Update 4/28/17

Wyatt had two appointments yesterday- GI and pulmonology. We pretty much knew what GI was going to say, our guy is getting huge! He is. We need to slow down his weight gain, as he's gaining just a little too quickly. Because he has to work extra hard for his milestones, we don't want to add in another contributing factor. Too much weight gain too quickly can impact motor development in low tone babies. So we scaled back his calories and will be changing his formula to see if that helps his output, which in turn will hopefully help his diaper rash. 

 

Our second appointment was at a different location that, depending on traffic, can take anywhere from 10 mins to 30 mins to get to on any given day. So I planned for extra time just in case. Wouldn't you know, we didn't need it today. Oh well. There's a park down the road from our second appointment and we took full advantage of the beautiful weather! Wyatt enjoyed the wind in his hair and rolling around on the blanket. 

 

The pulmonology appointment didn't go so well. They are super concerned, as are we, about his oxygen saturations and his blue episodes. We talked at length about what could be causing these, as well as interventions. We are going to do some tests to see if it's autoimmune related, or something else. We will also add another medicine to his daily routine to see if that will help combat some or the issues. He has his sleep study on May 11th, which will ultimately be the big test. During that appointment, they will titrate his settings on BiPAP. If he doesn't improve on the highest settings, we will be looking at very invasive measures to support his breathing. There is a potential for a trach. We will do whatever he needs, but I would be lying if I said I wasn't hoping for a miracle. We are crossing our fingers and toes that Wyatt tells us what he needs during the sleep study. 

 

For now, we will continue to smother him with kisses! 

Change in plans

Wyatt had a different idea for the plan yesterday. 

 

Instead of seeing our endocrinologist, we saw the pulmonologist in the ER. Rats. He started off his day like any other day, but once at daycare he had another blue episode. Our daycare is fantastic and let me know right away. I made some calls for work coverage, while heading back to daycare and made my way up to Hopkins. Ugh. And we were at the 13 day mark! We haven't been past 13 days between ER or hospital stays since November. 

They did a chest X-ray, it looked great. They did a blood gas, looked great. We have no idea why he turns blue sometimes. I'm not confident in the answer we received which was it's viral. I think there's more going on and we need more information. Thankfully the fellow/attending team on call this week is a team we already know, so I was able to let them know my concerns. We already had an appointment scheduled for Thursday with our pulmonologist, so the on call team is going to share my concerns with his doctor and will actually join her for a consult today. 

Cross your fingers that today is a better day for our favorite blonde boy. 

Just because I know one picture isn't sufficient... this is after bath. Photo on the left was an attempt to tame his hair. On the right? Approximately 3 minutes after said taming. 

 

He looks so different with calm hair! 

Meds...

My guy? Well, it takes a lot to keep him going. He requires a host of different medications to keep things going smoothly. When he's sick, we have to add on more. Here's a glimpse of daily meds for this guy. 

 

He requires two inhalers, some steroids, Prevacid, erythromycin, Bactrim, synthroid, and a good ol' water flush. Some of these meds are 1x a day, some are 2x, and others are 3x. The water flush is every 4 hours to keep his j-tube clean. If that were to become clogged, we would have to get him to the hospital and it would have to be replaced. Replacing it consists of going under anesthesia, so we work hard to ensure it doesn't get clogged. 

In addition to these meds, he has a pretty strict diaper routine that involves LOTS of aquaphor (you should probably invest in it now... you can thank me later), an antibiotic (when it's really bad) or an antacid. If it's terrible, we also use a no sting barrier film to help protect the skin. It's rough for him. No wonder he wakes up in the middle of the night screaming for a diaper change. 

He also has a few machines that help keep us aware of what's going on with him. He uses a BiPAP machine to give bursts of pressurized air to help with his obstructive sleep apnea. He also wears a pulse ox sensor at night to keep us aware of his oxygen saturation levels. Both of these machines have VERY LOUD alarms if something goes awry. While we appreciate these alarms if something goes wrong, sometimes the machine is just sensitive and alarms because it likes to see how quickly we can run. Or, because it's a machine and sometimes machines are wrong, usually due to a sensor that got pulled off by a curious 16 month old who loves his toes, or a bad deal from the mask because the same curious 16 month old would prefer to sleep on his stomach and the mask then gets pushed to the side. Either way, it's loud. We run. Wyatt is fine. We go back to sleep. 

I mean, we joked that this kid was a $100,000 kid after his little NICU stay. He's more like a million dollar kid now. 

This week we have quite a few appointments. We could use some prayers for guidance about knowing what to push with the doctors. We have endocrine, GI, nutrition, pulmonology, and PT. We got the results of the blood work from last week and it was pretty much the opposite of what I was expecting. I'm hopeful endocrine can come up with a plan. We are hoping to avoid the growth hormone injections as long as possible and the blood work seems to be discouraging in that respect. Either way, we will do what's best for Wyatt. We just hope it's clear to the doctors and us. 

