J-Bear and Me

learning to navigate the world, j-bear style

Tag: medical care (page 2 of 3)

Ni Hao, Internet

Yesterday, J visited his ENT for his post-op check up. He has healed beautifully, which is awesome to hear, and unless something different goes wrong or he has issues down the road we are discharged from the ENT’s care.

This is good to hear because despite the fact the ENT is a great doctor (Dr. Doolittle, he has offices in Winchester and Woburn) he scares the daylights out of me. It is just the unfortunate side effect of his build and demeanor. He’s not gruff or anything, I just don’t know him, can’t read him and immediately perceive him as a threat. Sucks but that’s reality. 

J has no such qualms. Despite the fact this is the man who operated on him, he was completely cool with office visits and even for a brief moment opened his mouth on his own for the doctor to inspect his throat. When the doctor said “farewell”, my non-verbal son answered him with a firm “ni hao” and then marched us out of the office to continue with our day. 

Ni hao is Chinese for hello. There is a little cartoon called “Ni Hao, Kai-lan!” that is apparently a thing on Nick Jr. He’s seen bits and pieces and this is what he took away from it. 

“Non-verbal” is such an odd situation to try and explain to other people. They see a little boy who makes a lot of noise! He says a lot of words, or approximations of words most of the time, and he sounds like he’s carrying on fantastic conversations. He mimics the cadence of common conversation beautifully. He can parrot a lot now, but what people who don’t spend significant time with him miss, through no fault of their own, is how little of what he says is functional. Help, please, thank you… Those come on a regular basis and with purpose. Bye-bye is pretty solid too, but the words that get used appropriately come and go with the wind it feels like. School will be a godsend for him as it will reinforce structure and language skills but for now it’s all a crapshoot.

It’s pretty amazing to me still how expressive he is. You can never mistake his mood. I’ve written about how he has a face like glass before and I love that about him. That coupled with his wicked little sense of humor keeps things lively. He has also learned to turn those big grey eyes up at strangers to melt their hearts before they can think ill of anything odd he’s doing, which works for now but I fear the day it begins to fail him. 

Hopefully that’s a long way down the road.

Anyway it’s about seven hundred degrees here and ants are attempting to take over this slum apartment so off I go to kick some insect butt. Wish me luck.

The Wonderful World of Food

Subtitle: Peanut Butter and Jelly or Yogurt Tastes Best at 4am

Not that I am biased or anything but I think I have a pretty awesome little boy. I have thought this since the day he was born. If you have ever been in range of his big grey eyes and his heart melting smiles, I bet you’d be singing the same song or close to. He’s just got that way about him.

Something he has not had about him is a strong appetite. This is a child who was diagnosed with Failure to Thrive at 6 weeks for what we later learned to be a gluten intolerance that made breast milk just make him sick. He had lost weight so quickly that taking the time to do an elimination diet wasn’t in our cards, so to formula we turned and suddenly he was more mellow, gaining weight and drinking down formula normally.  He sucked down his bottles and, as he passed 15ish months of ages, he turned to sucking down milk. Food held only minimal interest, though he did try various things and eventually settled on a very few favorite foods. 

Now, as he began taking solid food, we not only learned the gluten intolerance existed but found that he gagged easily. He gagged often. I have joked before that the carpet in this apartment in which we dwell is vomit colored but there’d been so many times to test the truth of that that it makes me exhausted thinking about it. I own a carpet steamer because vomit happened so regularly. This is why he went to the ENT to begin with, this is why he had his tonsils and adenoids out. 

Now, we knew the surgery would likely cure the snoring but we only suspected it might help with the gagging and eating.

Boy were we in for a surprise.

Somewhere in his recovery process my son has learned what it is like to be hungry and not just that, what it is like to eat easily and be satisfied. It does not hurt him to eat now, though most of his diet is still softer foods. A week and change after surgery, he was blowing through 3+ peanut butter and jelly sandwiches a day, multiple bowls of yogurt and anything else he felt comfortable swallowing. This involved a lot of chocolate munchkins in those first days. 

Is this how toddlers are supposed to eat? Is this what the elusive “normal” people talk about is like, at least in terms of little kids and food? It is wild to me! He would barely finish one sandwich before surgery! Maybe a few graham crackers and definitely a bowl of cereal and a bowl of yogurt each day plus 6+ cups of milk. Oh, the milk we would go through. And now he’s doing 4-5 cups tops a day… 

This is all just so expected yet not. He just seems so happy to try and eat, and so happy to do so with ease… 

Part of me hurts to think that for the first years of his life he had such a discomfort that he could not voice. No one wants that for their child. I am grateful however that at least part of that discomfort has been addressed and will hopefully be able to open up and even wider world of food to him.

