Category Archives: Hospital life
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:
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!”
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.
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.
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.
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
-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.
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.
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.
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.
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 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.
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.