We are already on our way home! We were called back to the post-anesthesia room just before 1:00. Kiran came into the room, before we were called back, with his eyes already starting to open.

He was extubated in OR and had no oxygen needs once in recovery room. We were able to give him 2 Oz of pedialyte around 1:20 and 2 Oz of purée (both given thru tube) around 1:40. He kept both down like a champ.

So – home we go! If we don’t hear from Dr Drack by Monday with the results, I will call Tuesday morning.

So thankful Kiran is such a stud with sedation. Strong dude.

Now. More waiting.

First of all, our nurses rocked today! Easiest and best (FIRST TRY!) IV placement Kiran has ever had! It makes such a difference in the overall experience when it doesn’t start in a traumatic way.

The anesthesia team took Kiran back a few moments ago. I felt very comfortable and confident in all our team members. Their plan was to intubate Kiran once he is under. I hadn’t really considered this being a possibility, but he said with Kiran’s excess drooling/risk of aspiration, heart history, and developmental delays, it would be important to do so. Makes complete sense.

Kiran has never had any issues with anesthesia, nor has he had any issues with being extubated in the OR. So, we are not anticipating any surprises this morning.

The scan should take about 50 minutes, making this next hour a long one.

Nobody ever dreams about imperfection or difficulty. Nobody ever imagines a life full of challenges and grief.

I am not the only one living an unexpected life. We all are.

We all live inside the life we choose – but so much of life is also handed to us.

I am thankful for what life handed me. I would have never, in a million years, chosen Kiran. Hear me out: I would have never dreamed of a medically fragile child with special needs. I would have never imagined a child with a long list of diagnoses.

I’m a broken record sometimes. But this is not a life I would have chosen.

I am thankful this life was gifted to me. I am thankful Kiran is my son. I am thankful he is sitting next to me, in the backseat, hollering and clapping joyfully, all the way to Iowa City.

I have been keeping myself ridiculously busy today.  I have found several unimportant, non-time-sensitive tasks to keep every moment occupied.  It is because, today, I want an idle mind.  If my hands do not keep busy (and thus keep my mind occupied with the minutiae of everyday life), I will have too much time to think.

And, in case this hasn’t become apparent yet: When I think, I worry.

Wednesday is a day I have been waiting for, for months now.  It is finally time.  Now that it is here, I don’t want it to be.  I’m not ready, even though I have been ready for months.

That is always the way, isn’t it?

Kiran will be getting his brain MRI on Wednesday.  It is my understanding we will not receive any results right away (though a part of me is simultaneously hoping/not hoping this won’t be the case).  We *should* have results by the end of the week, via a phone call from Kiran’s genetic ophthalmologist.

I would appreciate prayers at 10 am on Wednesday.  He will be going under anesthesia for this.  It is always hard on me.

 

Today, I am thankful for slow mornings.  Mornings when we don’t have to hurry to be anywhere at any specific time.  We have already fallen into a rhythm I enjoy.

We wake up at our house at 6 am.  Kiran sometimes forgets, but he is content (enough) to vocalize in his bed until 6 am, when we wake up.  Brace comes off, diaper is changed, and we do joint compressions (an OT activity to promote body awareness) to “wake up his body”.  We come upstairs, and we practice standing at Papa’s chair with toys.  We practice hands and knees.  Standing, he got up to two minutes and forty-five seconds this morning.  Yesterday afternoon, when I wasn’t timing him, he stood for a solid 10-15 minutes.  Hands and knees, he did 46 seconds this morning.  It’s far more than he has ever consistently done.

He is getting SO strong!

We have breakfast.  I remember to do the tongue swiping (a feeding activity to promote tongue movement) before we start.  He eats.  I eat.  And then, we go for a wagon ride.  This is my favorite part, I think.  Except for yesterday, when the torrential downpour at that time of morning prevented us from doing so, we have gone out every morning this week.  He is still in his pajamas – as am I – and I carry my coffee cup with me.  We walk the neighborhood for maybe ten minutes.  We listen to the birds.  Enjoy the fresh air.  Isn’t it great that spring has finally sprung in Iowa?

He has some independent play time when we come back inside.  I handle dishes and breakfast cleanup, laundry, whatever I need to handle, while he works on his visual attention skills and toy play (OT and speech activities, really PT too – sitting skills).  We read books and play together.

