*Official* Sleep Study 3.0 Results

This afternoon we got *official* sleep study results. We were shocked we got them back so quickly, and when the pulmonology phone number showed up, there was a moment of panic. If we have learned anything on this journey, it's that you don't want results back sooner than expected. That usually means things went awry, and the doctors need to get you in quickly for an intervention. 

The doctor started off the conversation asking me how I thought it went. Seriously? Just tell me the results. I thought it was fine. The RT (Respiratory Therapist) winked at me. He didn't have any episodes. There was no hospital trip. I thought it was fine.  But nobody pays me to interpret sleep studies, so tell me the real answer, lady. 

The short answer? 

No trach for this guy! He did well, he remained within his allowable settings, and had no episodes. The doctor did share his oxygen saturations looked good! This is excellent news. His CO2 levels were a little high, but it could be explained by the monitoring (it is not done as a veinous blood gas, which is the most reliable measure, but not feasible during the study). The doctor did point out that he's still on a very high level that does come with risks, like a pneumothorax, which is a collapsed lung, but the results of the study are very reassuring that the interventions we have in place are doing what they should be doing. For that we are grateful. 

We will follow up in clinic in two weeks to discuss next steps, which likely will include asking ENT to scope him to see if there are any structural or anatomical reasons for the obstruction when he sleeps. From there we will know if there will be any additional interventions. 

For now, though, we will take a deep breath and celebrate this news. This kid, he never ceases to amaze us. 

Beach Baby

Wyatt and his mama are spending some time in the Outer Banks of North Carolina! We are crashing with my friend Meghan's family. It was a sort of last minute decision and we packed the car and drove down here. Wyatt did well for most of the drive, minus an unfortunate diaper incident. Yuck. 

All loaded up and ready to hit the road! 

We hit the beach yesterday and realized pretty quickly that Wyatt is a beach baby. He loved the breeze and the sand between his toes. He even took a pretty great nap on the beach. 

We even went to the pool!

What a great day in the Outer Banks! 

Sleep Update... Sort of

This guy? He nailed that sleep study. We do NOT have *official* results, but my impression was he killed it. He didn't have any episodes (desaturations, high CO2, or blue spells) and they only had to increase his setting by 1. He was allowed to increase up to 24 and we started at 22, so he was in the allowable range. If he had to go higher than 24, the doctor would have been called and I suspect we would've been sent to the ER. 

BUT! That didn't happen. 

The sleep techs can't give you any information, which is suuuuuuuper frustrating, but the Respiratory Therapist did say he slept well and gave me a wink. I think she's definitely on Team Wyatt. 

This was after we got home. Check out that wild hair from the electrodes. Although, who am I kidding? His hair is always wild. This was just wild with gunk in it. 

Thank you so much for your kind words, prayers, and ALWAYS being on Team Wyatt. As soon as we get the official report, I'll be sure and let you all know. 

Big Week

Due to some scheduling changes, Wyatt's sleep study has been moved to this week. Wednesday. As in, right around the corner. 

Because this is our last study before a decision about a trach is made, we are a little (nope, a lot) anxious. While we know a trach isn't the end of the world, and we will do everything we can if it means his quality of life is improved, it's still a really really big change for him. 

(Yes, still teething. Now it's the upper teeth. Sigh.)

We would appreciate any thoughts and prayers you can toss our way this week! 

New Look!

You guys! Wyatt's blog got a little facelift. We changed the name to match his Facebook page, Love Wyatt, and gave it a cleaner look that can grow with him.

Note: The title of the blog and his Facebook page does not have a comma for a reason. It is not a typo. Promise. 

Wyatt's home nurse came today and I'm pretty sure it's the first time we didn't have any real concerns. He gained 2.5 ounces in the last week, which makes me one happy mama. Since birth, we had to work hard for every single ounce. Every time a scale came out, I had mini panic attacks because he had a heck of a time gaining weight, and I just knew a tube was on the horizon. That spidey sense is strong for this mama. I just had the timeline a little off, oh well. Anyway, the weight checks were rough. 

Once he got the feeding tube, he gained weight a little too fast. We had to be mindful of his feeds, make some adjustments, and get him to slow down his weight gain. As the ENT reminded us, chubby babies who have extra rolls on their chins are cute, but they can't breathe so well. So we slowed him way down and watched what happened. Then we increased calories a bit and he's very slowly gained weight. Like .5 ounce a week. If any. You can imagine I was a little anxious about that, since every weigh in is a little bit like PTSD for me. 

This was back in the chunky phase... look at those chins. 

But he's gaining or maintaining, so we keep on keepin' on, folks. 

Updates for appointments this week: we continue with private physical therapy (PT) 2-3 times a week this week, OT at the house, and audiology appointment on Friday afternoon. I'll be very curious to see what she has to say about his hearing. Cross your fingers and toes for good news! 

