learning to navigate the world, j-bear style

Tag: medical care (Page 1 of 3)

Without Words

J had a good but bad doctor appointment this morning.

We’ve returned to the GI clinic that saw him as a baby for help with his eating. He’s not gaining weight (again) and it’s just a struggle. His new GI doctor is fantastic. He has a cheerful disposition, is educated and understanding about autism and managed the to make a visit that was very frustrating to J as gentle as possible.

I could have talked to this doctor all day. It’s rare I meet a doctor like that!

Now, the doctor was fabulous but the clinic… not so much. The staff apart from the young lady who checked us in seemed like everything was overburdening, the nurses and assistants had no clue how to work with a kid dealing with sensory overload as J was and the building was HOT. Devil’s armpit hot.

Have I ever mentioned that J overheats easy? And doesn’t know what to do with it besides melt down?

Now pile that onto the fact we had to go for blood work and you realize we were destined to fail.

Picture if you will a closet in your home. Add to it some cabinetry and a table. Now stuff 4 adults and one screaming flailing child who doesn’t understand what’s happening into that closet. Turn the heat up to 90.

Then ask one of those adults, who has had some training, to get blood from the child.

This was what happened to us. It was HELL. The first phlebotomist was a damned nightmare. She DUG IN HIS ARM. Repeatedly. He was howling in sheer panic and I could not blame him. Then she complained she couldn’t get much and marched out. Thank God for the tech she brought back with her… That woman could get blood from a stone. She had him finished in no time. I wish she’d been the first to see him!

So after everyone involved lost 15 pounds of water weight we were done.

We went to Build a Bear, visited a play area, got donuts and came home. I am toast.


The title of this post refers to something that happened in the waiting room.

J does not sit still in waiting rooms. He moves around, stims, searches, explores. It is just how he operates to settle himself in an environment of uncertainty. My job is to make sure no one else gets bumped about. Today, he noticed a little girl who may have been close in age to him. She was in a stroller style wheelchair and smiled every time he looked her way.

He smiled back when  he caught her look and went over to sit beside her. Neither said anything. Neither needed to. They made a connection without words and merely enjoyed the presence of one another.

People spend a lot of time stressing “making” these kids talk in a conventional manner. I feel sad for them. They must not see how much they communicate without needing a single spoken word.

Digestive Fail

That stomach bug that’s going around?

It struck with a vengeance yesterday.

Now, little kids and illnesses that cause digestive fail at either end of the process are just a bad combination to begin with. It’s even more scary when the little one in question cannot adequately communicate what’s going on. He knew he felt poorly, but had no way to point out things were bad until, well, they were bad. Thankfully we were at the bathroom sink when the first sick struck but oh my stars.

It feels alarmist to call the doctor whenever he hits an illness like this, yet let me go back to a tired rant I often make: My son only drinks milk. Can you see how this can be a very awful thing when one is suffering a stomach bug? Yesterday morning and early afternoon was downright ugly thanks to this fact… But then, then he stopped drinking. He stopped producing wet diapers. He went from “mildly ill” to “ER visit” in hours.

We are blessed to live in a wonderfully thriving suburban area. There is an amazing ER not five minutes away that has a fantastic pediatric staff. The nurse there took in what was going on, understood that we had sensory issues to go alongside all the illness, and between she and the doctor put a plan in motion to get him on the mend withOUT subjecting him to the torture of needles. It began pretty rough, for the only zofran they had to give him was in dissolving pill form and my little gagger, well, gagged. He managed to keep it down though and within two hours was asking for milk. Milk that he kept down.

However, they sent us home with those dissolvable pills. What a nightmare! J’s gag reflex is so overly sensitive there’s just no way to allow them to work. He made himself so sick on one in the middle of the night that I just dissolve them in a little water and deliver the medicine via syringe. It’s imperfect, but it seems to be working.

Now little man is sitting watching a Thomas movie (of course) and being more like his usual self. It’s scary to see him so sick that he just doesn’t move. He’s constantly in motion, a still J is an aberration and a half and yet he wouldn’t even get up to walk out of the house yesterday. I swear it feels like I did little more than cuddle him from yesterday morning til this afternoon.

I never thought I’d miss his screeching but hey, anything to prove a return to our brand of normal, right?

The Unbearable What-Ifs

So, to those catching up with the story of our intrepid hero J, he has had staring spells since he was just the smallest of guys. This isn’t just “oh he’s off daydreaming”, this is he’s asleep with his eyes open and completely checked out. The light is gone from his gaze when it happens, it’s really disconcerting. They never last longer than maybe 30 seconds but still… They’re a thing. They don’t happen daily but when they do, they startle the dickens out of me.