I feel like we incorporate his therapy homework in a slightly structured but mostly really fluid way.  It makes me feel both accomplished and like Kiran gets to be a kid.

I like slow mornings.  I like not being rushed.  I like enjoying this time with my son.  It is not lost on me that our lives are about to change, yet again – the fall brings preschool and more structure to an already pretty structured life (with therapy appts and medical appts).  There will be busy days this summer.  Mondays and Thursdays are therapy days; we have some medical appts sprinkled throughout – one week from today, for instance, is his brain MRI.  But the days that are ours – the slow, non-rushed, sweet sweet days that are ours – those will be my favorite.  And I plan to make the most of each and every one.

We had a long afternoon yesterday at the Center for Disabilities and Development. Kiran participated in what is called the Neurodevelopmental Clinic. Basically, we saw, in a staggered fashion, a specialized pediatrician, a physical therapist, an occupational therapist, and a speech language pathologist. We had new sets of eyes take a look at where he is and express concerns, give recommendations and just give us a fresh perspective.

It was a long afternoon. Overall, I would say it was worth it. We have some good things to take back to our team at home who know Kiran best. Arif and I ultimately decided the experience was valuable enough to repeat annually (unless concerns arise or something stumps us/our regular team) but not something we want to do on their proposed schedule (every six months).

The biggest thing that came from this was the pediatrician recommended a cognitive evaluation for Kiran.

I don’t talk about this piece often, because this mama’s heart struggles with this possible reality more than any other. When Kiran was a day old, I remember looking at him and just – knowing – how do you say this about your child the right way? Just knowing that he wasn’t all there. I just sensed that, intellectually, something was going on.

Throughout the last couple of years, I have been able to push that thinking aside. For awhile, it was easy to explain away his global delays because of his heart. But then, though progress has always been forward-moving, it has been so slow. And as I have watched Kiran grow more and more and gotten to know him better and better, it has become more apparent to me that there has to be something else going on we don’t know about yet.

I am surprised it took someone new, meeting Kiran for the first time, to recommend this. I am surprised his regular team hasn’t suggested it. However, I did briefly look into cognitive evaluations for young children, and it looks like he is right at the age they are able to start testing this, so maybe the recommendation would have come. Perhaps the MRI results would have led us there. Perhaps I wasn’t ready to really face it all until now.

Kiran is Kiran. He is doing his own thing. He is on his own schedule. He is his own dude. And he is one of the coolest, sweetest human beings I know. As a friend of mine said – He just oozes personality.

So whatever these cognitive things show: the brain MRI in May and now the evaluation in August – they just help us understand better who Kiran is. They don’t change him. He already IS.

But boy, do they change me.

It is interesting how the same process taken to do something looks – feels – so different when the circumstances change.  Performing a routine g-tube placement and performing an “oh crap, I just accidentally yanked his tube out”  g-tube placement are incredibly different experiences.

For those who have followed our story all along (and seriously, if you haven’t started at the beginning and read all the way through, I think you ought to – our story is a good read), you know this is the second time the tube has been yanked out unexpectedly.  The first time it happened, it was literally the night after we had learned how to perform the placement that morning – so three months after it was surgically placed.  Annnnnd it happened with a sitter.  Needless to say, we ended up in the emergency room with the need to dilate – Worst. Thing. Ever.  It still ranks up there as one of the hardest experiences I’ve watched him go through.

Now, almost two years in, with several successful routine placements under my belt, I at least could approach the situation with far more confidence than I did the first time (when I basically stood back and let his dad attempt, called the home health nurse, went to ER).  So – here’s what happened, in a nutshell (And yes, it was 100% my fault).

Kiran was super sleepy in the car coming home from therapy this afternoon.  Since I gave him his water before we left Childserve, all I needed to do was his g-tube meal when we got home.  I opted to take it all outside on the deck (SUCH a great day!) and just feed him on my lap.  I forgot to take water outside with me, so when I finished with his snack, my intention was to go in and flush his extension and tube with water before putting him down for a nap.

However, once I got inside, my brain went into autopilot, and my focus shifted completely to putting him down for a nap.  I completely forgot his extension was in, completely forgot I hadn’t flushed it out yet, completely forgot that I have been a tubie mom for practically 2 1/2 years and I should not be a newbie at any of this….