The Growth Hormone Debate

If you saw my post on Love Wyatt this afternoon, you know we had an endocrine appointment today. I posted about crossing fingers and toes for good growth or we would have to explore growth hormone. I also promised to explain more, so here I am. 

(But first... cute WyGuy photo!)

Part of Optic Nerve Hypoplasia is issues with hormones like thyroid, cortisol, and pituitary dysfunction. This is because the optic nerves are right around the pituitary which is your master gland. I can only assume they develop around the same time in utero. Because your pituitary gland does an awful lot for your body, if it doesn't function right, it can make things go poorly. Wyatt has been fortunate that his pituitary gland is fully developed, and so far appears to be doing its job. Many kids with ONH have difficulties with growth. Wyatt is one of them. Lengthwise, he hasn't grown a whole lot (and he started out short to begin with) and there is some cause for concern. Growth hormone isn't just for growing tall, it's also important for development. 

Wyatt has had a lot of blood work to see what's going on with his levels and his thyroid levels have consistently been borderline, which is a little tricky to understand because most of the values are based on adults, not kids, so it's difficult to determine what is "normal" for a young child, but we do know his values are borderline. As a result, our endocrinologist wanted to try intervening with thyroid meds to see if that might kick start his thyroid, which could also contribute to slow growth. So we started with synthroid (synthetic thyroid hormone) in January to see if it has an impact. 

Unfortunately, he didn't grow much since our last visit. The other unfortunate part is the lab never sent the April labs to the endocrinologist, so we didn't even really know if his thyroid levels are stable or if they are still low, which could mean we need to increase to see an impact with growth. It also could mean he's not really hypothyroid, so the synthroid isn't doing anything. 

All that to say, we don't really have any answers. I'd love to say I'm shocked, but our guy is truly a medical mystery, so it's pretty much on trend for him. 

We are going to get the lab results, then make adjustments to synthroid if need be. We will retest him in 2 months, readjust if need, test again, then return in 6 months. At that point we will complete a growth stimulation test which involves lots of blood draws, some injections, and lots of interpretation. 

If he is truly growth hormone deficient, that test will tell us. His last growth test was not remarkable, so the other thought could be he's just a short guy. Which could make sense, as Brian's side of the family isn't tall. The drawback to growth hormone is that it's injections. Daily. For years. So you can imagine that we are cautious about jumping into an intervention without first exploring all other options. 

So... another appointment with zero answers, but we have next steps so I can accept the no answers as long as we have a plan. 

What? This isn't how you eat avocado? Weird. 

Seeing it Through His Eyes...

Since receiving Wyatt's diagnosis, I have often wondered exactly what he can and cannot see. I hate that every doctor we speak with tells us that we won't know what his vision is until he can tell us. I've longed to know just what he sees. How he sees it. I've wished I could see through his eyes. 

Last night I did. Last night was magical. 

It's blurry. But it's perfect. It captures the movement and joy he experienced last night watching the fireworks. This is his response after he saw (and heard!) his first firework. 

I'll let that sink in...

He saw. He watched. The kid with a visual impairment SAW the fireworks. 

He heard. He listened. The kid with a hearing impairment HEARD the fireworks. 

He cheered when it was all finished. 

Last night was magical for a variety of reasons, but mainly because I was able to see the fireworks through his eyes. His perspective. They were magical to him. The sound startled him at first, he jumped, but then he saw the sky light up and he smiled. He laughed. He clapped. And when the finished, he laughed the whole walk home. It was truly magical for him and for me. 

Seeing the 4th of July fireworks through his eyes, his joy, his excitement, was pretty amazing. 

*Special thanks to Meghan, who swears I'm only friends with her because she lives in Baltimore (hello close to Hopkins! Hello good food! Hello fireworks we can walk to!), for letting us crash at her place last night AND for capturing these special moments. 

Also, just so there isn't any confusion-- Wyatt has some vision and some hearing. He isn't completely blind and he isn't profoundly deaf, but both his hearing and vision are impaired, which still makes yesterday amazing. 

A Little Gas... a Lot of Trouble

Because Wyatt is tube fed, it means he receives all of his nutrition through his feeding tube. In addition to his feeding tube, he had a Nissen Fundoplication (often referred to as a fundo) completed as well. A fundo is an intensive intervention to treat gastroesophageal reflux disease (GERD). The procedure involves the upper part of the stomach being wrapped around the lower end of the esophagus, reinforcing the lower esophageal sphincter. In non/medical terms, it means part of his stomach is wrapped around his esophagus. It prevents the reflux from going into his esophagus and causing additional pain. It also means he can't burp or vomit. Although there have been many people who have blown through their fundo because their reflux is that bad. Wyatt's surgeon told us to be sure he doesn't party too hard on his 21st bday or he will end up getting his stomach pumped. I may or may not have cheered inside hearing that because that means I can give him a medical reason to never drink in excess. Mom win. 