His developmental pediatrician suggested we follow-up on these by getting a 24 hour EEG. This means hooking little man up to many leads and being in patient. So that’s what we started out with at noon on Monday. It is now almost 8pm on Tuesday and we are finally home. We got a sort of episode on the study and it showed nothing overtly abnormal, so they cut us loose. The full study will be read over the coming weeks because, hello, that’s a lot of data.

Anyway, as you sit in a hospital room watching a machine take measurements of things you have nothing but the most vague comprehension of, your brain goes strange places. What if he did have a seizure disorder? What would this mean to our lives? What’s does this mean for his future? What if, what if, what if…

But no matter what, it all came back to the same thing: I was still going home with my sweet boy. Overall, my son has rude good health on his side. If he has a seizure disorder of any shape, I’d still have my son. I’d still have my little gregarious bear and we’d face whatever was handed us head on.

I saw a poem entitled “I’d Still Choose You” that was written about parents of special needs kids and their children and gosh… Maybe it makes me a hateful person but I barely skimmed the poem before getting so angry I closed the screen. There is no magnanimous decision involved in being a parent to the child you were given. This is a relationship you enter into blindly. There’s no kicking the tires, there’s no checking the teeth, there’s no Kid-fax before you receive your son or daughter, even via adoption no matter how many things you go through – You’re either which way entering into a relationship with another human being, and we’re a bunch of constantly changing, constantly evolving creatures. I signed on to love the child I carried whatever that may call for. I entered into that whole heartedly, and continue to be whole heartedly in that mindset to this day.

I signed up for Jacob. I did not know what that entirely meant at the time, but I signed up as enthusiastically as a child goes after sweets. I get no major awards for this, I get no special head pats from God or the universe… I get him.

There’s nothing in this world better than that. Anyone who has seen his humor, his sweetness and just the light he exudes as he wanders through this world can plainly see… That’s a pretty awesome gift. I’m pretty lucky, really. Even when it’s hard.

If you steal pictures like this you aren't nice

We make long days look fun, right?

Bye Bye, Cast

So it’s gone.

Today, at 9am EDT, we bid a not so fond farewell to J’s purple cast.

There was a lot of screaming and fighting involved. The poor kid, this appointment was the stuff of all of his nightmares. Let’s list them:

  • Flourescent lights? Check.
  • Strangers talking loudly to him? Check.
  • Being laid flat on his back staring at the aforementioned lights? Check.
  • A machine that combines the sounds of a vacuum cleaner and a chainsaw? Check.
  • Being pinned in place while that’s being used? Check and double-check.

This was a recipe for fail, and fail it was.

Now, I cannot fault the tech and nurse that removed the cast. They were doing their job and, to their credit, they spoke to J directly and with great empathy despite the fact he clearly was not following what they were saying or following their instructions without my moving/directing him. The moment he got on the table panic set in and it was a fight from beginning to end.

Cast removal? Not for the faint of heart. However, they got the silly thing off and besides being a little grimy and rough his arm looks great. He’s had it scrubbed twice now and I’ve massaged it with Dream Cream so his skin is returning to softness. He braved two quick x-rays and finally I could see where the break was when the PA showed it to me. He healed beautifully and, barring any continued favoring of the arm beyond the next couple of weeks, he’s back to standard J-bear hijinks.

He was so upset through so much of that process that I was worried he’d throw up. Thankfully he began to calm as we were leaving and was quieter as we marched down the stairs to leave. Once we had some treats at home (J-bear still does run on Dunkin’) and relaxed I laid him down for a nap…

That lasted til 3:30pm. Which I took with him.

Man did we need that.

He’s super relaxed right now and bedtime should, I hope, be soon. We’ll see how things turn out.

And pray he doesn’t ever need a cast again.

Stupid Colds

So I learned something new.

The puking that I was likely hypersensitive over may actually be his warning sign of getting a cold.

Could there BE any more disgusting a warning sign?

I shouldn’t ask, that’s like a challenge to the universe. Dear Universe: I’m stocked up on messed up stuff right now. Sincerely. Your efforts are noted and I am in sufficient awe of them. Please proceed no further in this direction.

J has a cold. Now, I can  handle a lot of the stuff that comes out of him. I have gone through puke storms, I have seen him through major digestive fail, I have dealt with pretty much anything his body can throw at me.

