Sunday, September 21, 2014

Chloe Home Q&A

As our other post announced, Chloe is getting ready to come home.

What does this mean? So, so many things.

Discharge date is one week from this Monday. We will have a nurse driven to KC, then ride home with us.

Chloe is currently working on building resistance and strength for her trip home. This means she is using what is called an inline HME{slang for heat and moisture exchanged} as a "humidifier" of sorts to moisten and warm the air in her vent for the ride home. This is because her real little humidifier on her vent is too big for travel, so she must use this piece attached to her vent for any trips outside of the home. This tiny piece of plastic means a lot to her. It means travel is possible. But not without hard work. This tiny piece creates resistance on Chloe and thus she is working daily to build strength to stay on it for at least 3 hours (our trip home is just over 2).

Chloe is also working on gaining a consistent weight. This is crucial that she gain in time for her next heart surgery {possibly spring or whenever she outgrows her new shunt}. Currently she is 7lbs 9oz. She has been gaining, but on Lasix day she tends to lose a lot and have to start back over the next day on weight gain.

These are our two main prayer requests: To be able to hand the HME, and to gain weight.

Along with that is the fact that our other daughter has a cough. We are praying so hard that she would heal from this cough quickly. Praise that so far the rest of us are healthy and no fevers and that Abi's fever is now gone for 24+ hours. Please, please pray because if any one of us gets even a cold, she cannot come home on schedule.

Other prayer requests:
-For our insurance(s) to get all sorted out because private insurance, in cases like this, do not cover all that much. We're grateful for it, and it's meant we haven't paid hardly a dime on over $2 million in hospital bills, however, it will not cover a lot of things, like adequate nursing, some important and expensive supplies, etc.

-For nursing. Currently the company we have chosen has 11 nurses that have said yes to caring for Chloe. We'll have a couple observe her this coming week to get a better idea of what this tiny bundle is like and what it'll be like to care for her.

-Travel. Alan heads over Monday thru Wed, then comes back home, then we both head over together on Thursday.

1. What does discharge look like? What has to be lined up?
We've already had our home assessment by the medical equipment company. They will return this coming Wed afternoon with all of Chloe's equipment so that we can complete equipment training (please pray for knowledge, wisdom, skill as we learn this). We'll stay Thursday through Monday in KC. Friday and Saturday nights will be in the parent room on the NICU floor as we parent and care for Chloe all by ourselves under observation. They give us a day of rest on Sunday at RMcD house, then on Monday morning the adventure begins. We have people lined up in MHK to care for our kiddos over these days. We're trying to get nursing lined up and schedules decided and ready.

2. What does nursing care look like?
We will be Chloe's primary nurses and care team. We, the parents. We are the leaders, the nurses will follow because God is amazing and has a sense of humor and thinks we're equipped to do this. In other words, we were told that while we are beyond blessed by trained registered nurses in critical care NICU setting, we're about to venture out into the world and will most likely have licensed nurses vs. registered nurses. Although many of them have trach and vent experience, we know our girl and what makes her tick and how to suction her per her specific desires.

We will have nursing care most likely 24/7 for the first two weeks. At some point we'll reevaluate, and as we begin to be more comfortable on our own with Chloe, then we'll taper down on nursing care. That means we'll begin to only do 16 hours with nursing care/8 hours on our own. Then 12...then 10...then eventually we'll get to only 8 hours of care per day (and we can decide when this is, be it night so we can get rest, or day so that I have extra help while also taking care of our other littles while Alan is at work).

It's still unclear the requirements for who is with her, meaning at the beginning we need 2 trained people with her at any given time. This means appointments in KC will require either both parents, or one parent and one nurse, but we no longer will have a nurse traveling with us if we both would like to go. This means if our nurse's shift is done and it's just the two of us and errands need run, or a child needs taken to urgent care, or the mommy needs a coffee break....well...then we'll hope and pray that some people will come forward who are willing to be trained to be with Chloe so that we can do that from time to time. This person/these people will be required to learn infant and trach CPR, to learn to be suctioned, learn her numbers and what to watch for, learn feeding pumps and's asking so, so, so much of our friends. But without this, we'll never leave our home...

3. How will you go on a date night again?
Well...not sure...until we have others trained and learning Chloe, we cannot leave her. So much for the Rend Collective concert. Meaning, raising Chloe is about sacrifice, and we're willing to do that to make certain our daughter is in safe hands until we're comfortable leaving her. Date nights will get creative and will probably include lots of game nights, movie nights, making fun of furniture listings on craigslists again (fun pregnancy pastime), ordering delivery after kiddos are in bed, etc. One, someday, we'll get our date nights back.