This kid is gassy, though. Since he can't burp on his own, we have to assist him with it. That's called venting his g. It involves putting a large syringe in his g port and opening the port. The air bubbles will come through and essentially we've burped him. The funny thing is, it sounds like a burp and I have a really crude sense of humor and giggle every single time. Wyatt does too, but I can't tell if it's because he is getting relief or if he thinks burps are funny too. 

The other hard part with Wyatt's feeding is that he's actually not fed into his stomach, he's fed into his jejunum which is in the small intestines. So if the problem is that far "down the line" we can't burp him, he has to release it from the bowel. Again. This kid is gassy. So sometimes we can't give him relief and he's sort of miserable until he can get it out in his own. He also giggles at this. I do too. 

Here's a picture collage of before venting and after. 

He's miserable. We vent. He "burps". We laugh. He does too. Life is good again. 

Sometimes this process happens in the middle of the night and venting gets a little messy because stomach contents are flying and you're practically sleep venting, and well, it ends with the bed, kid, and sometimes adult covered in vented goodness. 

But he's relieved and so are we. 

I tell you this to share the medical side of Wyatt, too. His feeding tube literally saved his life and has played a huge part in the progress he's made, but it's not without consequences. He's attached to a feeding pump 20 hours a day, we have to time baths, swimming time, medicines, travel, etc around his feeds. But, he's growing and thriving. And happy as can be. 

As parents, we can't ask for much more. 

Say WHAT?!

We are at 68 days since our last hospital stay or ER visit. This is huge. That's the same number of days that we were in the hospital between November and May. 

To celebrate, Wyatt is currently having a party in his crib. I can't decide if I'm angry or not. The party is because he learned a new trick. He learned how to push up when he's on his stomach (like tummy clears the ground!) and then proceeds to fall a second later, which is suuuuuuuper fun in the crib since he sort of bounces. We hear squeals of delight every now and then because it's just so much fun to do this new trick. Way better than sleeping, in his mind (clearly he can't be my child... I'd choose sleep over fun any day) and so he does it repeatedly. It's quite a feat considering he has a face full of BiPAP mask, air blowing in his face, and tubing to work around. 

See that blur to the left of the tubing? Yup. That's Wyatt. In motion. Mid-roll, laughing at his poor mother who just wants to sleep. 

This afternoon he had some avocado. He ate it in a very unconventional way. I mean, I love me some avocado, but not nearly as much as he does. Kid was bouncing and doing yoga, while eating. But he loved every second of it. 

Side note: You'll notice he's in his bouncer, instead of his high chair. He had spent a fair amount of time sitting up and working his core prior to that, so we went back to the idea that food is fun and we are working on oral motor, so we removed the core workout, which is required of him when he's sitting up. These are all things we have to consider when we are working (and playing!) with him. We have to strike a balance between work and fun, but also focus on the major goal of the activity. Sometimes it's exhausting analyzing (over analyzing?) the activities we do each day, since Wyatt requires some modifications to his daily living. 

Therapy CAN be Fun...

Our favorite blonde boy started physical therapy this week with a local therapy center. He has been receiving twice monthly physical therapy through Infants & Toddlers, but we know that as he's growing he has some additional needs, including potentially requiring adaptive equipment. Because of this, we chose to get private PT in addition to Infants & Toddlers. 

He had his first session on Monday. He did okay, but homeboy gets a little frustrated when his PT wants him to work a little harder than he wants to work. I was an anxious (helicopter?) parent and it took all of my energy to not put my foot down and say, "Stop making my baby cry!" It is a bit torturous to sit back and watch someone push your kid to tears. But since I'm learning to sit back (ha!) and relax, I persevered. So did he. And everyone was fine. 

Today we got a call that there was an opening for the aquatic therapy, which was awesome since we were told it's a 1 year waiting list. I can't decide if it's because he is in desperate need of therapy, or if we just got lucky and the stars aligned. Regardless, he had his first aquatic therapy session and he did well. 

 

Kicking his feet with Ms. Sarah. 

 

"Okay lady, I'm tolerating this pool but what I really want is your fingers. Or your watch."

 

"Mom! Stop! You're embarrassing me!"

It's been a big week around here in addition to therapy. Wyatt had his first overnight slumber party at Ms. Roxanne's house. He got to party with Bray and Addie, and of course loved every minute of it. In fact, he had so much fun he woke up at 1 am to continue the party! Mommy was a little anxious since it was her first time staying away from him overnight, other than a hospital stay, but our guy rocked it. Ms. Roxanne said he passed the test and can come back again sometime. 

