Category Archives: Hospital life

Adventures in Communication

I hope to share more formally about our adventures in communication with June, specifically the use of American Sign Language, verbal speech development, and her assistive communication device. However, for a few months I’ve been savoring some much needed rest and protecting a “margin” against over-busy-ness in my life and that of the kids, which has led to postponing blogging. This little scene was too enjoyable not to share though.  This is a little of the linguistic fun we are having over at the Safari House:

adventures-in-communication

The kids and I arrived at the speech therapy floor of the hospital for the last appointment slot of the day.  Only one other family was there- a mother, father, a preschool-aged girl and an infant.  My phone had died so I said to the father, “Could you tell me what time it is?” gauging his reaction to see if he understood English.  When I saw his uncertain expression I signed TIME as I repeated my question, since pointing to your wrist is a pretty universal gesture.

“Ah, yes!” He said. “Four……forty five?” he said.  I thanked him and we turned our attention to the kids, who were hoping to play together.  Rowan invited the girl into the playhouse he and June occupied:

“Would you like to sit?” he said repeatedly to her.

The girl was uncertain as her father walked with her to the playhouse, whispering to her to say “hola.”  I mentally dusted off my Spanish and attempted to translate Rowan’s question.

“Rowan, tell her ‘quieres sentar?'” I said.

“Um, can you tell her?” he replied.  But the girl and her father were excited about this development nonetheless.  In our short time together, we all proceeded to have a conversation of comical multi-lingual proportions.

“How…..she is old?” the father asked in English.

“Three years old in….” I attempted in Spanish.  “Octobrie? Octiobray? Um, October.”  I said.

June began signing in ASL about the family’s infant daughter, and I attempted to translate this into Spanish.

“She uses the language of the hands,” was my best try at saying ‘she signs’ in Spanish.  I didn’t know the Spanish word for “bee” so my attempts to explain that June liked the bee on their child’s rattle were not fruitful.

To add to the fun, June pointed to a sign (as in a printed notice, not an ASL sign) on the play area that I had reviewed with her earlier.

“What does that say?” she signed (as in ASL sign not a printed notice) while I was speaking with the mother.  The notice was written in both English and Spanish, and in hopes of including everyone in the conversation, I signed ASL while I read the English then signed the ASL again while trying to get the vowel sounds right in the Spanish.

At one point, June was admiring the infant’s pink shoes, and I hoped I learn the Spanish word for “pink.”

In Spanish I said, “How do you say…..these shoes are…..” and at this point I realized I forgot the Spanish word for “color” since the similar ‘calor’ means ‘hot’ so I signed COLOR in ASL which was not helpful at all.  So I continued in Spanish, “like….red, orange, blue….” signing the words simultaneously for June.

“Oh,” the father said, pointing to the shoes. “Rosado.”

“Rosado is ‘pink’ in Spanish,” I said and signed for June.

When we parted, we adults said our farewells in Spanish with English words throw in, their little girl had warmed up to her new friends and held Miles’ face lovingly for several seconds as a goodbye, and June surprised us all by piping up with her ever-growing speech skills and saying in Spanish, “Adios!”

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Crazy Heart Block Quilt- Complete!

I mentioned recently that I finished the “Crazy Heart Block Quilt” that I started for June last summer while she was recovering from her LTR surgery.  Here’s a peek at it and a few things I learned.

crazy-heart-block-quilt

I didn’t know if my kooky idea for this quilt would work at all, because in order to do it, I had to try some unconventional techniques and break a few sewing rules.  First, I hand sewed a stack of irregular shapes at the bedside in a crazy quilting style because, first, I love that style, and secondly, it does not demand precision that I cannot maintain while sewing in the ICU with June, stopping and starting often and without using a table.  Later I overlaid the irregular shapes with a fabric square with a heart cut out of the center to reveal the crazy quilted section below. Each crazy quilted section is built around a green frog fabric piece, because June loves Hopkins the frog from Signing Time.  (And because I acquired lots of great frog fabric.)  The hearts-and-crazy-quilting squares were sewed into 2×2 squares, and alternated with 2×2 squares of pink and the same frog-patterned fabric that the crazy quilted sections are built around. Then, much to my discomfort, June decided she wanted the quilt to be bound in dark blue, which is not located anywhere else in the quilt, but, hey, it adds an interesting contrast.

 

crazy-heart-block

What worked: June loves the quilt.  Also, using the negative space of the heart-shaped squares turned out just how I hoped.

What didn’t work: I mixed all types of fabric for the quilt including flannel, fleece and quilting cotton because I was working exclusively from my stash.  This is dangerous because different fabrics react different to wear, tear and washing which can damage the quilt. But I wanted to try it anyway to test the limits of what I can mix and match from my large and varied collection of fabric of indeterminate type.  The quilt held up surprisingly well after washing, although one crazy-quilted section did rip and needs repaired.

Special Needs Family Outings: What Didn’t Work (for us) Part 2 of 2

Today we conclude the special needs family outings series with the second part of the discussion on what did not work so well for us (see part 1 here).  Here we’ll share difficulties we encountered during two of the most challenging travel situations we have faced: flying and handling a medical emergency away from home.

Special needs family outings What Didnt work

 

Flying With a Medically Complex Kiddo

June thought having her own airplane seat was pretty cool when big brother wanted to take a turn as mama's lap baby

June thought having her own airplane seat was pretty cool when big brother wanted to take a turn as mama’s lap baby