4. Visitors Far & Wide {and Close}?
At the beginning at least, we'll greatly limit visitors. We'll ask you health questions and find out what color your snot was recently. We'll ask you to not only wash your hands, but use one of the 4 to-be-installed wall mount hand sanitizers. We'll ask you to not visit if you're a smoker. We'll ask you to possibly wear a gown if you were recently around someone else that had a cough or cold but are ok yourself. Or we might say sorry, now is not the time, nothing personal, just the state of well being of our open-heart-surgery-lung-diseased-daughter. Alan's got a great post coming on this for more details... And it means the visits we do have will probably be limited on time. Remember: Chloe's schedule of medicines, trach care, PT, OT, getting down for naps, baths, assessments wears us out, then add a 4.75yr old and a 3 yr old into that mix.

Family visits: Limit 2 people. We'll probably ask that you get a hotel because we're on lockdown here (remember, this is not just our home anymore, it's a hospital room, and just like in the hospital, we need to limit number of visitors at any given time). If it's only 1 person then we might be able to house you here but it will have to be discussed in advance.

Friends: Call first. Text first. Contact us first so we can make sure we're ready {i.e. hand sanitizer stocked?? Will they need a gown? Will they need gloves?? Are they delivering coffee or not? ;).

Visitors bringing meals: Please know we are so, so, SO appreciative of the meals and extra help. Our hearts are swelling with joy and peace knowing you're all there to help us out. However, please know that dropping off a meal does not necessarily mean a visit with or getting to meet Chloe. This all depends on your health, our level of sanity, and where Chloe is at on her daily routine. Visits wear her out too because they throw her off her little schedule, so we have to be sensitive to her as well and not wear her out. Growing and breathing are her biggest goals, and that's hard if she's exhausted. This does not mean no visits or meeting new friends, just that you'll need to check with us first.

4a. Holidays?
It means we will not be traveling home to Iowa for months and months. Nope. Not with a baby who can barely be on the HME for 3 hours just to get home. Not chancing exposing to cold weather and the risk of sickness. It means we hermit-it-up and enjoy the holidays this year as just our tiny family of 5.5 (the nurse and cat will probably count as family on those days). Two words: Get Skype ;). We LOVE to skype family and friends. We need to know they're still there supporting us and cheering us on even though we can't always have them here. We'll encourage any family and friends to try setting up routine weekly skype dates.

Please know this does not mean we want to be left completely alone. We need and crave interaction. We pray this is for a short time and that we can continue regular visits and playdates soon. We pray that if it is a good day for all that we would be able to get out, to meet a new friend of Chloe's, to have little friends over for playdates with the kids, or to send our kids out for a playdate. Our hearts crave "normal", but there will be a transition from hospital to home, and for Chloe's health, we do not know how many days, weeks, months this will take, especially since this is cold and flu season upon us. Please do not leave us completely alone~text. Call. Check in. Email. Facebook us. Message us. Remind us you're there. 

5. How is Chloe doing with everything else?
Eyes-follow up with eye clinic at some point. Doing good. Might need minor surgery in future. Will most likely mean glasses when she's a bit older.

Ears-Moderate to Severe hearing loss, mainly due to how she's fearfully and wonderfully made, although some of it could be caused by fluid in her ears due to her cleft palate. She might need tubes to help with this until her cleft palate is fixed (around 1 year old). Sometime this week we'll do molds for her hearing aids. She can hear, but it's like the teacher on Charlie Brown. It's muffled and cloudy and because she's a baby, our language is unknown. It's like Isaac shouting downstairs from upstairs that he needs more TP and me hearing him but can't understand what he's saying. Sometimes it startles her if we're talking by her and she is asleep and didn't know we're there. Music, however, soothes her. We this think is because she can understand that it's a repetitive melody vs. hearing our voices and not knowing what exactly we're saying. Need to get ipod and speakers for her bed so that she can have music throughout the day and with her naps. She'll be getting hearing aids in the next 3-6 weeks, and will wear them whenever she's awake (they come off for naps and nights).

Club Feet-the right foot is still only needing physical therapy (PT), while the left one will have a splint. She also wears a 'soft splint' on the right foot to keep it from being able to bend too far upward and back. She wears her splints at the same time-one for four hours, off for four hours, off at night. We're waiting to fix her left club foot until she's bigger and more stable from heart surgery as she needs off her blood thinners for that surgery (they slice the achilles tendon and then have it grow back and casting during this time).

Heart-stable enough to bring her home. Doing good. No more random desatting episodes. She still takes a tiny dip from time to time if she needs suctioned. Next surgery is the Glen and that is whenever she out-grows her shunt (hoping not till spring). She'll be closely monitored here at home by nurses and us and also by frequent (every 2 weeks-ish) appointments back in KC through their CHAMPS program.