But snot? Oh my gosh it’s like a non-stop nausea inducing disaster over here.

Every time he sneezes, Mount St. Snot erupts all over the front of him. I am only barely exaggerating. This is SO GROSS. Nothing makes me gag more than this stuff yet I have to calmly shuffle over, use tissues strong enough to wash pavement to clean his face then carry on with our day.

Meanwhile all I want to do is sit in the corner gagging yelling “EWWWW” while doing the cootie dance.

How can one small person create so much gross snot? More importantly how can they do it and still find the energy to do anything else?

It’s going to be a few long nights of Tylenol, Benadryl and seven million tissues in this house. At least I remembered to crank the humidifier for him so his nap didn’t leave him waking up crying. Yay me?

I need a vacation. 😛

Medicaid Info for MA Families

I know there’s a few MA families who read this so I thought I would put this out there.

Children who are diagnosed as having autism are eligible for CommonHealth, the disability arm of MassHealth. This can help you with medical co-payments if you go to providers that accept MassHealth, hospital bills, medical visits… It can help with a lot.

There is a secondary program that you may apply to after a child is approved for MassHealth that assists families with paying for their child’s private primary medical insurance. It is called the Premium Assistance program and it can be a godsend. It is via this that J is able to remain with the OT and Speech people he loves so very much.

Here’s how to apply:

For MassHealth visit here, click “apply” on the right hand side of the screen and follow the instructions provided: http://www.mass.gov/eohhs/consumer/insurance/masshealth-coverage-types/masshealth-commonhealth.html

Once approved for MassHealth, which can take a few months, apply for Premium Assistance by calling 1‐800‐862‐4840 and staying on the line. State that you are calling to see if your family qualifies for the CommonHealth Premium Assistance Program and the agent will assist you from there. This process was, to me, so very much more easily handled than the initial MassHealth application. You can read more about the program through a brochure offered by the Federation for Children with Special Needs: http://fcsn.org/mfv/publications/mscpa.pdf

My experience with the application process for MassHealth involved receiving a lot of confusing paperwork initially. If your family is making over 300% of the poverty limit they will send you a rejection for everyone else in your family but the child for whom you are applying for disability coverage. You may even get multiple letters stating this. Don’t panic. Whenever you have questions or concerns, there’s a number on the letters to call and I found the agents to be efficient and helpful for the most part. Out of the many times I have called only once has someone been rude to me. Given that dealing with government agencies doesn’t always go well I consider that a great success rate!

When you are initially approved for MassHealth you may be required to pay a premium. This premium, for me, went away when Premium Assistance kicked in. Does it go that way for everyone? I’m not sure, but the premium I was told to pay would have still been worth it when you compare what I would have otherwise shelled out-of-pocket for hospital bills and medical co-pays that MassHealth picked up. If you wish to use CommonHealth for pharmacy benefits keep in mind they have to get all prescriptions pre-approved before a pharmacy can fill them under those benefits. It’s not something I’ve done yet as J is not medically involved enough to need it but I will come back and edit this post when or if we do experience the process.

I hope this helps someone out there. Early Intervention showed me this whole process and was amazing in leading me through it. Thank you, Virginia and Loretta!

Return of a Problem?

Yesterday we did something awesome that was mentioned on Facebook but that I will go into detail next week. Suffice to say J had a lot of fun and we made a new friend.

On the way home, something troubling happened. This kid is, in general, a great car traveler. He hunkers down in his seat and watches the world go by. He’s gone on very long car trips many a time and just plain done great on all but a couple occasions. The lesson was learned the hard way that rear facing and him do not, for any reason, get along and once that was remedied he’s mostly had great success.

So why then did he vomit, violently and suddenly, just as we were pulling into our driveway yesterday?

Yeah, I know, it’s “just puke”. Yet… it’s not. Remember, this is the child who was routinely vomitting several times at points. Having him only puke once a week was a relief. This is a major component into why his tonsils were removed: his vomitting seemed primarily caused by gagging since they were overly big tonsils. He could gag on water sometimes, it was beyond frustrating. The tonsils came out on June 3rd and apart from just after surgery (anesthesia is mean) and a bad incident with too much dairy on a 100 degree day (baaad)… There’s been no sign of recurrence.

So either he has a bug which I cut off at the pass with a dose of zofran last night, it was just a fluke, or there is something going on. He has been having staring episodes again which frightens me every time they happen.

Back to calling doctors I go. This merry-go-round, it is NOT fun.