And just a few fun photos of bath time tonight...

 

  

Growing as Parents

Last night when I couldn't sleep (it's a common theme in our house...), I began scrolling through older photos of Wyatt in his first days and weeks of life. Photos that made me feel a variety of feelings, because in those first days and weeks of life, it was a rollercoaster of emotions. There was pure joy seeing this face... 

I mean, if that photo doesn't make you giggle, I'm afraid you don't have a heart. Or a sense of humor. 

 

Then there's this photo. What you can't see in this photo is the reason he's not in his clothes. The reasons his leg looks so bad. And those feelings are scary. You see, he isn't in his clothes because things got a little dicey for a bit and the team felt like they needed to be sure they could access him quickly if something happened. He's on oxygen and we were debating about CPAP. The blood on his leg is because the team had a really hard time placing his central line (if only we knew this was a sign-- kid is a HARD stick!). 

 

This photo is the one that really got me thinking. This is not long after he had his tongue tie revision completed. It was a laser snip, completed by an ENT. I had to leave the room because I was so scared. I couldn't watch my baby be in pain and not do anything to help. And while I knew it was required for him to eat successfully, my brain couldn't trump my heart. I had to leave. 

 

This photo was after his gtube surgery. He's intubated (machine is breathing for him) and I couldn't leave his side. Later this hospital stay, we learned that he continued to be a hard stick for an IV, so the scalp IV is the easiest one to place for him because the skin is so thin and his veins are easy to see. It's also less likely to get pulled by a curious little one or burst because of so much movement. Now? We immediately tell nurses to go straight for his scalp because it's not worth digging around for a while in his arms. We also burrito wrap him, hold him down, and hand nurses supplies. 

I've replaced a gtube after multiple nurses couldn't replace it. 

But, I couldn't stay in the room for a 30 second (maybe even less!) procedure when he was 12 days old. 

Now I refuse to leave his side, unless they make me. We need to be there for our son. We need to be brave for him. We also have to advocate for things, even if they are difficult to see. 

This guy isn't the only one who had grown. We have grown as parents. In ways we never would have imagined. And while I know every parent grows as parents as their children age, or experience new things, I can't help but think that we have done a lot of growing in a little bit of time. He's gone through multiple surgeries, hospital stays, some scary times... 

And he's still fighting. We are brave because he's a warrior. 

(For the record, scalp IV placement is still really freaky, but it's less so now) 

....Just Because....

Photo dump, just because he's so cute. Not that I am biased. He's pretty much the cutest kid you'll ever meet. 

 

I wish I was this happy when I woke up! 

 

You'll notice he is awfully comfortable. I still can't figure out how that afghan found its way in the crib. It was hanging at the end of the bed... 

Sometimes he just likes to chill with his feet up, relaxed, chewing on a bell. 

 

"You're feeding me what?"  

As far as updates, I'm happy to report that things are relatively calm around here! (Knock on wood!) 

We have a bunch of follow up appointments in the next couple of weeks, including a follow up with Audiology, endocrine, GI, and pulmonology. We also need to sneak in a visit with ENT, but we need some additional guidance from the other specialty groups so we are holding off on scheduling until we get some clarification. We also have the dreaded sleep study in August. I'll provide more information about this in an upcoming post about sleep apnea. 

Other big news around here: Wyatt starts private PT next week. We are hopeful that PT combined with some adaptive equipment, combined with our Infants and Toddlers services (through the school system), will help our guy make even more continued progress. 

Thank you for continuing to follow us on our journey with Wyatt! 

....Just Because....

Photo dump, just because he's so cute. Not that I am biased. He's pretty much the cutest kid you'll ever meet. 

 

I wish I was this happy when I woke up! 

 

You'll notice he is awfully comfortable. I still can't figure out how that afghan found its way in the crib. It was hanging at the end of the bed... 

Sometimes he just likes to chill with his feet up, relaxed, chewing on a bell. 

 

"You're feeding me what?"  

As far as updates, I'm happy to report that things are relatively calm around here! (Knock on wood!) 

We have a bunch of follow up appointments in the next couple of weeks, including a follow up with Audiology, endocrine, GI, and pulmonology. We also need to sneak in a visit with ENT, but we need some additional guidance from the other specialty groups so we are holding off on scheduling until we get some clarification. We also have the dreaded sleep study in August. I'll provide more information about this in an upcoming post about sleep apnea. 

Other big news around here: Wyatt starts private PT next week. We are hopeful that PT combined with some adaptive equipment, combined with our Infants and Toddlers services (through the school system), will help our guy make even more continued progress. 

Thank you for continuing to follow us on our journey with Wyatt!