The Little Things... They're HUGE

You guys. This just happened. 

 

It's blurry. My house is a mess. He fell over (and laughed hysterically). I'm crying. This is beautiful. This is the face of a boy who has worked hard for this skill. 

You see, we have been working on this for months. About 8 of them, to be exact. And he finally did it. It wasn't perfect, he was unsteady, but he did it. 

We don't take the little things for granted around here because the little things, they're huge. 

(That's why I had ice cream AND a cookie for dessert...)

Zoo trip

On Easter Sunday, we had a little adventure to the Maryland Zoo in Baltimore. We had a blast and made some memories while there. 

 

Hanging out by the giraffes. 

 

You know, just hanging with some penguins. We were fortunate enough to do the Penguin Encounter, a special behind the scenes tour of the Penguin Exhibit. We got to see the kitchen and see the habitat for the penguins who are animal ambassadors. We also got to get up close and personal and pet some penguins. It was a blast!

What an awesome adventure. I can't wait to share this story with Wyatt when he is older. The penguins loved his little toes and his feeding tube cord! I'm sure they looked like toys to them. 

I hope you had a wonderful weekend making memories with those you love. 

Medically Complex

Medically complex. It's a phrase we are used to hearing fairly regularly. We hear it at the ER, st the pediatrician, when we are inpatient, at rounds, during conversations with nurses, and even during conversations with non-medical professionals. What does it mean?

For Wyatt (and I assume any other child who is identified as medically complex), it means that nothing is every easy. He has a series of diagnoses that are somewhat interrelated but not correlated. Meaning: they impact one another but they aren't correlated or connected to one another. Or a specific diagnosis. As such, we find ourselves under the care of many professionals. 

To date, Wyatt has a long list of diagnosis. The most notable is Optic Nerve Hypoplasia, or ONH. ONH, literally means under developed Optic nerves. Generally speaking, your Optic nerves are crucial to vision. They carry the message from your eyes to your brain. The best analogy I can come up with is this, imagine you're sending a fax. The image you send through the fax machine (your eyes) is perfectly formed. Not blurry, just perfect. The receiving fax machine (your brain) is in perfect working order, too. Most of the time this means the fax comes through just fine. In Wyatt's case, the nerves that transport the "fax" are underdeveloped. That means the "fax", or the message, gets to the other fax machine (brain) unclear. His eyes work great. His brain works great. But the message is still not clear. So what gets sent is very different than what he sees. 

 

As part of ONH, there are often hormone issues because your Optic nerves are right by the pituitary gland. The pituitary gland is concerned your master gland. That tiny little thing does an awful lot. Things like controlling hormone levels, helping with temperature regulation, and essentially telling all other parts of your body what's up. Well, since the Optic nerves have some damage, often times the pituitary gland does, too. Wyatt's pituitary gland looks good. It's a little large, but not abnormal. However, it gets a little confused sometimes and has so far impacted his growth hormones and his thyroid. There are easy ways to remedy this and give him these hormones, but unfortunately cortisol, GH, and thyroid levels are levels that vary throughout the day. So... it's virtually impossible to know for sure just how much he needs. So we make educated guesses and do our best. Currently we are treating for thyroid, but holding off on growth hormone to see if the thyroid levels will help. Cortisol may be treated in the future. 

ONH is not curable. It cannot be fixed. What has been done is done. Something happened between 6-8 weeks in utero, and they can't fix the nerves. However, we can teach his brain to overcome these issues. ONH is a spectrum disorder. Some people are blind with no light perception (they can't see anything-- not even light) and others have full vision and can drive a car. Most people fall in the middle and are legally blind. They can see, but not great. We won't know what he can or cannot see until he can tell us. This is probably the hardest thing for the control freak in me-- can't fix it, won't know for some time the true impact, and we get to just sit back and wait. However, it's also the most exciting-- he gets to show us who he is! We do know he can see something since he tracks objects, grabs the dogs when they walk by, picks up toys, and grabs for toys. 

In addition to ONH, Wyatt also has nystagmus. That's the shaking of his eyes. Often his eyes will dance more when he's really tired or if he's working very hard to focus on something. In order to compensate for the movement, he will look at things from the side as opposed to looking straight on. This is how his brain and eyes compensate for the movement and we notice this often when we are doing visual activities with him. Which is why this photo is amazing...

 

He's looking at the camera. His eyes are still. And he's smiling. This was while I was talking to him-- all of these things are HUGE for him visually! We have seen a great improvement in his vision since getting the feeding tube, which makes sense. He's getting proper nutrition, which means his body can grow and develop. 

Wyatt's appointment for blood work went well today. It only took two sticks (this is amazing!) and they got plenty of blood. They took a little extra just in case someone needs some blood for something else. 

