What’s Inside My Emergency Hospital Bag

Sometimes emergencies happen and, when you’re a family with medically complex issues, inpatient hospital stays are something you need to prepare for. No one wants their child to catch a cold and end up in the hospital for a week but it does happen (it’s happened three for us) and a little preparation can help that impromptu trip more comfortable. 

That’s why I pack an Emergency Hospital Bag. I leave the bag hanging, ready to grab, in the event I need to call an ambulance or hop in the car for a trip to our Children’s Hospital. It’s sort of like a diaper bag but for parents and kiddos. After we get home (and I’ve showered, slept, and Netflixed … priorities 😉 ) I re-stock the bag, getting it ready for the next unplanned hospital visit. 

Today, I’m sharing what’s inside my emergency bag — I promise, I’ve used this bag several times and I’m always so thankful to have it on hand!

Necessities:

Clothes: I have one change of clothes for myself and Uriah. For myself, I like to take modest, relaxed pj type clothes so that I can have something decent to wear while I wash the outfit I came with. I also keep a spare headscarf. For Uriah, I keep a couple onesies with pants, one pj zip up, socks, bibs, and burp cloths on hand.

Toiletries: Travel size deodorant, toothbrush and paste, Tylenol (for the inevitable headaches that come with exhaustion, stress, and busyness), chapstick and lotion. (The hospital air is SO dry! You’ll be happy you brought it!)

$5 and meal vouchers: When your little one catches a cold and a minor sickness turns into an ambulance ride, increased ventilator settings, and multiple IV pricks you won’t have time to eat let alone keep tabs on your checking account. I keep $5 in my bag because sometimes you really, REALLY need a cafeteria Dr. Pepper and burger and a freebie $5 snack can be the pick-me-up you need. 

I also tuck away spare meal vouchers and use these throughout the stay. What is a meal voucher? It is happiness for the inpatient mom or dad who can’t leave their little one. Ask to see your floor’s social worker and request meal vouchers (which they often do for families who live more than 30 miles from the hospital).  

(And don’t be embarrassed. I know it feels like a hand-out but, sweet person, it’s not. You and/or your insurance are paying oodles and many hospitals are happy to offer meals. It’s super beneficial because you’re able to call a meal in and not leave your little. Just ask. 🙂 )

Comfort Items: 

Think happy, time-passing things. In my bag I have a magazine, a few toys for Uriah, my sleeping eye mask, a book I’ve been meaning to read, and peanut butter crackers.

For Christmas, D gave me a beautiful thermos and coffee cup set; it was one of my favorite gifts since he knows how much coffee comforts me during stressful times. I’ll plan on filling it up at the Ronald McDonald room and sipping on it throughout the day.

I’ve also got a handwritten note with Scripture a friend gave me when we began our NICU journey — it always encourages!

You could also throw in: slippers, a cozy blanket, earphones, travel size laundry soap, adult coloring books and pencils, travel size games (I’ve got BananaGram) sleeping mask, stationary, chocolate, phone charger, and your Bible.  

The key is to keep your bag light yet packed full of goodies that will make your hospital stay more comfortable. 

Whenever I get a chance to pack for a long hospital stay I bring along my diffuser (with Thieves and Lavender essential oils), extra outfits for Uriah, several of Uriah’s favorite toys and books, and I’m hoping to purchase a small french press one of these days. Goodbye nasty hospital coffee! Ha! 

But life is unpredictable so having a light, prepared, on-hand Emergency Bag gives peace of mind. Sometimes, making life easier requires just a little effort and preplanning but it’s absolutely worth it!

Tell me — are you a medically complex family? How do you prepare for unexpected hospital stays? What is in your Emergency Bag? Leave a comment below! I’d love to hear your thoughts! 

Happy packing!

Frannie

My Advice to New Trach Parents

My heart goes out to parents with children who have a tracheostomy and/or rely on a ventilator for airway. We’re currently in the middle of that adventure and though there are some hard and taxing days I wouldn’t change my son being able to breath safely and well for anything!

Here are 5 bits of encouragement and trach life hacks we’ve learned along the way.

1) It will get better … but it’s going to be a hard road for a while.

For a lot of parents, a tracheostomy is a last resort we pray never comes and when it does we expect immediate relief.

But sweet parent, it might not happen that way. I’ve found it’s very common for children to struggle immensely after getting their trach. It’s a whole new ball game from intubation.

Our son experienced multiple blue spells and codes during the first few weeks after the tracheostomy. There was one day when I literally said goodbye because the issues where so mysterious and complex; they were talking about giving him paralyzers so his body would relax and get his carbon dioxide back into safe numbers. It was horrible.

Here’s what needed changed: vent settings especially the PEEP needed raised, frequent suctioning, and most importantly, our son needed a longer trach.

That day I thought we were losing Uriah? It was the same day ENT finally did a scope, discovered he needed a longer trach, and it proved to be the “magic” we needed to give Uriah some relief; the trach wasn’t long enough to keep his bronchial open (TBM).