Two winters ago, our family made the unusual decision to fly across the country with the kids in the middle of RSV season.  My grandfather had passed away after a long illness, and it was important to our family to join the many people who were gathering to celebrate his life and honor his memory.  In order to do this, we faced many challenges including flying with very young children, having access to June’s medical equipment during the flight, and combating the risk of contracting a cold, flu or RSV in the cramped germ incubator that is an airplane.  One idea we had was to snag the first seat in our section, reducing the number of people we are close to.  That did not work, since we then had no underseat storage ahead of us, and we had lots of equipment to stow in arm’s reach.  Another bright idea we had was to be the last people to board the plane, so we reduce the amount of time we are sitting in stagnant air before the plane’s air circulation/cleaner system is operating (the internet said this was a good idea).  That backfired as well, as the plane was full to capacity and passengers were already having to check their carry-ons because the overhead storage was full.  Along came us, with 6 carry-ons which were all essential.  We stood awkwardly at the head of the plane isle while other people’s luggage was shuffled and checked to make room for ours.  And also so that we could switch seats with some very kind passengers in our section since our spots at the front wouldn’t work for us.  When we were seated, we discovered that the essential items we needed to have on-hand (oxygen concentrator, suction machine, and emergency bag) did not all fit under the seat in front of us, so one item had to be stowed above during the critical take-off and landing times, when we aren’t allowed to stand up. I waited very nervously for those few minutes wondering what would happen to me if June did have an emergency and I had to stand and take out our equipment during that critical take-off time.  Thankfully we had no emergencies on either flight. Lastly, on the flight back, which I made alone with the two kids, Rowan had a loud, one-hour melt-down during which we collected some stares, some sympathetic grimaces, and even some gold fish crackers that a compassionate mom brought to us from another section of the plane.  These things were all stressful, but not insurmountable.  Despite the logistic adjustments during boarding and the tantrum, the kids were fascinated by the flight and we had a really wonderful vacation. While Greg and I enjoyed seeing everyone and having dozens of extra hands helping with the kids, the kids learned about their great-grandfather’s amazing life, met many relatives, played in snow for the first time, and witness vehicles driving on lakes.

Vehicles on frozen lake in MN

 

Local Medical Care Is Inadequate (and everything else went wrong)

June, two days after an unproductive trip to the local ER, recovering splendidly and having fun on our road trip this summer.

June, two days after an unproductive trip to the local ER, recovering splendidly and having fun on our road trip this summer.

When travelling out of our own metro area, Greg and I always look up the nearest children’s hospitals in the event that June needs emergency care since most adult or non-specialty hospitals don’t have the experience and equipment to help her.  During our recent road trip, we were encouraged that we would be close-ish to *the* best children’s hospital for trach patients in the country (Cinncinatti Children’s). But when June developed a bad stomach bug, we were 5.5 hours away from Cinncinatti.  June was getting dehydrated vomiting every 30 minutes, so we decided to seek an IV at the local hospital while we evaluated whether we should make that 5.5 hour hike.  My sister graciously took Rowan for the day while Greg, Miles, June and I went to the hospital ER in the mid-sized city close to the relatives we were visiting.  As always, I warned the nurses that it is always very difficult to get an IV in June, and even moreso when she’s dehydrated.  So, I pointed out the only two sites that are successful for IVs 90% of the time, requested ultrasound assistance in locating the vein, and asked that they not draw blood from an established IV.  Some of the nurses were condescending and short with me, stating that they will use their judgment as professionals, and they proceeded to use sites other than those I showed (which failed), tried repeatedly without the ultrasound (which failed), got an IV with the ultrasound and then drew back for blood on it (which caused it to fail), and ultimately did not succeed in establishing an IV at all. The doctor prescribed June an anti-nausea medication which I refused because I knew from previous illnesses there is a life-threatening interaction between it and her heart medication.  The doctor also ordered a chest X-ray but discharged us before reading it. In short, the ER trip was a torturous waste of our time.  Thankfully, June’s vomiting subsided on its own without complications. But that was just the beginning of our misadventures.

In the hospital Greg and I ran down our cell phone batteries entertaining June and keeping family members updated. Miles and I left the hospital with plans to charge my phone in the car, pick up Rowan from across town then return to pick Greg and June up. But I discovered that my charger was not in the car; it was with the jumble of cords we had unpacked back at our lodging.  As I pulled away from the hospital, my phone died completely.  I didn’t have the address or phone of where Rowan was staying.  I didn’t have a map or GPS.  I couldn’t contact Greg. And after one or two turns on one-way streets, I didn’t even know where the hospital was anymore.  So. I drove in “boxes,” always turning right onto one-way streets to stay in the vicinity until I could find something I recognized.  Finally I recognized a street name, then a landmark, and then, by divine providence…Greg and June, who had exited the hospital and were headed for my former street-parking spot.  And Greg’s phone had 22% battery life.  So we rationed the battery to find our way to pick up Rowan and then to navigate to the place we were staying, 22 miles way.  We watched the battery life dwindle as we traveled the dark rural roads.  Near the end of the journey found ourselves on an unlit dirt road lined with 6-foot-high corn on both sides, and our headlights illuminated a fork in the road that wasn’t on the map. And then the phone died completely.  If the horror movies are to be believed, we just knew we were all about to be devoured by zombies.  I must add that despite the drama of it all and the danger involved (we were lost, without communication, in a deserted area with a sick, medically complex child), Greg and I laughed at the sheer absurdity of the situation, and the fact that we tend to have more than our fair share of wild surprises like this.  Ultimately, we saw a light off to the right, so we decided to try that fork. This is another glimmer of divine providence, because the light turned out to be that of the relatives house where we were staying.

June got over the stomach bug fine with Gatorade and some phone consults with our doctors, and we went on to have a ton of fun on the trip.  The boys actually developed the stomach bug as well just in time for our drive home.  But we took advantage of the leisurely pace we had planned for the drive back, and since the kids mostly preferred to rest or play quietly while they were recovering, the drive home was actually pretty relaxing.  We even enjoyed a stop at Dinosaur World without any gastric emergencies.

Dinosaur World in Kentucky is awesome.

Dinosaur World in Kentucky is awesome.

I hope that these stories of our shenanigans may offer some knowledge, wisdom and humor to other special needs families.  I hope they don’t dissuade any special needs families from travelling if they’re considering doing so.  Because despite these bumps, these trips have all been worth it.  The memories we made far outweigh the various difficulties we encountered.  These things have been good learning opportunities, too, and have helped us to prepare better next time.  Which means that every time we venture out, we are increasing our ability, wisdom and mobility as a family.  And collecting some good and unusual stories along the way.

Special Needs Family Outings- What Didn’t Work (for us), Part 1 of 2

We conclude our special needs family outings series with a discussion of what did not work so well for us when traveling.  I’ve divided the post into two parts, the first being an assortment of issues/examples and the second will cover difficulties we had while flying and handling a medical emergency away from home.

