The final diagnosis was a kidney infection. The blood cultures came back negative and he was displaying many symptoms of a kidney infection. Given his previous diagnosis of ureter reflux and hydronephrosis of the kidneys, it makes sense. Poor guy was really fighting that infection hard.
He was fever free since last night and had tolerated the oral (well, feeding tube) antibiotic, and his most recent blood work was very reassuring, so we were sent on our way.
He’s snuggled in for bed and we are hoping his little vacation to Hopkins doesn’t totally mess up his sleep schedule.
It’s a view that is comforting and familiar. But a view that brings some anxiety as well. It’s the view from Wyatt’s room at Hopkins.
Saturday he had another febrile seizure and we ended up in the emergency room because his seizure was drastically different than the first febrile seizure. This time was more shaking and less unconsciousness, no dramatic ambulance ride and a worried mama scratching her head saying, “I think it was a seizure, but maybe not?” It was confirmed Saturday night that it was a seizure caused by his fever. They ran some tests, he looked better, we were sent home with the rather uninteresting label of fever of unknown origin and told us to watch him.
Sunday was more of the same, fever but no real reason for the fever and LOADS of snuggles. Fever responded to Motrin/Tylenol if he got too high or was super uncomfortable.
On Monday, we followed up with the pediatrician because his fever spiked above 104 (my personal threshold— I get really anxious at that point) and we took him in to be seen. Ran some blood tests and his white blood count was high, which meant he was fighting an infection of some sort. Pediatrician gave us an antibiotic and told us to keep an eye on him, but take him in if we felt like we couldn’t handle it.
Monday afternoon he spiked to 104.8, the highest he’s been and after a few calls with his pediatrician and our nurse, I called it quits and brought him to the ER.
They ran some additional blood work and urinalysis and there is an infection for sure. The fear is it may be brewing in his blood, which is much scarier than we had imagined. In addition to the infection, his feeding tube may have finally kicked the bucket, as he just started leaking from the stoma. So we have asked GI and the surgical team to consult to see if we need a new tube. The difficulty with his GJ tube is that it can’t just be placed bedside, it requires sedation and in Interventional Radiology. And we all know how he does with sedation.
We are crossing our fingers that the blood work does not show any growth, that his urine culture tells us exactly what bacteria it is and we can treat that bacteria, his tube requires minimal fixing, and he continues getting healthier and healthier.
It's his seat! He had to help me read the directions to make sure I was setting it up correctly. Which is super difficult when he won't actually let me look at the directions.
But look at him in it!
A HUGE thank you to the Dixon Kaylor Charities for donating this seat. You have no idea what this means for our family. We can now have him sit safely in a restaurant with us. We can put him in the grocery cart and he can see things! He can sit on the floor at home and play with his toys, dogs, and his new xylophone and drum(I can't wait to get video of this!). He can access his world in a different way, a way that is more developmentally appropriate than sitting in an infant carrier. It also means we can transition him from his infant car seat and into the convertible car seat, which is perfect timing since he's just shy of the height limit.
We will forever be grateful for the generosity of the Dixon Kaylor Charity.
No big deal, guys. Just feeding himself sweet potatoes.
You guys. It's NOT avocado (he's obsessed) and he's doing it himself! Plus, he looked at the bowl and the spoon. Not bad for a kid with a visual impairment.
We had an ophthalmology appointment this week. The good news is, everything looks stable. No change. Which we expect*, based on his diagnosis, but we all know Wyatt is pretty much a medical mystery so we have come to expect the unexpected with him. The bad news is, we have to go back in six months. We were hoping they would say a year, since dilation is super annoying for a toddler and the eye exam is miserable for both of us, since I have to pin him down while they perform it.
*Optic Nerve Hypoplasia is simply underdeveloped Optic nerves. They shouldn't change at all since it's congenital and you can't regrow the nerves. The issue isn't with his "vision" since his eyes are great and his brain looks fine. It's simply that the nerves don't send the message correctly from his eyes to his brain. However, what he can "see" CAN improve, since you can train the brain to interpret the message the eyes are sending. It's a very complex way in which we see, and since his Optic nerves are underdeveloped, he has a harder time navigating those complexities. But, he's showing us we can never underestimate his willpower!
His wheelchair, stander, and bath seat will be delivered this week. I'm really excited for all three of these pieces of equipment. The wheelchair will provide support for his torso and neck, allowing him to sit up to see the world better. Talk about awesome! It will also allow us to safely push him around. While his current stroller isn't completely impractical, it isn't supportive enough and this will allow us to support him better and we can always remove some of the supports as he develops more. The stander will allow him to practice standing in a safe way and allow us to interact with him without having to hold him. I suspect he will tolerate it about as well as he did when we tried it out at PT, which involved protesting and attempts to lift his legs. And the bath seat. Oh the bath seat! We will finally be able to bathe him safely. He is currently in a bath seat that is too small and has no safety straps, which means in a blink of an eye he could roll off and have the potential to aspirate or even drown. Needless to say, baths are not my favorite time because it's a little scary.
We also got great news this week that a charity has graciously offered to gift Wyatt a portable seat. This seat has the potential to be life changing in terms of his ability to interact with his environment as well as keep him safe. The seat can be used on the floor, in a chair, in a shopping cart, and so many other places. I'll snap photos and post an official thank you once it arrives. We are completely in awe of their generosity, as insurance doesn't cover many items he needs.
He has a cardiology appointment in two weeks. We anticipate things will go smoothly, as he's not showing signs of cardiac issues. However, it's always a possibility that something has changed, so continued prayers that his heart has remained stable.
So things have gotten pretty interesting around these parts. I know I promised you a video in the last post and I think maybe I figured out a way to link videos, but he has an even newer trick (well, a few... actually) that I want to share.
First up... check out that attempt to stand!
This is HUGE! Because of his hypotonia (translation: low tone, which means his muscle tone is low. It's often referred to as "floppy baby syndrome") Wyatt has often looked more like a wet noodle, and often keeps his body curled or tries to put his feet up in the air when you attempt to make him stand. Recently he decided he wanted to push his legs down rather than keep them up, resulting in attempts to stand. While this often comes naturally for many babies, it's not ever been Wyatt's norm so to see this progress, we are ecstatic! Our infants and toddlers PT started pushing him a bit to stand (with LOTS of assistance) holding on to furniture.
Then there's this...
He's attempting to feed himself! Holy smokes, you guys! And it's not avocado. He's branched out to butternut squash and he actually likes it! I will say, mealtime is much more interesting, and messy, now that he wants to help.
When we got the feeding tube, he didn't want to eat orally. Then we took a step back with all of his illnesses in case he was aspirating, causing pneumonia. We reintroduced foods and he did well, then he got sick again and refused to eat. We tried again and now he's trying to feed himself.
Then, there's this...
WHAT?! He's showing beginning signs of crawling! This. Is. HUGE! This guy is a fighter and he's ready to move mountains. Not that any of us doubted that.
To say we are ecstatic would be an understatement. The last 21 months, we were never sure when, or if, he would do these things.
This kid? He's our lemonade. Life has handed him some lemons and he's making lemonade!