The Stages of Coping with Casts by J-bear

This is how this week has gone with J in terms of him getting used to having his (pretty purple) cast on his arm. Thoughts transcribed/guessed at by me obviously:

Stage 1: Anger

“This man is putting a thing on my arm. My arm hurts. HE IS PUTTING STUFF ON MY ARM. THE WORLD SHALL KNOW MY WRATH!”

Stage 2: Denial/Ignoring

The arm hangs limp and heavy at his side. “If I do not move it, this abhorrent thing is not really there.”

Stage 3: Frustration

“I WILL SWING THIS WILDLY TIL I AM COMFORTABLE”. Beware of accompanying flailing, especially while he is trying to sleep.

Stage 4: Indignant Acceptance

“If I chew on it mom will drop whatever she’s doing and come help me, so I will take advantage of this stupid thing.”

And there you have it. My week in a nutshell with a J in cast. He’s actually using the arm now these past two days, which is better than the “hanging there like it’s dead” stage he was in. He will move it to keep himself comfortable instead of leaving himself in awkward angles that caused nothing but pain. He even will attempt a high-five, which is funny because his elbow is cast with a slight bend.

Thank you to all I hold holy for the invention of “active casts”. I cannot wait to put this stinkbutt boy into the bathtub tonight and let him get his crazy out on a little water. He truly could use a dip in the ocean or a wave pool but we’ll take what we can get.

This is my life right now. We’re making the best of it and I’m still trying to get a good picture of him awake and in his cast to share with the world. The purple cast has to be remembered forever and always, after all.

Me and 2013 Aren’t Talking

In fact, I might just outright shun this year at the rate it’s going.

Last night, as he’s prone to doing, J jumped on the bed. Well, more accurately he flung himself down on his back with as much physical force as he can muster onto the bed. A bed, mind you, that has a pillow top and is covered with soft and squishy blankets and stuffed animals. The only hard spots on this bed are the headboard and wall behind said headboard and he was nowhere near them.

Yet he broke his elbow.

Did you know people do this? That children do this regularly? Cause I didn’t. In the ER the term nursemaid’s elbow was bandied about and that’s what I figured it was after a quick consultation with Dr. Google. Lo, never could it have been so simple! He has a supracondylar fracture. It was hazy to see on the x-ray but yep, it’s there. The swelling on his arm is tell-tale.

This child is one who rarely shows signs of being in pain. I have heard him scream like he did last night exactly once and that was when an inept phlebotomist dug in his arm pretty harshly to find a vein for blood work. Usually needle sticks only briefly phase him and standard little kid crash and bang type stuff is quickly forgotten if it is noticed at all. He showed pain after surgery, obviously, and boy has he shown feeling pain with this elbow thing.

What kills me the most is that it was his little body’s desperate need for deep input that brought on this whole mess. I feel like a failure for not being able to quite meet that need right now because hey, I’ve been spitting out broken organs too. This is something his service dog will so very much help with because J won’t have to jump. His dog can lay across his body. His dog can run and play outside with him. His dog can lay his head on J’s lap… His dog can be the extra arms and the extra love and attention this special little boy so dearly needs.

On the uptick he chose to have a purple cast from all the colors he was shown. It is an active cast, so he can get it wet without worry. I did not know such technology existed but am I ever grateful for it! He can bathe and just be himself without worry of the condition of the cast. He’s not going to be hammering in nails with it or anything but it’s nice to know he can enjoy normal, beloved activities during the rest of his short summer.

Now, at this point, mama bear is going to go reconsider her long-held abstinence from alcoholic beverages for a little while.

Having a Sad

Hey, internet: I’m having a sad right now. Hear me out?

I’ve mentioned before that I live with Post Traumatic Stress Disorder. It is an intense, complex thing to live with and it is something that may always be a spectre hovering over my life. I am not secretive about having it but I am selective on letting out the details as to why I have it.

This leads to today’s post.

At least three times at various medical points of care in the past month I have been asked why I have PTSD. There has never been context to this beyond exploring my medical history. It’s never been couched as a concern to make sure that my medical care did not cause a triggering event to it, it’s just been bluntly thrown at me and shaken me badly enough that I am sitting here writing this on the fly before I go pick up little boy.

This isn’t cool, people. You wouldn’t ask someone with depression or whatnot why they have depression or what have you. You see it on the page, you acknowledge it, you move on right? So why is it okay to ask someone with PTSD why they have it? Isn’t that in and of itself inviting a reopening of traumas?

I have enough struggle dealing with professionals in these capacities as it is. Let’s not make it any harder than it need be, okay world? Please? Thanks.

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