We try mightily with careful planning and creative ‘rigging’ to minimize our risk, overcome obstacles to travelling and increase our mobility.  We’ve been fortunate to enjoy several memorable trips in the last few years which were overall very successful.  But they weren’t without bumps big and small along the way.

Special needs family outings What Didnt work

Forgetting Things
We tuck away duplicates of everything possible in case we ever forget something, but there are some essential items that have no such back-up.  Most notably, the portable suction machine which we keep in a bag along with everything needed for an emergency.  Having this “emergency bag” with June at all times is a matter of life or death. As such, I have forgotten to put it in the car about three times ever, and in each case I noticed its absence within 2 minutes and turned around to retrieve it without incident.  Actually for the first two years of June’s life I *never* forgot it because we suctioned her at least once an hour.  But as she grew, and especially after her LTR surgery last summer, June can clear mucus from her trach tube very effectively and does not need to be machine suctioned very often; sometimes only once in 24 hours.  So the first time I forgot it, it was because I capitalized on the momentum of the particularly rambunctious kids who were already in the garage for an impromptu drive around the block.  The break in routine, leaving from the garage rather than the house, contributed to forgetting to grab the bag. On the other two occasions, I had another person with me and we each assumed the other had grabbed the bag.  Now we verbally confirm that assumption before leaving.  In a less dramatic event, when June had first switched from total oral feeding to total tube feeding after her surgery last summer, we once forgot her feeding pump and prescription formula at home when we went on a day trip.  I had the back-up g-tube extension, but we had no way to acquire the rare formula she needed.  So we gave her water and Pedialyte manually that day and cut the trip short by just a little.

Lack of Handicap Access

Our current set-up, the Graco Ready2Grow loaded with emergency bag, oxygen tank (when needed), diaper bag and a couple a' kids

Our current set-up, the Graco Ready2Grow loaded with emergency bag, oxygen tank (when needed), diaper bag and a couple a’ kids

We’ve struggled at times with lack of ramps or space for the stroller that carries June’s medical equipment. A local museum has a strict no-stroller policy at one of their wildlife exhibits, but we explained that (at the time, before June could walk, and I couldn’t carry both her, the suction bag and the emergency bag) the stroller is medically necessary to carry the heavy equipment in the same way that a wheelchair is necessary for some guests, and I asked if the exhibit is handicap accessible in that regard.  That helped to clarify our need and we gained entry, but still while we toured the exhibit, other well-meaning staff approached us to explain that our stroller was contraband.

In another instance when we all went to support Greg at a mud/adventure race, we were assured access to handicap parking at the event itself, but the day of, due to muddy conditions, all vehicles were required to park in a field 18 MILES AWAY and return via shuttle busses.  So, we parked in the field, loaded the emergency bag AND oxygen tank into the double stroller since we would not have access to our car, pushed the stroller across uneven rocky ground and loaded it into the back of a yellow school bus that served as a shuttle.  Then at the event they weren’t kidding about the mud.  The heavy laden, low-riding (non-jogging) double stroller sunk into the stuff.  At times, my feet had no traction to even attempt to push it, and when I did push, the front end was just accumulating a wall of mud in front of it as it burrowed further into its own little mud quarry.  Several times, friendly race finishers, caked with mud and full of endorphines and adrenaline, happily picked up the entire stroller as I traversed the roughest patches of the spectator areas. To top it off, Greg had no cell phone on the muddy, wet race course and couldn’t communicate to me that his team was taking four hours longer than expected to finish.  By the end of it, we were all thoroughly baked in the sun, I had wearily checked with all the medical tents and authorities for news of Greg’s whereabouts, and it was only by a small miracle that we eventually did spot each other in the sea of 10,000 muddy people.

The mud. I would have enjoyed the mud fun a lot more if it wasn't taking place on farm land that was littered with cow patties....

The mud. All that mud.

Environmental Hazards: Smoke, Heat and Weather

The most common environmental hazards we deal with are proximity to smoke and lack of air conditioning.  Usually we can counter these by leaving the smoky area or hopping into the car for some AC, but that’s not always possible (such as when your car is parked 18 miles away. Ahem.). When visiting relatives once, we made plans to stay at a home that I had completely forgotten was infused with 50 years of cigarette smoke AND had no air conditioning.  We had to change accommodation as tactfully as possible.  In another instance, Greg and I used the Hotwire website to secure discounted lodging only to find that the hotel it booked for us only had smoking rooms available (even given the medical basis for our need).  They explained that they could not offer a refund since we dealt with Hotwire, and likewise, Hotwire has a rather iron-clad no-refund policy with ample warning-jargon in the usage agreement that room preferences and amenities may not be available. (This warning never bothered me because we aren’t picky about amenities, but the possibility of being left with only smoking rooms never occurred to me.)  We accepted the fact that we’d probably would not get a refund, and looked around for other lodging that night anyway, without success.  Ultimately we returned to the Hotwire find and reluctantly settled into the smoky room for a few hours of sleep.

In terms of weather, we always have to be mindful of potential power outages that would limit our use of June’s medical equipment as well as any conditions (road closures, disasters) that would affect our access to medical care if needed.  Thankfully we haven’t had any problems, but we have altered our course when bad weather arose- including a few minutes after we took this photo while stretching our legs at a park on the Mississippi River.  A severe storm was blowing in quickly from just across the river, and a minute after we snapped that photo, everyone in the area was scattering, running for cars and shelter as the surprising 60 mph winds arrived just ahead of the rain.  Somewhere at that park is a favorite sparkly shoe of June’s that we lost when we picked her up to run to the car. (Thankfully, our fashionista has plenty more.)

ms-river

Check back later this week for part two!

 

Special Needs Family Outings: What Worked (for us)

We will end the special needs family outing series with two fun posts: what worked for us when travelling near and far, and what didn’t.  I am excited to share this because as I mentioned in the first series post, we’ve done a lot of adventuring this summer! Here are a few of our travel ideas and plans that DID work for us recently or in the past.