It’s either that or I need to start buying stock in Stop and Shop, Yoplait and Welch’s since the bulk of his favored foods comes from them and we’re going through them in quantity!

Medicating a Bear

When a family has their first child, they should be given the option to take specialized training in how to safely and effectively give young children medication via humane darting.

I’m only mostly kidding.

J needs to take pain medication/anti-inflammatory every 4-6 hours as needed. “As needed” has been “get that gross crap down his gullet every 4 hours on the dot or all hell will break loose” since last Monday, as expected. Medicating a toddler is as easy as medicating a feral animal who hasn’t been tranquilized. I truly do feel like I am taking my health and safety in my hands sometimes.

J is 39 inches tall and 34lbs (maybe a little more now). He is all arms and legs and despite looking like a little scarecrow this kid is all muscle. You can tell this immediately at medication time as he seems to sprout four more limbs and just attack, full on. Every limb is flailing and until last night, they were all sharp and pokey (thanks nail cutters for saving my face). Every square inch of his body seems involved in the single minded mission of “avoid the medicine that helps me be able to function”. 

He is given his medication via oral syringe. I generally can get it into his mouth then massage his cheeks til he swallows but there was a short time there where I would end up with most of it drooled back onto every handy surface. We have now added liquid Lortab to the array of scars upon the furniture*. Emergency measures were enacted. Suppositories were given instead.

This kid was livid at the oral medication, can you imagine how that change of pace went over? I bet you’re correlating strange sounds heard in your home over the last week with howling that just must have been him over this indignity. 

So, in all honesty, I’d be absolutely down for those lessons in darting. If I could just dart him while he’s mid-play he’d probably only be livid for five, maybe ten seconds before returning to play and I wouldn’t have to worry about pain taking over his world and turning him into a total terror rather than the mild, goofy terror he generally is.

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* Everything gets cleaned but hey, all the furniture in this living room has been through hell and back since J’s birth. Also, Lortab is only busted out at night. No one likes to see a little kid hopped up on goofballs all day.

Post Surgical Child

As I wrote before, J’s surgery went well. Recovery? It’s like pregnancy and childbearing – read all the books you want but be very, very prepared to have everything turn out precisely against what you read.

It was a standard tonsillectomy and adenoidectomy. He did not have such grossly mutant tonsils and adenoids that he’ll be a legend in his ENT’s office for years to come but they were problematic, so out they came. The surgery was about 30 minutes total and most of that time was apparently spent placing his IV. They had to place it in his foot, which was a blessing and a curse: blessing that he didn’t easily always see it and therefor didn’t pull at it, curse in that when he did see/feel it, it hurt that little bit more it seemed. I was kind of a mess through the morning of his surgery both from intense nerves and from being a ding dong and forgetting to eat/drink. Seeing him go under with the gas was brutal but the nurse anesthetist that was on duty was hands down amazing. I could not have left my son in better hands than that man, the ENT and the nurses present. 

He came into recovery expectedly unhappy. The post-op nurse saw to his pain needs and he sat up stock straight, reached for his cat (who went through surgery with him) and snatched her up like we’d been trying to sell her away from him. Then he laid back down and very soon blessedly slept. The time in the recovery room was long, too long it felt like, but when we got up to the pediatric unit it was for okay reason as he’d been given a private, isolated room set apart from the general noise of the floor. 

Pain management has been our worst complication. Tylenol could not cut it alone those first days and he refused to even consider eating or drinking. The first couple of nights post surgery he was vomiting off and on until they said “why don’t we give him zofran?”. I’m just his lowly mother but good grief I was frustrated at that point! It should have been given long before, just to keep him comfortable! The pediatric on call physician was hilariously awesome though and treated J with such incredible understanding and dignity. 

Then the days just wore on. He would not drink until Thursday and even then, it was a struggle yet he would eat! He would eat chocolate donut holes! He would eat peanut butter and jelly! Just … not drink his milk?

Never let it be said that anything about this child is typical. Ever.

He came home Friday and has been off and on with the whining ever since. It’s been a struggle to nail down how to effectively manage his pain but after several episodes of having his tylenol or lortab spat at me (nice) suppositories were procured and the rear door method was employed. Effective? Yes. Dignified? Not on any planet. Strangely, he’s been more cooperative about taking his medicine by mouth this afternoon. We’ll see if he remains so.

Lessons taken from this? 

