10 Feb

Upper GI Studied

Posted by jaysaint in Alden.

The big event of the day was an upper GI study, which differs in value from the endoscopy Alden’s already had because they can watch him swallow something other than a camera.

As far as hospital tests go, we rate this one a “must try.”

Alden, the child who acts like I’m poisoning him with my disgusting bananas and peanut butter and cheese sticks, protested when the nurse pried the nearly empty cup of barium contrast fluid out of his paws.

Lead Gonad Shield

Today was all toys and lights and cool pictures of innards. Which are all normal.

Monday at oh-my-god in the morning we report for the MRI of his brain. The nurse asked me if he could lay perfectly still for 45 minutes. I told her that he cannot lay perfectly still for four to five minutes. General anesthesia it is. If anyone has a four-year-old who can hold any position for nearly an hour, please tell me so I can block you and your perfecty perfect kid.

In the spirit of “Eat, Drink and Be Merry; for Monday We Get the Needle” we’re going to spend a long stretch at the Children’s Museum this weekend.

9 Feb

Doctor Eve

Posted by jaysaint in Alden.

Late last night Alden whispered in my ear, “Please don’t take me to the doctor.” I did what I’d been promising myself I would not, which was to make him a guarantee. I told him that they would not put another tube down his nose. I didn’t make any promises about needles or hospitals or anything else, but if one thing has come to represent the most miserable parts of his passage through the Knoxville medical system it was that NG tube. The inserting it. The having it. All of it. I can’t see why we would need to do that again, and if I’m wrong they may need to tranquilize us both.

He’s symptom-free right now, although we have decided not to give him the Zofran tonight so that may change. We’re not trying to instigate anything, but it seems wise to make sure there are no medicines onboard when they see him for the first time.

I don’t know what to expect. Will they give him an exam and then shrug and tell us to come back if he starts vomiting again? Will they admit him to the hospital and wait to see what happens? Will they schedule a series of tests that will keep us in Cincinnati for next week or even longer? I’ve lived with the uncertainty for two weeks, so I’m trying to parcel this off in my brain and wait patiently for 16 more hours or so. I’ve packed up my computer and work notebook, counting my lucky blessings I have the kind of work and the kind of boss that makes it possible for me to set up a remote office.

The 2am Zofran works. I’d really like to wave a “Nothing to see here” hand over Alden and just commit to doing this forever. Except for how that’s crazy.

The doctor we’re seeing tomorrow got his MD and his PhD in the same year (I Googled him, naturally). Surely he can figure this out.

Alden has no intention of eating hospital food. The empty spot on his plate was the toast.

8 Feb

The Graduate

Posted by jaysaint in Elliot, speech.

Elliot got the boot. Was told to hit the road. Don’t let the door hit you on the heinie, little guy.

He’s officially an early intervention graduate today.

Eight months ago my nearly-speechless baby would head butt me for attention. He still head butts me, but at the same time he will yell, “I bonk you, Mommy!” So, progress.

He also says things like, “Alden take my rocket ship!” and “I shoo the kitties. Shoo shoo kitties!!” and “I bite you nose? I bite you nose!!!”

Now that he can talk, he likes to narrate.

— I look at that race car, Mommy?

— I take it?

— I vroom it?

— I frow it?

He’s going to do those things no matter what I say, but he enjoys the Q&A.

We get so much joy hearing all the crazy things that have been swimming around in his brain. Now that the impediment has cracked open, it spills out all day every day. He called me at work the other day to tell me there are “zhombies in the dollhouse.”

His sensory issues faded to almost nothing over the time we were focusing on his speech. Sandy feet was a reason for a meltdown a year ago. Now, total non-event.

He still has some oddities that I expect to unfold and change, maybe coming on stronger and maybe fading away. Some of them, like military-precision toy aligning, feel comfortable to me because I know I did the same thing when I was a kid. His speech therapist offered to re-evaluate him in a few months to make sure he isn’t stalling or slipping. I’m going to take her up on that. The University of Tennessee speech therapy lab has been a wonderful resource for us.

Speaking of, Tennessee Early Intervention Services was the source of all this important assistance for our family. It’s free and all Tennessee families are eligible regardless of insurance or income. I had a heck of a time finding them, though, so let’s let Google help them help people.

For speech delay evaluation, speech therapy, developmental delays, motor skill delays, early intervention, cognitive delays, communication delays and adaptive delays, you can contact Tennessee Early Intervention Services (TEIS) at 1-800-852-7157

More information on eligibility can be found here.

 

 

27 Jan

Faring… Stable

Posted by jaysaint in Uncategorized.