Special needs family outings What Worked

Packing: Lists, Redundancy, and “The Question”

Kid Suitcase

The biggest concern that I have about travelling anywhere is not having a critical item during an emergency.  We combat this a few ways. First, by using a packing list and packing map that shows where everything is stored (see our free printable here).  Secondly, in addition to the fully stocked emergency bag that we take everywhere, we store duplicates of essential items in convenient places.  This includes:

*Trachs and ambu bags in June’s room, the stroller, upstairs, one under the driver’s seat of the car and one in the back of the car with the oxygen tank

*Suction catheters in the glove boxes of both cars which could be used as manual suction if the suction machine wasn’t available

*Sterile g-tube kit in June’s room and in the car

*HMEs in the suction bag and in the car console

*Extra G-tube extension and 60CC syringe in the suction bag

*When travelling out of state, I bring either our spare suction machine or a spare suction canister and tubing

And finally, Greg and I ask a quick question- The Question- anytime we venture out– “What is the most important thing we could forget?” This serves to remind us that the vast majority of forgotten items are easily replaceable on the trip, so we don’t even inquire about toiletries or small clothing items we may have missed.  This allows us to mentally check off only the “most important” things are those that can’t easily be acquired, like glasses, wallet, ID, cell phone chargers, prescription meds, and June’s specialized medical supplies.

Planning: Extra Time, Flexible Schedule, Exercise, and Breaks Alone

Dino World

We have been fortunate to take the kids on two cross-country trips in the past 2 years. They both went wonderfully, although with humorous bumps along the way which I’ll talk about in the next post- what didn’t work.  The key to enjoying long trips away from home, for us, has been building flexibility into our schedule and accommodations, including:

*Not scheduling a specific arrival time when driving so that we could stop every 2-3 hours during the day to play at local parks without feeling like we’re on the clock (Oh how Google maps has changed this aspect of vacation as compared to my childhood; at any moment we chose, we could navigate to the nearest park, some of which were tiny neighborhood playgrounds that we never guessed were there.)

*Extending our first trip by one week because it was going so well; there was a $100 fee to change the flight date, but we viewed it as an incredible bargain for a whole extra week of vacation.

*Extending the drive time home on our recent trip by one day (and an extra hotel stay), knowing that there were several sights we wanted to see along the way (like Dino World, which was awesome!) and that we would be tired from the exertions during the vacation

 

*Ensuring that, even when seeing family, we always had a private space of our own available to us to tend to the kids’ needs for naps, food, and recharging our introvert batteries.

Help: Seeking and Accepting

Beach

Rowan has a day at the beach with his grandparents

We are blessed with wonderful friends and family.  So when planning to travel, we think of ways that others could help, whether it is the family and friends we are visiting or even the hotels we use.  First, we are able to lighten our packing load by borrowing bulky items like a room humidifier, pack and play or cold weather extra clothes.  Secondly, when hazards to June are involved in the group plans, such as a trip to the pool or beach, we utilize the extra hands available to let the boys enjoy the sand and water while June plays elsewhere.  And lastly, we are grateful for extra hands when emergencies arise.  During our last trip, June unexpectedly got sick and had to go to the ER (more on that in the next post, too).  My sister, who we were visiting, gladly took Rowan for the entire day while we navigated an unfamiliar hospital system.

Electronics: Save for Last

Ghosts in the Car

The kids spent an appreciable amount of time cracking up about pretending to be ghosts early in the road trip.

This one may be relatively unique to our family, as I know many people have great success with electronics in the car; but I find that if I give the kids a phone or tablet early in the trip, they get frustrated when they can’t find or do EXACTLY what they want on it, and soon the phone is getting beaten on and thrown.  (Anyone else experience projectile iPhones while driving?)  And of course there’s the battery life issue.  In contrast, I find that the kids get a whole lot more mileage (literally) out of creative play like coloring, stickers, light bright/etch-a-sketch, and imaginary games; I think these activities are flexible enough to engage the kids pent up energy. As noted above, the kids spent about 20 minutes gleefully pretending to be ghosts.  Another time, Rowan was thoroughly amused to find that June was taking the pretend play so seriously that if he pretended to spill imaginary milk on her, she would cry urgently for a change of clothes. Reason wasn’t really helping, so Greg and I intervened by arming June with an imaginary jelly bean launcher. We all had silly fun dodging imaginary candy.  And I much prefer that to dodging non-imaginary cell phones. We find that- at least for our Safari family and the ages/stage the kids are in now- these imaginary pursuits can fill nearly an entire day of driving, and when the kids do *tire* of them, we introduce the electronics for more passive entertainment; the kids even nodded off watching their phones when they received them towards the end of our daily driving.

Those are some of the things that went *right* or have worked well for our family in our current situation.  There were plenty of hiccups thrown in as well though, some of which are pretty funny in hindsight. We’ll share those in the last post of the series: what didn’t work so well!

Special Needs Family Outings: Boldly go. Or not.

Special needs family outings Boldly go or not

For many people, summer is a time to escape the house to see friends, explore nature, visit local attractions and travel near and far.  Planning these outings is a worthwhile but complex undertaking for any family.  But having a child with special needs adds several more considerations to the decision making process.  Our family has been fortunate to enjoy several amazing trips this summer including day trips within the state as well as a cross-country road trip.  But in years past, we have also declined many invites and opportunities because we felt it was the best choice for our family at that time.

I want to share a little of our experiences both of declining and embarking on adventures because I know the enormous pressure special needs families face when making these decisions.  It can seem that there is no “right answer” when the family (and outsiders) wonder if “going” is reckless, “staying” may be overly cautious, and “going with abbreviated plans” leaves many people disappointed. Those outside of the special needs world usually don’t understand what goes into the special needs family’s decision making process, which can lead to misunderstandings or hurt feelings from those impacted by the family’s choice to stay or go.  And even from within the special needs community, pressure can mount when special needs families begin to compare or judge each other’s choices about venturing out of the house, state, or country.

