Nephrology, Cardiology, Neurology, Oh My.

It's the smell of the hospital that hit me first.

Perhaps it's the omnipresent hand sanitizer, or the perpetual use of cleaning products, or maybe it's truly just the recycled air stale with sickness and bleached with sanitation, but whatever it is after a wonderful couple of months away from Seattle Children's Hospital walking back in to that wall of smell hit me harder than if I had literally walked into a brick wall. My heart rate skyrocketed, my vision blurred with tears then white washed as the blood drained from my head, and it was suddenly hard to breathe. I did not want to breathe in that air. I couldn't.

And this was just a check up.

Today we went back to Seattle Children's Hospital to re-check Miles' kidneys. You likely recall, at birth they said his kidneys were teeming with cysts and diagnosed him with polycystic kidney disease. However, a couple months ago at Swedish (where we have been having most of our care these days), the nephrologists and radiologists were only able to find one cyst and we all thought we had seen a miracle. Unfortunately, today our miracle was proven false and our faith in doctors rocked. The radiologists at Children's found just as many cysts as they did last time and couldn't explain why Swedish would have seen something different. They kept pointing out that they are the leading Children's Hospital in the country for nephrology and that Swedish likely doesn't have the technology or experience to deal with infants... and they may be right, but seriously to go from innumerable cysts to one? We are frustrated, confused and disappointed... the dangers of optimism, I guess.

On a more positive note, last week we saw the cardiologist and got some pretty good news. Though Miles' heart isn't improving and that valve is still completely failed it turns out he actually may not need his second open heart surgery until he is five or six or possibly even later. The doctor said we should be prepared for him to need it when he's two but that most of their patients with this procedure actually go much longer until that second surgery is needed. This is the first time we heard this news and it was very welcome. Taking a toddler in for open heart surgery that can't be reasoned with sounds like an absolute nightmare.  Furthermore Miles is growing astonishingly well. At 15 pounds and 26.5 inches at 5 months old he is now in the 25% for weight and over the 75% for height! Over the course of this last month, he was growing at a rate nearly double the average baby.

Last week we also saw the neurologist and we got some more good news there. Unless Miles is doing things we aren't catching, it looks like he still isn't having seizures. The longer Miles can go before his first seizure, statistically the better his chances are for a good developmental outcome. We are told time and time again to expect the seizures that they will start some day, but we are just hoping and praying for as much time seizure free as possible. Additionally, 50% of people with Tuberous Sclerosis are on the autism spectrum, but Miles isn't showing any signs of being on the spectrum; on the contrary he is extremely social. Until this appointment, I hadn't thought much of his excellent social skills because I know autism is often a degenerative disorder that hits a typical developing child in their toddler years. However, apparently, the type of autism associated with tuberous sclerosis is mostly linked with early onset autism that should be identifiable within the child's first year. So that gives us a lot of hope. Our research led us to believe the worst outcomes for TS kids were closely tied with infantile spasms and severe autism so we are feeling great about that.

If the opening of my post didn't clue you in, I have been struggling with anxiety. Though this was the first time the hospital smell triggered a panic attack, I have found that too many doctors appointments back to back and basically any weird repetitive seizure-like movements from Miles triggers them as well. This is a new thing for me and I'm working hard to find natural nursing-friendly ways to combat the anxiety which include sleeping as much as possible, abstaining from caffeine (chocolate doesn't count), avoiding internet research and support groups, and a whole lot of self talk. I've had a number of really positive doctor appointments which have educated me on seizure types and dangers and I'm under the impression I can put my guard down a bit, but wow is that hard to do.

Meanwhile Miles is growing up. Cognitively he is developing perfectly and he is getting frustrated that his body is lagging. He is behind in his motor skills and has significant torticollis with his head leaning to the right all the time, BUT, he really wants to learn to sit up and is desperate to start eating real food (I mean desperate. The kid won't let you eat anything without trying with all his might to grab it and put it in his mouth.). I finally gave in much to my chagrin (can't he stay a baby forever??) and we started with carrots yesterday and it makes Miles ecstatic. He opens his mouth wide, grabs at the spoon and flaps his little arms and legs with all the joy you can imagine. And you know what? I'm flapping along right with him. People said it would happen and they were right; though his trials run deep, his milestones are truly that much sweeter and something as bland as carrots tastes like chocolate.