So I went to put him in his crib with the extension still attached (This is exactly how it happened the first time, too, only the sitter knew the extension was still in; I wasn’t even being careful because my brain forgot).  Sure enough, the extension caught between me and the crib, and as I laid him down, I heard that dreaded POP!

I knew immediately.  I looked down and one of the things I have feared the most (silly, but true) was reality: There was the extension, his tubie pad, and the Mickey button with the balloon still full of water.  Ouch.

Kiran didn’t even fuss.  He kinda made a noise and rolled to his side when it happened.  Then, as I ran upstairs to grab my emergency tube kit (it lives in the diaper bag so it’s always with us), he started “talking” to me about it, but not in an upset way.  I took the water out of the balloon, lubed the tube up, and made my attempt.  It didn’t go in.

Fun fact I learned today: When the button pops out with the water still in the balloon (It takes some good force; it’s quite a bit bigger than the hole it comes out of), the stoma (the hole) immediately starts swelling.  I’m still kinda amazed Kiran didn’t fuss, because it hurts me thinking about it popping out like it did.  So.  It takes more force to push it back in (It is also why you have to get it done quickly or you end up dilating in the ER).

I learned something about how far I’ve come today.  I stopped, I took a deep breath, I gave myself a quick pep talk, and I tried again, applying more pressure even though I was completely panicked about the whole thing.

And it went back in.  And it didn’t hurt him – at least he gave no indication that it did.  And then I just hugged him.  Put him down for a nap without any additional drama.  And shook for the next hour.

That may be an exaggeration, but it is definitely not a fun experience.  I do feel it is one that will be repeated, only with Kiran as the culprit – He has been pulling and yanking at his tube so much lately, I’m surprised it was my fault the first (second – I don’t always count the first since it was with the sitter and I missed out on the oh crap moment) time this happened!

Still, another experience under my belt.  Now I fear it far less.

 

Iowa City day today. Kiran met with a dietician, gastroenterologist, speech-language pathologist, and psychologist to get some fresh sets of eyes on where he’s at with his feeding.

We basically left with affirmation that we are doing all of the right things, and there isn’t anything different – or more intensive – we should be doing right now. His oral-motor skills need to strengthen and progress before we could really move forward with anything behaviorally. Also, weaning calories off the tube at this point wouldn’t do any good because he isn’t taking enough volume orally to start making a connection between hunger and oral satiation of that hunger. The kid just needs more practice with eating effectively.

The psychologist gave us some good instruction that we can start shaping behavior – with facial expressions and our voice – with things like his piranha biting on the spoon or wanting to do everything himself. Though I do this type of shaping in other areas (or try – hair pulling continues to be a huge issue), I hadn’t thought to extend it to mealtime behaviors. I think my focus had always been on making mealtime fun and directed by him – but she’s absolutely right – he’s 2 1/2 in 2 days, and it’s time to start shaping behavior in all areas.

Of course, they want to now become a part of his care, so we will meet with the feeding team again in six months to see how he’s doing and potentially re-evaluate.

In other news – just received an email almost 2 1/2 years in the making – Kiran has been approved for respite care! We have been allotted 50 hours a month, and his longtime babysitter and friend, already a respite care provider, will be providing the care. So excited they will get to have regular time together again, as their relationship is truly special.

Tomorrow will be Kiran’s last day in the cage for his intensive physical therapy program.  Testing was done today to make sure we would have enough time to get it done, and he did great!

Last time we started the session, he started at 87 assist points and by the end of the 10-week session, he was down to 70 assist points (It’s like golf – lower score is better).  He retained a lot of his progress over the course of the four months in between sessions and started out this session at 76 assist points.  This was an 8-week session, and he tested today at 60 assist points!  This is amazing progress, as his PT stated a good cage session is usually an average gain of 14 points, and he has had two sessions with even better results!!!

From watching the testing and hearing his therapist’s feedback, I would say his greatest gains were in quadruped (hands and knees) and sit-to-stand.  She was even able to test marching this time – it wasn’t even possible for her to attempt with max support last session.  He has really grown a lot stronger, and it was so cool today to see just how much progress he has made over the last two months!