I have three objectives for this blog series:

  1. To say to special needs families: Boldly go. Or boldly stay. Both options require courage, and you alone are equipped and empowered to make the choice.  The decision is so unique to your family and circumstance that it really can’t be compared to other’s choices or even evaluated from the outside.
  2. To share some of what goes into the travel decisions, for special needs families who may want to share this information with others to help ease those misunderstandings
  3. To share some of our own experiences of traveling and of staying- what worked and what didn’t, the comical moments and the hand wringing ones, and how our decision making is changing over time as we gain experience and as our children get older.

Also, those families who are preparing to “go” sometime soon might be interested in our previous posts on the topic of Travelling with the Medically Complex Kiddo, including a free packing list printable!  

Special Needs Record Keeping

Parents of medically complex children handle reams of paperwork- that which we review, sign, and much of it we are given to retain for our records.  It’s all part of our secret part-time job.  My rule of thumb for filing vs recycling is that if it can easily be found on the internet or in books I own (ie vaccination info, first aid, general parenting advice), if it’s an easily accessible record such as on the hospital’s online patient record portal, if it’s legal form letters (hippa, liability, institution policies) or if it’s not likely to ever be an essential reference (dme packing lists), then I recycle them.  This rule usually eliminates any information that isn’t especially helpful and specifically about June.  This has helped me pare down significantly the files I retain, but it still leaves quite a bit. After not quite three years of using this system, these are the records I’ve retained- the “short” stack on the left is medical bill records, and tall stack of files is the actual pared-down medical data on June, and the spirals are my own notes from doctor visits and hospital stays.

Special Needs Record Keeping

I found that June’s records alone were taking up a whole file cabinet drawer.  When I sat down to write a “concise” review of her medical history for a genetics consultation, I had to admit that at this point and volume of data, I needed to further organize it in order to make it useful.

Previously, I saved the medical bills in folders by year, which works well for  the annual schedule of our flex spending, health savings, and taxes etc.  But I kept all of the medical data in one folder (and then a second and then a third) filed chronologically, rather than splitting it all up by institution, year or subject. The reason for this bulk file approach, besides not having toddler-free time to work on filing systems, is that for a good portion of June’s early life, every service, specialty, and institution was delivered inpatient.  If I were to break it up- would a dermatology consult while inpatient go in the hospital file or a specialist file? Would g-button instructions from the hospital go in a hospital folder or in a surgical info folder? Would g-button instructions from the DME company go along with those hospital g button instructions (wherever those end up) or with the DME file, or with the hospital file since we received them while inpatient? On and on and on. So I just put everything into one file chronologically until that system became ridiculous, which is now.

I picked a hybrid organizational system for this data including a general medical data files separated by year- data which I further thinned- and specific files for organizations when they have enough paperwork to warrant it.  So the tower of paperwork has been distributed among:

-4 files of general Medical info: 2013, 2014, etc which includes anything not in the folders below; this tends to include timeline-relevant info on June’s health including pcp, specialists and inpatient

-Medicaid

-ECI

-DME

-Speciality pharmacy for Synegis

-Speciality pharmacy for Lovonox

-3 files, one for each nursing agency we’ve had the misfortune of utilizing

-My notes spirals

-Surgery photos, pictured below.  This includes her two trach placements, g-button surgery, larygotracheal reconstruction, a lot of bronchoscopies and various minor sedated checks and OR procedures, with each procedure netting between one and three of these surgery photo pages.

Surgery Pictures

The files are all manageable and easily referenced.  I think this system will serve us well for a while, which is good given that it took me a year to finally sit down and cross this off of my to-do list.  And the motivation for it- writing the “concise” review of June’s medical history- was well worth the effort.  Doctors are using to try to draw connections between her varied symptoms and history to see if a genetic syndrome might be present, despite no clear diagnosis from the exome sequencing.  But just as valuable to me is the fact that I have a copy of it in her medical bag and can quicky give any new professional a concise but thorough history of her so they can have a complete clinical picture.

The Home Nursing Analogy: Why we are reluctantly seeking some nursing again

Recently I wrote about why we declined home nursing for the past two years, and a little about the mammoth of a topic that is being awarded secondary Medicaid.  The fact that Medicaid requires us to use at least some nursing hours is a big reason why we are seeking it despite the long and varied list of reasons why we prefer not to.  There is a second reason, though, which can be illustrated with the following analogy for home nursing.

Home Nursing Analogy

Imagine that you were told that your young child would be involved in two car accidents every week for the foreseeable future.  The exact time of the accidents would be random and unforeseeable, and they would vary in severity.  However, the accidents would always occur in your own vehicle and on roads you are intimately familiar with.  

Now imagine that you are told you have the option to let strangers drive your child around in your car, a little or a lot– all the time if you’d like!  But they would handle those inevitable car accidents, in your car and on your roads, and tend to your child afterward for better or worse.  But don’t worry!  These strangers are licensed drivers of course!  Now, as far as how long they’ve been driving, whether they’ve driven a car anything like yours, or EVER been in an accident, who knows- that varies.  And they are completely unfamiliar with your roads and the traffic patterns of course.  What do you say? Would you like us to send someone to take a shift?

This is what utilizing home nursing is like for us. To explain in more detail…  For a while during the winter, June was having two emergency trach plugs per week (“car accidents”), some minor, like partial plugs, and some major (“varying in severity”) like full plugs or incidents when we couldn’t physically get a new trach in, during which June would nearly lose consciousness.  These events were always unexpected, they occurred at night, during the day, in the kitchen, in the car, in the backyard… But, just like “knowing your own car,” Greg and I always instantly know how June is doing by the particular sounds of her breathing, her behavior, the condition of her stoma and lungs, and it allows us to anticipate these otherwise completely unexpected emergencies (or “car accidents”) somewhat.  Just like “knowing your own neighborhood streets and traffic patterns,” we know by heart where all of her emergency equipment is located in the emergency bag and in the house, so no precious time is wasted fumbling for those things, and we know what environmental and circumstantial hazards June is likely to encounter that would make an emergency more likely.  And most importantly, we are her parents, and our presence is an irreplaceable comfort to June when these emergencies occur.