What a miracle is ondansetron, also know as Zofran. We still don’t know what’s wrong with Alden, but a well-timed dissolving pill keeps him vomit free. It’s been six days, which is the longest we’ve gone since this all began. There is some terrible cycle that needs to be broken, and what works is to slip that pill in his mouth around 2am. Some people shudder when I tell them I have a standing alarm set for that hour. It’s so much better than the alternative, though, I hardly feel it. If I have to give him a pill every day at 2am every damn day, I won’t consider that too terrible a sacrifice.

Treating a symptom is not the same as finding a cause or a cure. I’m determined to find the first and hopeful to find the second. I’ve heard lots of suggestions, the most likely sounding one so far being a nightmarish condition called “cyclical vomiting syndrome.” I suspect we’ll need a neurologist along with our gastroenterologist. The various doctors we’ve seen have also mentioned rheumatology and allergists. It’s a lot, and it’s confusing.

In hopes of cutting down on the dithering we’re working to get him into the University of Cincinnati Children’s Medical Center. That’s a high-wattage alternative, a research hospital with the #1 ranking in pediatric gastroenterology. I am trying not to indulge in the idea that they will save us, that they will fix us. We just need them to help us.

Alden’s pediatrician asked me last night if we’d tried a night without the Zofran. I told him we haven’t had the nerve. I know we’ll have to do that eventually, but until we get into UC we’re just going to keep doing what’s working.

Alden shows his IV rig to appreciative office workers across the way.

17 Jan

Faring Poorly

Posted by jaysaint in Alden.

We’ve all had that rush of adrenaline when a car on the highway get misaligned and a collision looks inevitable, at least for a moment. It doesn’t happen, though, and we drive away shaken with the knowledge of what could have so easily been. No reason it shouldn’t be me this time.

Last night a doctor said that Alden was showing red flags for some very serious diseases. The word “leukemia” came out. That’s where I’ve been for the last three weeks. A busy, pleasant Christmas led right into a gastrointestinal storm that has had our 33-pound Alden laid low for weeks. He gets better; he gets worse. We spent the night in the hospital. He improved with a solid 24 hours of IV fluids. We went home and about our lives, until a few days later when he was as sick as he’s yet been. I’m writing this from the little sleeper couch in his hospital room.

I feel like I’m behind the wheel of that car. Multiple invasive tests today allayed the doctor’s concerns around cancer, around Crohn’s Disease and other chronic intestinal horrors. But between this night and last night all we had was an endless stretch of that oncoming car. I rattled back and forth between a disassociative blankness where I stared at the murmuring television on the wall and breathless panic where I crouched over Alden and imagined his silky hair falling out, imagined losing him. I wondered grotesque things like whether we would let Elliot wear Alden’s clothes. I ground my teeth in frustration with myself for going to such horrible places in my head. Sufficient unto the day was the evil thereof.

We’re still dizzy with the adrenaline release of hearing that the MRI, endoscopy and colonoscopy all showed a healthy digestive system. The doctor is betting on a crazybad infection that he hasn’t been able to clear. Some things still fail to add up.

His white blood cell count was 30,000 (very high) when we brought him to the ER on Monday morning. No fever. 24 hours in IV cipro and flagyl knocked it all the way down to 11,000 (almost normal). Apparently this count and absence of fever is a possible leukemia indicator. Our nurse tonight expressed her skepticism that the antibiotics could have such a dramatic effect so fast, but had no other theories to offer.

Whether viral or bacterial, he’s been extravagently sick for almost three weeks. No one else in the house has been affected despite lots of exposure.

All the cultures, and there have been many, have come back negative.

Paging Dr. House, please. Except, you know, for how all his patients’ skin falls off or their eyes fall out or they spontaneously combust. Please let us always be too boring for a genius diagnostician.

Alden has been so, so brave. He has tried to cooperate even though he does not remotely understand what’s happening. He went without food or water for 36 hours as part of his testing prep. He cried and begged everyone he saw to please get him something to eat. He screamed for me to protect him and make them stop when they put the nasogastric tube in. This morning he was so defeated he went mute, refusing to respond to anyone for hours, tears standing in his eyes.

Alden will spring back, I know. Now that the hardest parts of this visit are behind us his personality is peeking out again already. I’m expecting them to send us home tomorrow and he’s going to perk right on up once we’re out of here. We’re going to put this right on behind us, as we should, but this is me making a mark in this time that Alden truly suffered and we were so frightened of what can so easily be taken away. A quick walk down these hallways reminds me that there’s no reason it couldn’t be us.

 

 

 

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