Life with Chloe

WARNING: YOU ARE ABOUT TO ENTER A BLOG POST FILLED WTH RUNON SENTENCES AND ABSURDLY LONG PARAGRAPHS {Because it's written by Alan}

I can hardly believe that Chloe is going to be one year old at the end of the week. I'm sure that one of us will write a post this week reflecting back on the past year, but I wanted to write something to give you a glimpse of what our lives look like these days. I have had a couple of people this last week tell me that Jodie and I are going through something unimaginable, and I'm never really sure what to do with that. Honestly, I hesitate to write something like this because it might be taken as complaining, and nothing could be further from the truth. We have been incredibly blessed with Chloe, and though there are certainly struggles and life looks very different than it did a year ago, we wouldn't trade it for the world. Here's our attempt to let you look through our window and see what our world is like.

1. Nursing

There is a basic inescapable fact of our lives. They revolve to a certain extent around our nursing schedule, and to be honest, that schedule has been the single biggest headache of all of what we've gone through since we came home with Chloe. Originally when we came home from the NICU, we had nursing 24 hours a day, 7 days a week. That lasted all of 4 days before Jodie and I were on the verge of going crazy, and could only really talk via texting each other in the same room, so we cut it back pretty drastically. After the cutback, we ended up at about the hours we'd have at the six month home mark, and this was by week two. We love our nurses, but we've had some leave, and we've had to let some go, and so over time, as we have had difficulty replacing the nurses, holes have developed in the schedule. Interviewing, deciding, praying, and training nurses has been the single most frustrating and hardest part of this home journey. We feel as if we've been put in a managerial position having employees under us that we must decide and hire to be the best fit for Chloe. There's a constant struggle to make sure their skill level is equipped for someone as complex as Chloe. Originally, we really needed to always have two people with Chloe at all times, but due to the number of holes that started developing, we've gotten to the point where we're comfortable with one of us being home alone with Chloe. This means that for all intents and purposes, at least one of us needs to be home at all times.

2. Chloe's Care Needs

Chloe really needs to have someone within earshot of her at all times, so one of us or the nurse needs to be either in the front room or the kitchen at all times so that we can hear Chloe if she coughs or spits up. Either one of those means that we need to come over and use the suction machine to clear her secretions or spit up. The longer Chloe coughs or has spit up in her mouth (though it usually runs out into her eyes), the angrier she gets, and the longer it takes to calm her down. So, for example, if she coughs, and isn't suctioned, she'll cough harder, and if she coughs hard enough, she'll start throwing up, and if she does that, then she starts desatting. It's a vicious cycle that's really best avoided before it starts, so one of us is within earshot. Spitting up also means she runs the risk of aspirating again, and she also is a pro at spitting up silently, which is again why we need someone close, and especially a nurse at night. She also needs her belly vented once every couple of hours as she has trouble burping past the trach, so there's a tube with a big syringe we hook up to her G-Tube (the tube that we feed her stomach with). If we don't vent her, sometimes the gas will build up in her belly, and she reacts by spitting up. She's on a special formula called Elecare that gets fed directly to her belly 21 hours a day. These days she only is on her ventilator for 10 hours at night, and we're subtracting 2 of those hours every 4 nights until we're off the ventilator completely! We bathe and weigh her every day so the cardiac team can track her progress. After bath, we do either trach care where we clean around the trach and neck and change her dressing and strap or trach change where we completely change out the trach in her throat along with changing the dressing and neck strap. We change lots of diapers and weigh each one to report exactly how much she is outputting to the cardiac team. We take extreme strides to makes sure her diaper is always dry to help protect her one kidney against any UTIs. She needs rotated in her crib often, though she can roll from side to side and from back to side, set in her swing occasionally and cuddled lots! We also get her out on a blanket on the floor, hopefully at least once a day or every other day, to do physical theraphy, sensory therapy, helping her work on sitting up, etc.