A nurse has none of these advantages when handling an emergency (or “car accident”).  A nurse is licensed by the state, but that is very similar to the general nature of being a “licensed driver” in this scenario.  She may never have handled a trach patient (“a car like yours”) or may have had only trach patients with very different circumstances, such as a patient who is immobile on a heated circuit vent and never has trach plugs.  As such, she may have never handled an emergency trach plug or emergency trach change (“car accident”) and therefore, even she doesn’t know how she will react.  (No kidding here– other parents of kids with a trach have shared that their nurse became hysterical, left the child and ran out of their home screaming and waving her hands, when the child had a plug and a difficult trach change.  Thankfully the parents were there, too, and they finished the trach change calmly in the nurse’s absence.  In fact, when looking for a nurse this time, I strongly emphasized the need to perform well during an emergency, because June has them frequently, and thankfully several nurses have honestly said, ‘In that case, this isn’t a fit for me.  I get jittery when a child is in danger.’)

SO!

You may say, “Wait, I thought this was a post about why you ARE seeking some nursing, not topping off the pile of reasons not to.” Well, hear me out.

My husband and I have been caring for June ourselves just fine for the last 2.5 y ears, “taking shifts driving,” so to speak.  The only times we have not personally observed and cared for her are for 2 hours while Greg was at my bedside when we had our 3rd child last year (and June was with her medically-trained grandmas in the hospital waiting room, ready to text Greg if he was needed), and for 45 minutes here and there during inpatient stays when we left a dedicated attendant at the bedside with June so one of us could go buy food or rest.  It has worked fine for us- it’s our normal, and we actually have a fun, silly and adventurous family life.  But I realize: we’ve been lucky. There has never been a time when we were both unavoidably unavailable. Greg has always been able to take off of work when I’ve been sick or in the hospital.  But eventually, there will be a time that, for some reason, neither Greg or I can provide the 24/7 monitoring she requires. And it’s also true that it is *healthy* for us to take a break “from driving” occasionally.  So, when that time comes, I’d rather have someone available that at least knows “our car” and “our roads” a little bit than not at all.  I’m reluctantly seeking some nursing, first, because it’s required, but secondly, because it will benefit June by establishing another care giver to ensure she has proper and safe care if we ever absolutely need it or in order to provide us some respite so Greg and I will have the endurance to provide her excellent care long-term.  

Still, ug.

Let the nursing adventure begin?

Secondary Medicaid: Our Story

Monkey Jump Medicaid

What?

Our daughter now has Medicaid coverage in addition to our private insurance.  I am writing about it for two reasons.  First, it is a link between my previous post in which I explained why we declined home nursing for two years, and my next post in which will explain why we are reluctantly seeking it again; our new-found Medicaid coverage is a major reason since our waiver program (see below) requires that we utilize some nursing.  And secondly, while the existence of Medicaid is common knowledge, and it’s often  alluded to in conversation in general and usually negative terms- especially in this time of political activity- I have found that most people (myself included) have a vague and inaccurate idea of what Medicaid is and who uses it.  So I’m sharing a little of our story in hopes that some may be able to relate to the insurance headache (part of that surprise job every special needs parent lands) and that I may dispel a few myths along the way.

Why?

So, I’ll start with why our daughter now has Medicaid in addition to our private insurance coverage.  After all, before having a special needs child, I assumed that people with private insurance would have no use for Medicaid.  I assumed that they wouldn’t qualify, either by virtue of having insurance coverage or due to the level of income that allowed them to pay for private insurance in the first place.  I assumed that the patient could access whatever care was needed, with insurance covering it as long as the family’s premiums, copays, and out of pocket max were dutifully met. As it turns out, these assumptions are not always true.  For a wonderful explanation from a fellow blogger and special needs parent, see the blog post Why Our Special Needs Child Has Secondary Medicaid by blogger AllThatHathLife.

Personally, the major reasons we sought Medicaid after going two years without it is that our primary insurance doesn’t cover everything that June needs, presumably because the private insurance company knows that kids with extraordinary medical needs/expenses are eligible for government programs such as this.  Something our caseworker told us way back in the NICU days has proved to be a very widely held assumption by the insurance companies and medical providers alike:”You insurance doesn’t cover this, but don’t worry– Medicaid will kick in.”  In fact, this is such a common assumption that early on in our journey with June, our private insurance company refused to pay claims for her until we provided proof that she did not, in fact, have Medicaid coverage.

How?

I’m told that the waiting list to receive Medicaid in Texas is about 10 years long.  But the state has several waiver programs in place which allow specific populations to have priority, or effectively skip the list.  One waiver program is for children with complex medical needs like June- the aim of which is to provide support which will reduce the amount of time the child spends in nursing facilities and hospitals, which will in turn reduce the overall cost of care for that patient.  (Win for the patient and family, win for the community as a whole which shares medical costs in both the private insurance “pool” and the government program “pool.”)

Where?

Where can we use Medicaid? That’s the question!  Another misconception I previously held is that Medicaid is widely accepted by doctors.  We live in the suburbs of a major city, and I was shocked to find that no one near us takes Medicaid.  I assumed that most physicians did, because in my experience, most providers in my own field (mental health) do; the feeling being that the comparative reliability of reimbursement (provided that you tough out the billing and paperwork learning curve) compensates for the lower pay rate.  Apparently that is not so in the medical field.  Finding that my preferred pediatricians did not accept Medicaid, I called down the list of nearby doctors provided on the Medicaid website.  The responses I got include:

“I’ve never heard of that doctor.”

“She no longer works here.”

“Yeah, that guy died like 5 years ago.”

So, like any special needs mom at her wits end, I took to the forums.  Every local parent of a trached child that I asked said they use a specialty pediatric clinic associated with our daughter’s hospital, which I never knew existed.  I finally got her signed up there, after a few conversations reminiscent of “Who’s on first?” with the nurse who explained that in order to see one of their PCPs, I needed a referral from a PCP, despite the fact that the reason I was calling was because we were not established with any PCP at the moment.  Also, the fact that our primary insurance acts as an HMO made it all the more fun when I discovered that the “doctor” we were- at long last- scheduled to see was in fact a nurse practitioner, not an MD, and therefore wasn’t eligible to be our designated PCP.  But I digress.

When?