Of course, every child is unique and each reason for a tracheostomy is different. I’m just sharing what helped us overcome those hard, early days of #trachlife.

2) Listen to the doctors … but listen to your gut most of all.

You will come to know your child best; doctors specialize in medicine and diagnosis’ while you specialize in your child. We highly respect our medical team’s opinions but I’ve discovered that no one knows our son like we do!

I have woken up in the middle of the night, listened to the way Uriah was breathing, and known he was coming down with a sickness before it ever presented itself.

Your gut, instincts, and advocacy are vital in how well your child thrives.

And all the good doctors will tell you so!

3) Learn to go solo

When we first came home from the NICU, trach and tie changes were a two person job that involved sweat, nervous anxiety, and preparation.

Only when Uriah showed us he was stable and only when we were comfortable did we learn to change trachs solo. (If your child does not tolerate trach changes then do not make things worse by going solo!)

But if your child is stable, tolerates changes well, and you have a game plan in mind, it’s a good skill to master. Things happen and you might be by yourself when you need to do a sudden, unplanned trach or tie change.

My tips?

  • Practice changing the ties while someone is close by in case you need help.
  • Always have your new trach, ties, padding, wipes, and other tools ready and laid out on something sterile and clean before you start.
  • Train your child to sit still. It won’t happen immediately but eventually you’ll learn. You know how hard wrestling a toddler is to change a diaper? Imagine trying to put a piece of important plastic back into their tiny neck while they try to escape!

4) Suction, saline, and tie padding

You’ll learn the words and all the tricks associated with them! Here are a few tips our NICU nurses and fellow #TrachParents taught me.

  • Do not suction too deep, it will cause irritation, damage, bleeding, and soreness.
  • But don’t be afraid to suction! Your little one needs to breathe and that means suctioning until the goop is gone (or do a trach change). One trick is to squeeze a few droplets from a saline bullet into the trach to help clear any plugs that may have formed. But caution! Only a few droplets and suction immediately as you don’t want to drown your little!
  • It’s very common for the sensitive skin beneath the trach ties to break down, turn red, and even open into sores! Thankfully, Uriah has never had an issue with that and I think it’s partly due to being faithful in changing his ties and keeping clean, dry padding underneath. We used to use Mepilex to wick away moisture but now we use 4×4 Split Sponges cut in half and love it.

5) Nursing can be helpful … but do what’s best for your family.

Some NICUs will give you the option for home nursing; most likely, your child will qualify for so many hours a month and you can choose to use the hours in the day or nighttime hours depending on the availability of nurses.

And while some parents need nursing (because their child is unstable or highly care intensive) know that you do have the choice.

We chose not to have nursing and it was the best decision for our family. We’re a introverted couple who enjoy family time; we never felt comfortable with the idea of someone being in our home while we were sleeping or working. There were too many variables for us to consider nursing an option. (We did try nursing for about 2 months after being home for 5 but it ended up not working out and that’s okay! Our nurse was awesome but due to some insurance issues we moved on)

So, how do we do it without nursing?

  • We take “night shifts” when I am responsible for any weekday night alarms or cares that need addressed and my husband is responsible for weekend nights.
  • I learned how to drive solo by taking it slow, knowing my route, keeping the suction in the passenger seat while hooked up to Uriah in the back, and learning how to listen for secretions. I only drive solo when running errands in town; I’ve never attempted a long-distance drive.
  • Create a routine that works for your family! Find ways to move your child around, give them sensory input, play, and activities! Once you find your routine life gets so much easier.
  • If your child tolerates it, try using a baby carrier! It’s super fun; the only issue is that the vent and equipment can be cumbersome and super heavy. It’s possible to buy backpack straps for your ventilator and a smaller, more portable suction.
  • Organize, organize, organize! Once you find a place for all of the medical supplies life get’s so much easier!
  • We use a small utility cart from Sam’s Club to carry all of Uriah’s home medical equipment (vent, suction, pulse ox, water bag and heater, Ambubag, and feeding pump). It’s much easier to move then the large vent stand your DME will set you up with.
  • Order a medical grade stroller from whoever supplies your therapy services. I cried when I originally ordered Uriah’s Zippy Stroller (because it looked medical and I wanted something normal for once!). But I couldn’t live without his stroller — it keeps his back aligned and in good posture, it’s super sturdy and holds all his equipment, and I can take it anywhere because the wheels are large. It is heavy and bulky but worth it! (If you cannot order a medical grade stroller then try a double stroller!)

Trust me, it will get easier. You’ll need time to find out what works best for your family.

That’s it! Please, remember that I am not a medical professional so always consult your medical team. I’m just a mama who wants to share what has made our trach life so much easier!

Please let me know how you and your little one are doing? Trach life is challenging and sometimes scary but learning from each other helps lighten the load!

Happy adventuring!