— Never underestimate the stubborness of a singularly determined little boy to get what he wants

— Speak up when in the hospital, cause sometimes you get forgotten

— Realize that while your child may sleep in the hospital you plain and simple won’t sleep much and if you do sleep, it won’t be well. It’ll be an hour or two here, an hour there, and most of it will be the most uncomfortable sleep you’ll ever get. 

— Bubbles cure everything. 

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this happened but we’re slow to drink…..

….. except chocolate milkshakes from Burger King.

My son runs on Dunkin and BK, folks.

Remodel Eve

It’s the evening before the great Tonsil and Adenoid Eviction Event and I am not even sure what the heck to do with this, that and the other thing.

I know what I need to throw together for the hospital, both for himself and myself, and I know to charge All the Things as well as get the chargers together in a place I can get them into our bag easily. 

Tomorrow morning will be hard. He wakes up and immediately wants his milk and cereal. I have to make sure the cereal is put away, the bowls out of sight and no milk cups hanging around in the fridge. He’s going to cry and it’s going to hurt that there’s nothing I can do but after he gagged and vomited again tonight (on a food he loves and never has trouble with no less)… This is a necessary evil. His body and our carpet can’t take it, even if the carpet is conveniently vomit colored already.

Okay, it is dark vomit beige but still. 

This will be what this will be. Kitty is ready. Lovely J has no idea what is truly coming, which has me unsettled and disturbed beyond words, but we have to bear up and get through.

Sorry for the stupidly dramatic build up to what is ultimately a minor and routine surgery. There’s something about living life with Sir Jacobly Mudbutt Pickleface that just makes things that much more than they usually are some days.

Wish us luck. I’ll update when I can. 

The Heat Is On

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if McDonalds fries offend, imagine that’s an organic potato stick!

So here we have a J-bear in the wild, freshly shorn and prepared for intense summer weather. I anticipate he’ll be non-sweatball for exactly 3.4 minutes longer than he would have with his fabulous thick tresses but sometimes, psychosomatic solutions are what has to do.

Right now, as I type this, it’s not too hot yet but I know I’ll be a grumpy, grumbly mess by tonight. That’s how I roll. I am not one of those people who manages being in the hot too well. I have been known to faint. It’s a fabulous trait, but if all I have to suffer of heat for a the next month or so are these three days well… I will suck up, deal and move on.

Yesterday afternoon I spoke with the pre-op intake nurse at the hospital J will have his surgery at. She was a lot of help. She explained some of what will happened, listened and questioned very keenly when I mentioned J’s special needs and answered everything I had to ask with great care and clarity. He will be allowed to take his beloved Fat Kitty in to surgery with him and he will only be just with Kitty during surgery itself. They will spare him from suffering through the placement of the IV by doing it after he’s under anesthesia. They will understand, before we even go in, that he will likely fight the IV and blood oxygen monitor upon waking and are prepared for that. 

Everyone’s biggest worry right now is him screaming/crying. It’s a legitimate worry. His surgery is on his throat after all and him wailing is not going to be anything good for anyone. However, he doesn’t tend to talk when he’s upset – he cries. Between that and the fact he doesn’t drink anything but milk – a problem because post surgery they want you to ingest a clear liquid to make sure it will go down and stay down – he is a likely candidate for an overnight stay. They won’t decide that til recovery on Monday but planning for the possibility seems like a good idea.

All of this to worry about and it’s going to be devil’s armpit hot? My life can be so exciting some days I just can’t stand it. 

Today though, today we have group. Group is good. Group is great. We also have OT at home this afternoon and I am praying that we don’t melt the OT. 

Go forth and stay cool, people.

Gettin’ Real

It is one week til surgery for J and crissakes you would think I was sending him in to get bilateral hand transplants or something else intensive and crazy.

I’m not saying a tonsillectomy is nothing but we’re not talking open heart surgery here.

So why the hell is this such a subject of near panic for me right now?

This is my second entry about it. That should raise red flags, right? Mental state instable, get brain relaxer, stat … or something to that effect.

The way I grew up you always had to think two, three, twelve steps ahead in terms of trying to predict how things were going to go. This was a pure survival mechanism. If you couldn’t anticipate disasters before they happened the world turned into a very violent place for you so I became all about acting preventatively to stave off ill effects. It’s a trait that I still carry and a trait that while it makes me a very good customer service agent it makes me a horrible person to live with sometimes. I get so focused on crisis management that I fail to realize that I am planning for a crisis that is likely not about to come to pass.

This is what I am doing right now with J. 