As for when we applied and what was involved- applying for Medicaid through the waiver program is a long, detailed and convoluted process.  When June was in the NICU, the hospital started our first application process on our behalf.   After a 3-month process of interviews with caseworkers, many many phone calls, signing forms every few weeks in person and by mail, and having paperwork completed by our PCP, we were ultimately denied coverage.  This time we applied, we did all of these steps plus the subsequent steps in the process including having a caseworker interview us in the home, having a registered nurse interview us in our home separately, having additional paperwork completed by the PCP, paying out of pocket for June to be admitted and discharged from a local nursing home facility, then having a second round of paperwork for the PCP…..all over the course of EIGHT months.

So, that is our Medicaid adventure so far.  And, just a note, *our little monkey did not fall and bump her head.  But we do play that game a lot in our safari household, and adding that last line made me crack up for an entire day during this insurance chaos recently, so I couldn’t resist.

Declining Home Nursing

I’ve wanted to write this post- about why we declined home nursing- for a long, long time.  But it is a complex, hot-button topic in the special needs community, and honestly, even thinking about our brief 3-week experience with home nursing makes me exhausted. I am writing now because soon we may have a limited amount of home nursing again.  And I’m already exhausted by the problems that have arisen as a result, even before any nurse has stepped foot again in our home.  So, for parents of special needs children wrestling with the problems of having  home nursing versus the problems associated with not having it, here are the reasons that we declined it. In an upcoming post I’ll share why we are seeking some limited nursing after 2 years of enjoying not having it.  These reasons are personal, and they won’t represent everyone’s experience.  They are in no particular order below.  Some of these issues are more important than others, and not all of them are insurmountable in themselves; keep in mind we made our decision based on the entire risk/benefit picture as a whole.Declining Home Nursing

 

Invasion of our space

My husband and I are introverts. Being around people other than our little family- even nice, considerate people- sucks our energy away.  A great picture of introversion is here. I time and manage my social interactions very carefully so that I have time to recover. Having someone present in my home would drain me to the point of desperate need of recharging in isolation, and I don’t have the time or energy for this depletion and recharging cycle.

Affecting the dynamic with the kids

Most people would be surprised to find that Greg and I are very silly with each other and the kids. We make up songs all the time with ridiculous lyrics about what we’re doing or substitute the kids’ names in familiar songs. We wrestle and tickle and pretend to be dinosaurs.  We dance to rap music.  And one of my favorite parts of the day is in the morning when Miles wakes up in his crib, which is in the master bedroom attached to our bed; Rowan and June pile onto the bed next to his crib to say good morning, sing, pat him, and jump and roll and climb over across and under the crib and bed.  We spend a half hour just lounging and playing as I get Miles ready for the day. We don’t do these things if someone else is in the house; their presence changes the dynamic because they are not part of this silliness we share as a family.  It’s worlds colliding; it’s like someone staring at you while you eat.  I think it would steal the magic of the moment to pause and say to a nurse, “Wait in the living room while we do our good morning silliness tradition,” and, alternatively, we certainly won’t invite the nurse onto the bed for a pillow fight.

Affecting behavior with the kids

Every parent of a toddler knows that they behave very differently with an audience.  Having someone present in the house affects all of the children’s behavior as they dutifully test whether the typical rules still apply, and whether they can get a reaction out of the guest or a novel reaction from the parent.

Logistical problems

When we had nursing overnight, we had to put our two large dogs in the bedroom with us so that they wouldn’t bark or bother the nurse, and if they did bark, it wouldn’t wake any of the kids.  Having 150 pounds of snoring dog in our bedroom to trip over in the dark did NOT provide me with the restful sleep that night nursing was supposed to offer. Other logistical problems- where to park, where to take breaks, where to store “lunch” and how to prepare it quietly at night, the necessity of a landline to “clock in/out,” and storage of the nursing company supplies in June’s crowded room.  Also, the necessity of being at home when the nursing shift starts and ends is a huge logistical problem as well as a killjoy; since it takes 2 hours in traffic to get to our appointments at the children’s hospital, that means we would  need a four hour buffer around both the shift start and end times during which we couldn’t schedule appointments.  We also couldn’t swing by the ‘dinosaur museum’ down the street after an appointment or stop for ice cream/zoo/impromptu play date when the traffic stacks up on the way home, because we would need to shuttle the nurse back to her car at our house in time for her end-of-shift.  (I hear that taking nurses hostage is frowned upon, even if they are provided ice cream.)

Privacy and security issues

I am a very private person, and home nursing posed various challenges in this area.  First, neither Greg or I were comfortable walking around in underwear with someone in the house.  So I had to dodge sleeping-dog land mines and put on pants every time I wanted a drink or snack in the middle of the night.  I didn’t want to pump milk or breastfeed uncovered aside from around my little family, which amounts to a huge inconvenience when I was doing one or the other 7 times a day.  (I fully support the right to choose to do so uncovered, but I personally feel most comfortable covered.)  Since we were primarily using night nursing, which meant we were leaving our sleeping children unattended with a stranger, Greg and I installed cameras in June’s room, and neither the nursing company or a few of the nurses were comfortable with that (too bad!! and more on that in the nursing competency section).  I am very protective of my kids’ personal health information, and you would think that with all of the HIPAA trainings that professionals have, that nurses would not take pictures of my their patient with their personal cell phone, but no.  And lastly, having a stranger in our home unattended, Greg and I were conscious of protecting our financial information, money, checks, etc, which was challenging and a hassle to accomplish in our open-concept house.