Thanks again for those of you who are just joining us. We appreciate your thoughts and prayers. If you are interested in getting email updates, please register below. If you are on a mobile device, click on the link to view web version. Enter your email in the box that says follow by email. 

Welcome

Hi. If you're new here, welcome. If you're returning, welcome back. 

I want to take a moment to thank you for joining our journey with Wyatt. Whether you're near or far, a stranger or a loved one, we appreciate you officially joining Team Wyatt in some way. Team Wyatt is what we affectionately call our tribe. Nurses, doctors, phlebotomists, Child Life, grand parents, friends, co-workers, anyone who loves our boy. That's Team Wyatt. There are members of Team Wyatt that haven't even met him and love him just the same. Regardless of your role, thank you. Thank you for loving our boy and keeping us in your thoughts and prayers. 

 

Over the next couple of days (hello spring break!) I hope to update this space to make it more inviting and more reflective of where we are now in this journey. I mean, currently the header photo is from when he was 4 days old and weighed 3 pounds 12 ounces. That's so last year. Wait. That's so two years ago. Whatever. You get what I'm saying. 

Tomorrow is a big day for our little guy. He gets his blood drawn to check his thyroid levels. If his thyroid levels look good AND he's grown enough, we will stay the course with thyroid medication. If they look poor and he hasn't grown enough, we will have to play with his Synthroid dose to get thatbstable and he will have to have a growth hormone stim test. Children with his condition (I will write a separate post about that diagnosis) often have growth issues and have to get growth hormone shots. We are hopeful we can avoid those, but if it's what he needs, we will do it. I have full confidence that Wyatt will show us exactly what he needs. 

But... I do feel a little badly for the poor phlebotomist who gets to take his blood tomorrow. There's a reason his chart says, "Tough stick- beware!"

This kid

This kid. He's been making funny faces since the day he was born. 

 

Top left: 3 days old

Top right: 6 months old 

Bottom left: 13 months old

Bottom right: 15 months old 

Big night last night... NO DESATS! He had some changes made to his BiPAP and rocked the new settings. Rumor has it, we might get to see the new floors in person tomorrow. (New floors are being installed on the main level of our house-- can't wait!)

...4/8/17...

 

I bet you can't guess where we are. 

You're the big winner if you said Johns Hopkins. 

Wednesday, while at his pediatrician for a well visit, Wyatt had a blue episode. It was pretty frightening, but it was following a coughing fit so we chalked it up to that. Thursday morning, I wasn't feeling well and neither was Wyatt, so I stayed home from work and we slept in. When I went in to check on him, he was having more desats. I had a call into his pulmonologist already about something else. When the nurse called back, he had a pretty bad coughing episode. So all of the events from the previous 24 hours showed he should be seen. So off we went to the ER. 

His chest X-ray looked good, blood gas looked good, and he responded well to deep suctioning (a nasal catheter deep into the depths of his nose... it's as gross as it sounds, but it works) so they proposed we admit overnight just for monitoring and off we headed to see our favorite nurses. 

Friday morning at rounds we all commented how awesome he looked and we just needed one blood test (dog dander allergy, in case the dogs are causing any of his breathing issues) before we could bust out of here. I ran down to grab a coffee and muffin because really, I don't function well in the morning without caffeine. 

As I returned, I noticed Wyatt had pulled his pulse ox off, which is a pretty normal occurrence for him. I turned around and he began having a coughing fit. During that coughing fit, he turned the most awful shade of blue I've ever seen. I immediately sprung into action, pushed him around and he didn't respond. I attempted to push the alarm button, but couldn't find it so I ran to grab the closest nurse or doctor. When the nurse came in, she pushed the code blue button which meant that in a matter of seconds, any available staff members were in our room. Within a matter of minutes, there were no fewer than 50 people in and around his room. They began to get the ambo bag (the fancy bag you see on tv, that administers breaths). Around that time, he began breathing and his color turned a lovely shade of red (red is good!) and they called off the ICU team (another good thing!) and slowly people began to leave because he was stable. 

It was the scariest moments of my life. I can't help but wonder what would have happened if I wasn't in the room? What if there was someone in front of me at the coffee line? What if I had to wait 30 seconds longer for an elevator? What if we had been home instead of the hospital?

 

Because of his dramatic events on Friday, he earned himself another overnight stay. We thought for sure Saturday morning would come and he would be discharged. 

Nope. This kid is a man with a plan and it's usually very different from mine. He had some significant desats overnight and it's best for him to stay here through the weekend. They are going to increase his BiPAP settings and have increased some lung therapy, as well as some nasal steroids to help with all that snot. 

I'm ready for cold and flu season to be over, this guy can't catch a break. 

Thanks for your continued prayers for Wyatt and his medical team. 

Love,

Lori, Brian, & Wyatt