3. Weekly Schedule

With the exception of Wednesday night, we have a nurse come every night at 9:00 and stay through 6 or 6:30. Because we don't have a night nurse on Wednesday nights, we have to do that night ourselves. One of us stays up until 4 or 5 am, and then the other one takes over so the one staying up late can sleep until noon or so. We have a nurse during the day (9-5) on Tuesday, Wednesday and Friday. Ideally we would have a nurse on Sunday mornings and Monday days, but we simply haven't been able to find a nurse to fill those hours that have the skill level fit for Chloe and also good blend for our family dynamic. These days, Jodie is okay taking care of Chloe and the kids while I am at work, but it's hard to get much in the way of housework or homeschool work done when she's by herself, though she somehow attempts both daily. Chloe seems to have this sixth sense, and every time you walk away from her she starts coughing. :-D

4. Daily Schedule

On the average run of the mill day, I wake up at 5:00 or 5:30 depending on the nursing schedule to take a shower and get ready for the day before coming down to get a report on the night from the nurse. I sign her paperwork and she leaves. I then have a quiet morning for the next hour or two depending on when the kids get up to do daily devotionals and reading. The kids and Jodie usually get up between 7:30 (though Isaac sometimes wanders out at 6:45) and 8:00. I feed them breakfast and get them headed in the direction of getting dressed (somedays more a battle than other). I usually try to clean the kitchen as we go. Typically from when I come down at 6am until 9am or so are some of Chloe's most restful hours. Sometimes you can just see her relax and settle in after she knows that I've come down. On days that we have a nurse, she comes at 9am and I head into work then. On days I work, but don't have a nurse, I still try to head in around 9, and on my days off, we split the Chloe cares as we go. At 9:00, she gets her blood pressure and her kidney med. She usually settles in for a morning nap until 10 or 11. While Chloe naps, on nursing days, Jodie updates the nurse from the night before and if it's a Tuesday, from the weekend and any changes if we had a Monday appointment day. Then, Jodie usually tries to do school stuff with Isaac and Abi while Chloe naps. When Chloe wakes up around 10 or 11, she usually gets a one hour feed break. With the removal of the last thing connecting her to equipment, this is an excellent time for play time or cuddles. We feed the kids lunch early at 11:30 or so and then send them out to play (hooray for warm weather!). Afternoon brings time for physical therapies and play time for Chloe. Along with all of that, Jodie tries to catch up on housework, doing design work, more schooling with the kids, talking on the phone with doctors and therapists and pharmacists. Chloe starts her second feed break, this one two hours, at about 3:00. Usually towards the middle of that, she gets her bath and trach care/change. The trach care and or change requires two people, and it's really best to do it while she's not on her feed, as it tends to cut down on the spitting up. If it's a day that I work and we don't have a nurse, I usually come home around 3:30 to help with bath and trach care and then work from home for a couple of hours more. Towards the end of the feed break, we give Chloe her prilosec (we give her a second dose 12 hours after whatever the time is we do this). She goes back on her feed and we do supper with the kids between five and six. Tonight is a good example of what supper looks like. We started supper together as a family, and after I had made it through my first sloppy joe, Chloe started coughing and trying to spit up, so I took care of her while the rest of the family finished dinner. Once I had her calmed down, I returned to finish my supper. Then begins the sprint towards bedtimes! Isaac and Abi get baths or showers, we read books, watch the occasional movie, sing songs, tickle a lot, etc.. Around 7:30, we start the wind down, which culminates with prayer time with Chloe (these days, Isaac really wants to learn The Lord's Prayer as a part of that time). We sing the Doxology together and head to bed. Since one of us needs to be near Chloe, it's a process of tucking in, and hugs and kisses, and more tucking in, and more hugs and kisses, and then a drink of water, and some more hugs and kisses, then a bathroom break, and more hugs and kisses. Usually they get settled in around 8:30. I head up to bed to read a little bit to wind down and then try to get to sleep around 9 or 9:30 depending on what time I'm getting up in the morning, and Jodie stays downstairs to talk through the day with the night nurse. At 9:00, Chloe gets another dose of her blood pressure med and kidney med, and at 10:00, she gets a dose of Aspirin so that the shunt in her heart does not clog off. After talking through the day with the nurse, Jodie will usually help the nurse settle Chloe in for the night and then come upstairs. It's at this point that Jodie gets her hour or two of mostly peace and quiet before she goes to sleep for the night. During the night, the nurse is doing all of the cares that we do during the day, suctioning, turning, and for the night nurse, really trying to keep Chloe comfortable, settled in and asleep. During the night, Chloe gets her multivitamin, since it upsets her belly, and we have to keep it away from all other meds and any possible activity. Often in the night, the regular alarms will go off, and we do our best to trust that the nurse has got it. If we hear lots of alarms, we might check the camera that we have installed over her bed (we can check on our phones) to see if the nurse needs help. Of the two of us, Jodie is the lighter sleeper, and is more likely to wake up to alarms. Also, Abi usually wakes up sometime in the night to an alarm, and will drag her stuff in and curl up on our floor (usually around 2am). In the old days we probably would have discouraged this, but in her room, all of the alarms are full volume for some reason, and our room is quieter, so we have never said anything. She doesn't say anything most of the time, and sometimes we don't even know she came in and curled up until the morning when there's something squishy on the floor. Isaac pretty consistently sleeps through the night (as far as we know). They have never complained, and really don't know any differently I suppose. Life is different I suppose, although these days we're used to it. There is a certain rhythm to the day that you get used to after a while, and again, we wouldn't trade it for the world.