I saw the weather forecast for the week and saw that it was going to be very, very hot going into the weekend and panicked. As New Englanders, our homes, particularly the older ones, are not prepared for hot weather. Now I am all “I have to make sure the portable AC works”, “All the fans have to be in the windows”, “The beds need extra sheets and maybe there should be extra sheets for the couch for if he’s sweaty”, “Maybe I should try to get him to drink a different liquid that’s not milk”… 

And on and on crazy brain went, running off the deep end.

I think talking to the nurse during the pre-op interview on Friday will help because I can ask all the questions I may want or need to. I can take out my crazy brain on this poor, unsuspecting soul and get a better understanding of what’s going to happen and more importantly what I can do for J that I am not already planning on doing. We can discuss the likelihood of him staying overnight, which his ENT said was a possibility, and I can ask that a particular anesthesiologist not be allowed near my son after the hell he caused during J’s birth. 

I think at some point before Sunday night I need time to just sit and breathe or I might be a total disaster come Monday and J needs me too much for that to be okay.

Mama Rambles about Worrying

We all have our days.

Last night, as I lay in bed, all of the “what ifs” surrounding J’s tonsillectomy hit me like a ton of bricks. There were questions from the autism perspective, questions from the little kid perspective, and questions from the “I have an anxiety disorder and trust issues and this is freaking me the heck out” perspective. 

Then this morning I had a bad blood draw at the very hospital he will be cared for at* and all hell broke loose in my brain.

It is hard to trust strangers with the care of my child. I have been forced to learn how to, thanks to Early Intervention and all his various therapies and I am grateful that I have been this early. I cannot imagine facing kindergarten in a few years without this background. They have shown me that many professionals are just that, professionals, and that some of them can in fact care about my son almost as much if not exactly as much as I do.

How do I trust people who are going to put him under anesthesia though? Who are going to do something that will cause him pain? How do I soothe the pain of a child who cannot articulate anything of that nature to me in an effective manner? How do I convince him after surgery that it is “safe” to drink his milk, that it’ll be okay to try it even though it hurts? How do I make him not panic about his IVs, and how do I help him wake up without being terrified to find himself in such a strange circumstance?

How do I let my son go into the operating room without me. I cannot hold his hand in there, my only comfort through so much of what we’ve gone through, and selfishly it’s killing me inside. I have a strong sense of faith and know he has at least 3 beautiful guardian angels to look over him through this but I am scared. I am scared witless. 

And I only have a scant couple of weeks to cope with this fear.

I have to figure out how to be strong enough not to break down entirely on him that day, fighting my PTSD enhanced instincts to protect him and frankly run as fast as fast can be from that hospital that day. I have to figure out how to cope with the fact that his doctor, while a great man and great doctor, scares the wits out of me through no fault of his own. His height, build and manner of being sets me on edge immediately and that helps no one. 

I have to make a plan to keep Miss Kitty close to me and to be right there the second he gets out so I can be right there holding his little hand as he awakens. He needs to be able to see me and Miss Kitty and everything he loves so I pray he doesn’t panic.

Anyone know how to make surgical scrubs for a fat stuffed cat?

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*The bad blood draw wasn’t the tech or hospital’s fault. It was a convergence of bad luck between fasting too long, being dehydrated and having my anxiety set off by my request to be stuck in the arm rather than in the hand being thrown out the window due to bad veins. Was what it was. This hospital has given myself and my son exemplary care.

Super Exciting AWESOME News (and less awesome news)

So the less awesome news first: Tonsils will be parting ways with Jacob on 6/3. It is what it is. I feel the benefits far outweigh the down sides to the entire decision and we cannot effectively address his eating issues til the physical issues are managed. So, that’s scheduled, moving on!

A few weeks ago I wrote to the most awesome Derek Benson who makes Lunchbag Art for his very, very lucky children. I had seen an article on Yahoo! about what he does and had a blast showing the pictures to J, especially when we saw Minion from “Megamind”, his all time favorite movie. I had nothing to lose in asking him to help us with our fundraising and I am very, very excited to share with everyone the image he came up with and our fundraising t-shirt campaign through Custom Ink!

The whole thought I had, scant though it may be, was to convey the bond between a boy/child and their dog. Here’s what he came up with: 

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Incredible, right?! The best picture of J I have plus a hint of who his companion down the road might be all in one image… I’m such a sap that I was tearful the first time I saw it. 

Thanks to Brendan at Custom Ink this beautiful image has been put on shirts. You can find them here:

https://campaign.customink.com/teamjacoblyfor4pawsforability

We are committed to selling 100 shirts before they go to press. It will raise just over $1,000 towards our $13,000 goal. If we fly through selling 100, we’ll just have to open up a second campaign won’t we!

Share this around if you can! I’ll add it to the main fundraising page. 

 

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