sleeping like a baby.

1. First thing’s first: I have some news about Agnes. Yesterday morning we met a representative from Aeratech, the medical supply company that will be providing all our equipment in the home. While she was showing us the gear, Stephen became antsy, so Jeremy picked him up and helped him turn on the mobile that hangs on Agnes’ crib. When the Aeratech rep left about 5 minutes later, I went to Agnes to stroke her hair and talk baby to her, and I noticed that the hose that supplies warm mist and oxygen to her trach was disconnected. That means she was not getting any oxygen apart from what is in plain room air. I was shocked. I looked at Agnes; she looked great. I looked at the monitor; it showed she was at 98% oxygen saturation. I decided not to reconnect the tube and I went to get her nurse. I showed her nurse what had happened and she was shocked. Only the day before, Agnes had clearly needed the extra oxygen. Her sats would drop mere moments after being disconnected. The doctor agreed to wean down the oxygen she is receiving, and this time it looks like it is going to stick. We were able to wean her down further this afternoon. She is getting 1/4 liter, which doesn’t mean too much to me aside from I know it is less than what she was getting yesterday: 2 liters. Maybe she won’t need oxygen at home after all. Praying. Praying.

2. Stephen is starting to tell us what he wants using actual words. It’s cute. He picked up his flashcards and said, “Cards. Cards.” Then he gave the cards to me, pointed at the sofa and said, “Couch.” Then he climbed up on the couch, clearly waiting for me to sit down with him and play flashcards. Also, I do believe he was asking for a diaper change this evening. And earlier this week when we sat down to have a morning cup of milk, he asked for a blanket. When I got one out of the storage ottoman and threw it over our laps, he pulled it up and said, “feel better.” Aww, doesn’t that make you go “awww?”

3. Another cute Stephen story, because who doesn’t like cute stories about toddlers? Today I was on the computer and Stephen was doing who knows what, but he wandered into the office with a cat puppet on each hand, holding his sippy cup. “Empty,” he said, and tried to suck out some juice. The cats. They were holding his sippy cup. One on each hand. Oh my word.

4. I have been going to the gym several times a week, first thing in the morning before anyone else is awake. But I tell you what, the past two days when my alarm rings at 5:50am, I turned it off and rolled over. I’m way too exhausted to support an early morning gym habit. Too bad that’s the only time I can realistically go. We go to the hospital in the morning, then Jeremy works in the evening, then I don’t want to exercise right before bed, plus my parent’s have been going to the hospital in the evening to train which means I have to stay home with Stephen. Will it be easier to go to the gym when Agnes comes home? Probably not, but we’ll see. Jeremy will start school in a couple weeks plus work on the side to bring in the moolah, so I’ll be at home with the kiddos most of the time.

5. Speaking of the gym, I haven’t seen many tangible results of my new exercise regime. Hahaha! “Regime.” whew, that’s a good one. Anyway, pretty much the main result I’ve noticed is a workout of a similar intensity is easier for me to do than it was when I first started. That’s good. I haven’t really lost any weight, and my mood improvement is hard to notice most days, but I can tell my cardiovascular system and main muscle groups are the tiniest bit fitter. So that’s a start.

6. Have you ever tried oat groats? Also known as oat berries? They are the whole grain of oat with only the outermost husk removed. This is what oats look like before you chop them up (steel cut oats), or run them through roller presses (rolled oats). Whole grains = better for you! I bought some at the farmers’ market a while ago and made crock pot oatmeal a couple times. It’s good. I don’t remember how I did it the first time. Last night’s recipe is superior anyway. I mixed 1 1/2 cup oat groats with 6 1/2 cup liquids (water and/or milk), plus 1/2 cup brown sugar, a dribble of vanilla extract, and a few hefty dashes of cinnamon. Cook overnight on low. Makes at least 6 servings. This morning the oats were a lot softer than when I made it the first time. I liked it better today, and Stephen liked it today as well. He didn’t like it when I made the oatmeal a couple months ago with a different recipe. I recommend. I bet this oatmeal would also be delicious with some raisins or other chopped fruit stirred in at the end.

7. Have you ever seen the movie Hot Fuzz? Oh my gosh, it is the best. It’s basically a parody of an action buddy cop flick, but with really good acting, dialogue, compelling characters and plot, and a surprise twist or two that are actually surprising. I can’t even tell you how much I laughed the other night when we watched it. There is some bloody violence (hey, it’s a murder mystery) and coarse language, but I wouldn’t say the language is gratuitous. Plus, Bill Nighy has a minor supporting role!

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Surgery, Baby

It has finally been scheduled. Gosh, it sure is hard to pin down the ENT surgeon. He must be really busy. But finally, we have the firm decision: Agnes is going to surgery tomorrow (Wednesday) at 2:15pm Eastern Time. She is getting a g-tube first, then the tracheostomy, all under the same anesthesia during the same trip to the OR.

This surgery will be quite involved because the two procedures are happing in the same visit. I’m kind of nervous because she has to be intubated for the g-tube surgery and that was extremely difficult to do the first time. After the general surgeon is done with the g-tube, the ENT surgeon will take over and do the trach. He came by to talk to me about the procedure this morning, and it doesn’t sound too bad. Essentially, they just make an incision on Agnes’ throat right on top of her airway, then slip out the invasive tube as they slip in the trach. A few sutures around the incision site and done.

The care of a kid with a trach is something else entirely. Jeremy and I have to learn how to:

  • change the ties that hold the trach in place,
  • suction the tube,
  • replace the tube,
  • do CPR with and without a bag and mask,
  • trouble-shoot problems that arise.

We also have to:

  • Make sure someone is awake and watching Agnes 24 hours a day,
  • which includes at night and in the car,
  • and be able to leap into action the very second her pulse-oximeter alarm starts to ring.

Apparently we can expect Agnes to be hospitalized for at least two weeks following the surgery, not because she will be healing, but because it takes that long for us caregivers to pass the training and organize home care needs! Jeremy and I will have to stay in Agnes’ hospital unit for a 12-hour test where we provide all her care. If a nurse has to jump in and help, we fail and have to try again during another 12-hour stay.

…And all that is just for the trach part of Agnes’ dealio! We still haven’t heard much about the g-tube at all, aside from the opinion that it is easier than the ng-tube we have been doing. I don’t believe it because the ng isn’t surgical, and if it falls out, so what? The g-tube is a surgically installed tube directly into Agnes’ stomach, and if it falls out we have to quick! stick something back in because the hole will start to close. Then I think we have to come in to the hospital to have it fixed. So, I don’t believe it’s easier, and I won’t believe it until I’ve cared for Agnes’ g-tube for a couple days I see for myself what it’s like.

Luckily, since Agnes is getting all this stuff, we get to have nursing support at home. We will have a nurse come to our house every night to be with Agnes for eight hours overnight. Unless the nurse isn’t available, or gets sick, or weather prohibits her from coming. Then Jeremy and I have to cover the night too. Thank God we do live with my parents; they have agreed to take the trach training as well. Hopefully once they see what’s involved, they won’t get overwhelmed and change their minds!

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