Lungs/Respiratory/Trach-her lungs are still healing from all those months of desatting and lower oxygen to them. She's working hard to wean off her vent. She's a ROCKSTAR. She's currently so low on vent settings that all she needs is a tiny bit of positive pressure so that when she exhales her lung doesn't close in (think sucking air out of baggie), but enough pressure left to keep her lungs open when she exhales. This is mainly the ONLY thing she needs her vent for these days. She'll work on weaning off vent when she's home, which includes wearing a little piece of plastic similar to her HME that moistens the air (has filters on the end) but it literally is just a piece of plastic stump so to speak hooked on the end of her trach meaning no tubes. She'll gradually work toward being on this for minimal times throughout coming days and weeks until she weans off the vent and only needs those. To keep the air moist and not dry (think of how your body gets in the winter dry air and breathing issues it causes), she'll always wear that piece if she's off the vent but until she can no longer have her trach in, which will be around age 3 or 4 depending on when her last heart surgery is. In other words, she might not need her vent and tubes for much longer, but we need to keep that trach in place for a few years. It's what provides her stable airway for all her surgeries as well.

*A note on her trach and vent. Yes, technically it is life support. We have a baby on life support here in our home. Many are asking and concerned about how long she'll have to be on this "life support". But remember, she's not a vegetable. She's doing amazing. She's learning and growing and gaining strength and reaching her own set of milestones. She's barely on any settings for her vent, only enough to give her a bit of umph after she takes breaths. Her trisomy has given her a floppy airway, but that doesn't mean in time and growth it won't heal. We've had some refer to her vent as life support and it makes us feel uncomfortable, like we've made drastic and bad decisions to keep our daughter alive. Please know that it was not an easy decision to put her on the vent, but it was a very much prayed about and well informed decision, and for those that do not know or are not familiar, many, MANY babies and kiddos are on trachs and vents as they grow and to help them breathe and grow so that one day they can be off of them. You've seen her smile with it ;). You've seen her grasp it for comfort when she's trying to sleep. It's becoming her new security blanket or taggie. It's a part of her now, and it's not so scary to us. Learning the settings and controlling it-yes, very scary. But the actual idea of it is no longer as intimidating. And it's ok to stare, but ask questions while you do. Remember, it does not hurt her and her ties are not choking her. It's new and different and at times uncomfortable, but she is not in any pain with it. Please do not judge our decision, especially if you are unfamiliar with what a trach and vent are. We would love for you to learn beside us. We were intimidated by it at first as well, but we're learning and becoming more relaxed by asking questions. And saline bullets to flush the suction on it are like little mini squirt guns ;). I only speak from experience of accidentally shooting one of our primaries ;).

Kidney-so far, so good. She's on blood pressure meds as needed. She is on a diuretic to keep fluid off her (2x per week). This helps her pee off any extra fluids. Pray she never gets UTI's as any infection to her kidneys causes trouble and risks.

6. What's life like with a trach baby at home?
Yet to be figured out. However, it's surreal to hear that we need to have a 24hr pharmacy, that we need to inform our local ER of her condition, that we have to call local EMS and make sure they're aware of her, that we are asking various friends in different neighborhoods if in case of power outage, can we come crash any time day or night with her because she needs her ventilator and monitors plugged in {and because if not, then we camp out at the ER until our power is back on}, that we need to be getting a landline installed this week instead of just our cell phones, Gone are the days of just running an errand, going to Target, even just going to church will look different and present its own set of crazy logistics.

It's about being trained to know what to do in any circumstance. It's about knowing that it's ok to say no to visitors and help if they're sick. It's about asking for help when we need it. It's about relying on so many others other than ourselves to get us through this. It's about learning to play well with others {new nurses are intimidating and we're in mama/papa bear protection overdrive right now}. It's about being Chloe's biggest advocate in all of this.

I'm sure there are still many questions, and we'll try to address them in coming days and weeks, but these are the most popular asked and this helps us to not have to repeat ourselves because she's so complex and it's wearing. But also, don't be afraid to ask any questions. Just might help us if you email them or text them to make sure we have time to adequately answer them for you. Ask about her trach. Ask for pictures. Ask about ventilator. Ask about how she's doing each day. Ask about PT/OT. Ask whatever you'd like. We're open to discussion and are huge fans in helping others understand the uniqueness of Chloe. Just know we might not be able to respond immediately.

There are many unknowns and fears and worries and anxieties we still have surrounding all of this, but cannot all be addressed in one packaged blog post. We'll reveal those and how the Lord is taking us through them in future posts.

And in the meantime, we'll rest knowing He's got this. He's been with us this far. He's been with us since December when this all began. He was there the day He created her within me. We will continue to follow on this journey. We will continue to go wherever He leads.


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