5. Mental Health Days

You may or may not have caught it, but we don't get out much. My time is pretty much split completely between work and home, and Jodie is at home almost always. After a while in the house, you start to go a little stir crazy, so we try to plan into our months opportunities to get out for mental health time. Last week was a good example. On Friday, I took the day off of work, and spent the morning and early afternoon in a coffee shop, reading fiction with my headphones on listening to movie soundtracks. I came home around time for trach care, and then Jodie did the same thing on Saturday. Even a couple hours out for coffee are gold. It's rare, but we do try to work in some date nights. Since we don't have a nurse until 9:00, last Friday a friend came to watch the kids at 9 and we got out together for a couple of hours together. Hopefully, we can find some more times to do this kind of thing in the future. Honestly though, I am by nature on the hermit side of the introvert scale, so not getting out much doesn't suck my soul dry nearly as much as it does Jodie, so I try to come home early occasionally throughout the week to work from home while we have a nurse so that Jodie can go out and get a cup of coffee, or run to Target, or whatever needs done.

6. Cold and Flu Season

The statistics for babies with Chloe's heart condition before the Glenn surgery (which she should get in May or June) are really depressing, and a huge part of that is the toll that the flu or even a cold can wreak on a baby like Chloe. This has, of necessity, meant that our family has more or less been hermits for the last 5 months. I can probably count on one hand the number of play dates the kids have had, and this has meant that we have not been able to get out to church as a family since we have been home. Since we no longer have a Sunday nurse, this means also that Jodie hasn't been to church for months, but this too shall pass.

7. Appointments

I suppose no post on life with Chloe is really complete without a paragraph about Kansas City appointments. We usually head to Kansas City twice a month, and for those days, we typically pack in multiple appointments so we utilize our time well. This means that we get up bright and early to pack the car. We take her stroller, her travel vent and battery. All of her daily equipment. We take along back-ups for any and all supplies that we might possibly ever use. Once the car is packed, one of us takes the kids to the sitters, and then we put Chloe in and get going. Usually, we have to stop at least once for a diaper change along the way. If you thought car diaper changes were fun with a baby, you should add a vent and equipment to the mix! I remember when Isaac was a baby and we had taken a trip to Iowa where at one point we had to change his diaper in the car. I remember things not going well, pee going everywhere, not kind words were exhanged, and it was generally a disaster. Oddly, the Chloe car diaper change has become a well oiled machine, so we get it done and get back on the road. 