Frannie

Look Who Is Standing!

Sweet people … I can’t quite tell you the thrill and sob-filled joy and delight which accompanies watching your child overcome. This week, Uriah started standing. He’s initiating standing and supporting himself for seconds at a time. He still needs support but wow

Wow

I don’t think we can appreciate how much strength, balance, mental concentration, and work goes into growing up. Babies without delays roll over, crawl, stand, walk, and eat without any fuss; babies with delay require months (or years) of therapies, special equipment and exercises, occasional medications to strengthen or loosen muscles, personalized shoes and braces, and hours of repetitive play. 

These children are warriors! Hard-working, adventurous, striving little warriors eager to do life their way. 

And how exciting when we see their sweat, tears, and work pay off! 

Love from a very excited mama, 

Frannie

Catching Up with You // Day 179 in the NICU

Keeping in touch @ AuthenticVirtue.com

Hello, sweet people. Ages have past since the last real update on Uriah; in fact, the last time I shared about our little guy’s progress he was only 3 1/2 months old. Now, he is two days away from 6 months. Let me share with you some of the amazing, hard, wonderful things we’ve been through over the last 5 months!

We have been in the NICU a total of 179 days. We’ve seen our little guy go through SO much and have been amazed by the goodness of God in his life.

Uriah has finally gotten used to his trach. The tracheotomy felt like a last resort but it has ended up being one of the best decisions we could have made. Now that he is no longer on the ventilator and breathing tube Uriah has so much freedom! I’m able to pick him up, play with him, do tummy time and roll around on the floor.

Speaking of tummy time, Uriah loves it! He loves to hold his head up on his own and is beginning to roll over! (Which is a lot for someone with a head in the 99th percentile!) 😀 He loves to stroke his hair, suck on his hands, and especially likes to bang his toys as hard as he can.

He’s begun teething and drools without end. The sad thing about having a trach is that it can keep you from using your voice; the doctors had told me not to expect to hear when Uriah cries, coos, or laughs. And while I cannot hear him in those traditional ways I was surprised and thrilled when he began making sounds around his trach. It’s a lot of gurgling breathing sounds but I’m positive he makes most of the noises on purpose — after all, he wants to talk and knows this is the only way he can! This morning I mimicked his gurgles and he got the funniest look on his face … I guess I was speaking his language!

Right now, we are hoping to go home in 6 to 8 weeks. Uriah has still not gotten to eat by mouth because it was discovered that his TE Fistula had reconnected and there was a small leak from his esophagus into his trachea and lungs. He has had two small procedures where they cauterize and place glue over the connection hoping that this will seal up the leak.

Hopefully, he will have a Swallow Study done next week and, if there is no leak, we can begin the process of eating! For a baby who is 6 months old and has never been able to eat by mouth this will be a ginormous task. But, we believe God is incredibly good and kind and that His ultimate will is best. Instead of being anxious over this step we’re finding ways to be thankful that we have even gotten this far!

This is a fun stage to be entering. As we think about going home in the next two months I’ve begun talking with private nursing agencies and had an inspector come to our home to ensure it would meet Uriah’s equipment needs. Sometimes, I am overwhelmed when I think about how different life will be — nighttime nurses in our home, carrying an “army’s worth” of supplies when we leave the home (or even move to a different room), and calling the electric company to put us on the “priority list” in case of a power outage are just a few things to consider.

But then I watch my baby boy play. This is a living, thriving, happy baby who was given so little hope in the beginning. This is the baby who watches me walk around his bed even though we were told he was blind. This is the baby who loves to listen to music even though we were told he was likely deaf. And this is the miracle who is thriving even though we were told there was too much damage to even try the necessary procedure. Being Uriah’s mom is a role I absolutely love and it is sweet.

Please keep lifting our family up in prayers as we near the finish of our NICU season. Some specific requests are:

  • For Uriah’s Swallow Study to be successful and the TE Fistula repaired so that we can begin eating by mouth
  • For Uriah to have the drive and want to to eat by mouth
  • For his current case of tracheitis (bacteria in his trach) to be controlled and subdued
  • For his little, upcoming teeth 🙂
  • For Dalton and I to have renewed joy and strength … I’ll tell ya, being separated most of the week for several months is not fun, not easy, and not enjoyable! But, I have to brag on Dalton! Every week, he finds ways to bless and encourage me. He is always finding ways to bring me refreshment even though he is the one working and alone all week. Thank You, Lord God, for giving me such a man!
  • For God’s will concerning private nursing. We are required to have someone awake with Uriah at all times because of his trach so we are applying for night nursing to help as we can’t be awake all the time and live normal, healthy, thriving lives.

And most importantly, thank you for all the love and prayers you have given us. There are days when I still can’t believe I’m not at home … it feels almost surreal to be away from home this long. But you have made this time not only bearable but time to enjoy, grow, and be blessed in. We thank God for you!

With love, blessings, and coffee,

Frannie