Scheduling and accountability issues (Basically lots of problems and no follow through….feel free to skip to the next section for something more entertaining)

When we chose our first nursing company, I knew that the ongoing revenue available through home health often prompted fly-by-night, unscrupulous, or unreliable companies to pop up.  So I went through the list of local companies the hospital social worker provided, and I eliminated any companies that did not have a website and/or a working phone number.  THIS ELIMINATED HALF THE LIST.  Of the other half, only one company followed through with my inquiry for information, and they seemed good; they were national, had an impressive intro folder, met with me at the NICU bedside and gave June a promotional teddy bear.  I signed up with them, and then their customer service went to hell.  The person who signed me up passed my case- but none of my input or preferences- on to another person, so my initial nursing schedule was set up completely wrong; I had to send nurses home who had traveled from across town, and they subsequently declined to come back.  Nurse managers and administrators would show up 2 hours late for meetings with me.  The nursing company would NOT correct my schedule despite the fact that I called to correct it every day.  I had no nurses on the few nights I did want one (to get some extra sleep), nurses appeared when I didn’t want them, the company wouldn’t change my schedule to accommodate doctor’s appointments, and nurses sometimes called to cancel an hour before their shift start when they realized I lived on a far edge of town.  Also, this nursing company NOT ONLY doesn’t do face-to-face interviews with the nurses they hire (they just need to pass a few tests at a central testing depot) but they ALSO don’t drug test their employees at any point.  They said in regard to this, “We prefer to weed out problem employees in the real job setting because problems aren’t really evident in an interview anyway.  But if at any time you have any behavior concerns or suspicions of intoxication, you can call us right away and we address it.”  This is not a reassuring set-up for those of us who need *night* nursing when we won’t be observing the nurse.  AND, unbelievably, the company was surprised and uncomfortable when we told them we would be using cameras in the home in light of their screening practices.

Now….you’d think it was just this nursing company or office, right?  In the special needs forums, I see stories just like this for tons of different nursing companies in different areas.  And recently when we initiated the process to start nursing again, I obviously chose a different company.  Two actually.  Number One- which is highly recommended by local moms and nurses- took my information then failed to call me back. After a month I called and had a face-to-face meeting with an “advocate” in their company.  I provided him the documentation he asked for.  For a month, he failed to called me back.  I left another message.  Nothing.  I called another person, told them I was working with the “advocate,” and told the new person my story again.  Both the new person and the advocate failed to call me back.  Finally, I called a different nursing company, who took my message…and failed to call me back.  I called them back and spoke direclty to the “new patient” coordinator.  He failed to call me back.  Then, when we were at the part of the insurance process when we had to choose a company, I reluctantly chose ‘Number One’ since neither had called me back and this one was at least highly recommended.  SO. Insurance faxed paperwork.  No one called me.  I called and spoke to their “new patient” guy, and also told him I was supposed to be working with “the advocate.”  Neither that new patient guy or the advocate called me back.  I called back and found that new patient guy I spoke with had transferred somewhere else two days after we spoke.  I gave the new-“new patient guy” A TALKING TO.  Told him the. whole. story. again.  I told him I wouldn’t do business with his company except for the fact that the other nursing companies had done the same thing to me so I’m circling back through the list.  He said he’s very sorry, and I provided the paperwork he requested. AND THEN. He. didn’t.  call. me. back.

At this point in telling the story I typically get questions of “How can this be???” “Have you just gotten really bad companies??” “Are you being really mean to them on the phone??”  No, I’m not mean to them until they’ve screwed up at least 10 times.  And as I said, problems abound across companies it appears from global forum feedback, though some parents I know have had good experiences. Why are bad experiences so rampant though?  Maybe high turn over.  Maybe poor training.  Maybe because people in need of home nursing are usually guaranteed customers- they need the care whether the companies provide good customer service or not. I don’t know.

Nursing competency

This is the most entertaining, but most highly variable reason listed.  Many nurses, including my best friends actually, are wonderful, amazing, professional people.  I’m sure there are some wonderful people who work in home health. We might have had one or two good ones, but they weren’t around long enough for me to be sure.  I’m hoping that if we stick with nursing this time, IF WE CAN EVER GET IT STARTED, then we will find a good nurse or two who are a fit for us.  But one of the main nurses that worked for us our first time around….

…..constantly mentioned, out of nowhere, that he is a doctor in Belize and insisted on wearing a white lab coat to his shift

….in addition to claiming to be a doctor, he told multiple grandiose stories about his nursing career, accomplishments, and how much money he has, but the stories conflicted with each other and didn’t make sense

….was visibly uncomfortable handling the bags of breastmilk I had pumped and stored, and frequently implied that I bought breastmilk from Craigslist that might have HIV in it

….told me stories about the mother of his other patient, who he referred to as a “hoochie mama.”

….regularly remarked on how nice our home is as compared to homes where he usually worked, which he characterized as “beneath him,” and subsequently asked how many bedrooms we have and about the layout of the parts of the house he didn’t need to access

….he stated that he quit working for one family because they installed cameras, which insulted his professionalism.  I promptly explained that we were in the process of installing cameras.  He wanted to know if they only monitor live or if they record.

…after cameras were installed, at the end of his shift he said that June’s feeding tube had come unhooked and soaked the bed during one feed (this is a common accident called “feeding the bed”, though it’s a mystery as to why he didn’t notice it for the entire 1 hour duration of the feed if he was next to her bed awake), and he bluntly explained that he tried to hide this fact by putting the soiled sheet at the bottom of the laundry. “But,” he said, “I wanted to go ahead and tell you since you’ll see it anyway,” he said, indicating the cameras.

…he stated that the reason he works pediatric night shifts is that he “doesn’t like to work hard.” Or he also said he got wounded in the war.  And that this is the only way he gets to hold babies.  And that he was frustrated that no school in the US would admit him to an MD program and that he had to go to Belize for medical school…but as usual that detail was not relevant to the topic.

And keep in mind, all of this occurred over a three week period of employment during which he worked two nights a week.  So.  It was an eventful three weeks of home nursing. The topic of medical competency and professionalism is huge, and I have plenty more stories, both good and bad, of our inpatient and outpatient experiences from the last 2.5 years, and plenty  more to stay on the topic; this’ll do for our experience with *home* nursing specifically though.

Insurance insanity

I’ll go into more detail in the next post, but the final reason for us declining home nursing is that our private insurance company wouldn’t allow me to cut my weekly nursing hours down so that the limited shifts that my plan offers would stretch until the end of the year.  I either had to use all of my hours up with extensive weekly nursing coverage such that I would run out of shifts in the first 3 months of the year and then be without any possibility of nursing for the rest of the year, or I could forego nursing shifts altogether.  Is it at all surprising that I chose the latter?

 

So, WHY IN THE WORLD WOULD I SEEK TO GET HOME NURSING AGAIN?? you may ask.  I’ll tell you in an upcoming post soon.