Typically from our house to Children's Mercy (with a diaper change in there) takes us about 3 hours. Once we get there, we get signed into the first appointment and the day starts. The day is typically pretty packed as we go from one doctor to the other. Inevitably, one of those appointments is late, which starts a domino effect for the day. Sometimes we eat lunch, sometimes not so much. After all of the appointments are done, we pack her back in and head home. Once we're home, and the kids are back home, we do Chloe's bath and a trach change (we always change it, whether it's a change day or not). We get her settled in, and she konks out exhausted. The kids are usually so excited that we're home that they want to play, and so we don't have any difficulty at all sleeping those days! We love our doctors at Children's Mercy. We have had the occasional frustration, but they have been professional and kind without exception. In particular, we love our Home Vent appointments, where the doctor, nurse practitioner, dietitian, social worker and another nurse or two all pack in the room and we have an appointment with the whole bunch, which tends to be a free flowing discussion about Chloe, and concerns and questions and care adjustments, etc.. Since everyone is in the room together, we only have to go through everything once, and the care providers will bounce ideas off of each other to address concerns as the doctor guides her care. There really aren't any appointments like it, and they are a wonderful use of time.

8. The Alarms

Okay, so here's my goal. I want you to hear the alarms, so I'm going to record them, and hopefully embed them so that you can hear what they sound like.

Vent Alarms: Every vent alarm sounds exactly the same. Any time the alarm sounds, you have to look at the vent to see what the alarm means. High Peep - There is water in the vent tubing that needs cleared. Low Peep - Chloe is moving around, probably shaking her head "no." Low Min Vol - There is air leaking out around her trach site. Disc/Sense - Chloe pulled the ventilator tube off of her trach (remember that she goes 14 hours a day off the vent, so we just have to reconnect her). Apnea - This is the only one that actually causes concern as it means that she's not breathing and the ventilator has had to kick into the mode where it does the breathing for her. We've never had this happen, and Lord willing, it won't. That said, if she pops her vent off, it'll switch from Disc/Sense to Apnea after a couple of seconds, and then the ventilator will try harder and harder to get air feedback to the point that her vent tubing becomes a train whistle.

Sat Monitor Alarm: This loud and rather distressing alarm means one of two things. Either her sensor isn't reading on her foot (95% of the time), or Chloe is desatting because she's really mad or not getting enough air and the oxygen in her blood is getting too low. Unfortunately again, the only way to tell which one of these is the case is by looking at the monitor, so if the alarm sounds, you have to check. If I ever decide to go into the medical equipment business, I'm going to design one that has a different alarm for each so that the parent or nurse doesn't have to panic and check every single time the alarm goes off.

Feed Pump: Hooray a machine with different alarms for different things! The first alarm is what sounds when the tube is kinked or the formula is out, or we forgot to unclamp the tube after venting her belly. The second alarm means that the machine thinks the dose is done.

The Suction Pump: Okay, so this isn't an alarm, but at night, hearing the nurse run the suction pump tells you how much Chloe is coughing, so if we hear this a lot in conjunction with the Sat Monitor Alarm, then we'll probably check the camera.

The Compressor Humidifier: This blasted thing is loud and annoying. And in theory, she should be starting to do this all night long as she weans off her vent through the night. We're talking up to 10-12 hours from 9pm-9am here soon. 

All of the Above: Sometimes they all go off at the same time.... (seriously, not joking)

The Oven: The oven beep is a quarter tone lower than the ventilator alarm, so when it beeps, it's just confusing, and if it beeps while the ventilator is beeping, it's grating on the ears. Sometimes the nurses get confused and can't figure out which machine, tell we finally tell them it's the oven. 

Conclusion

Hope that helps you all get a little picture of the life. I'm sure that all of the other vent and heart parents out there are probably nodding right along with much of this, and I'm sure in many ways our lives are quite different. One major blessing in our lives is that my job, with the exception of Sunday morning, has extremely flexible hours. This means that though I can't do all of my job from home, I am often able to get some work done working from home as needed by our schedule. We also are blessed with several wonderful nurses, and we know from experience now that even having as many exceptional nurses as we do is the exception rather than the rule. The most important part in all of this though is the prayers from you all that are holding us up through all of this. Only by God's grace and mercy are we able to get through a week, and we are so thankful for your prayer support!