Emlen is doing well - at least physically. The sinus surgery was a success. Thank you for asking. We got back from the hospital mid-week. It was a much shorter stay than expected. The next morning, after sleeping for twelve hours, Emlen announced that he could feel air moving on the back of his throat when he used his nose to breathe. I had to think about that, because the sensation is pretty normal for those of us with open sinus cavities.
On the other hand, there have been some psychological ramifications from having surgery scheduled two weeks into the first year of middle school. Calling it anxiety would be putting it mildly. It has been drama. Emlen’s nervous tummy is back. He refuses to eat. That spirals into not having any energy to deal with, well, EVERYTHING. This morning, with a big sigh, as he stared at his whoopie pie breakfast (at this point I am not even asking him to eat something “healthy”) he wondered what was going on with his body. I know what is going on. He was pretty much tortured for three days and now has to get used to school all over again. Yesterday, it was all about the lunch tables and who was eating where.
I suppose it will get better, a little bit every day.
Thank you for the hospital visit care package. Emlen tells EVERYONE about his emergency underwear. I am trying to get him to put them in his backpack to be carried with him at all times. I think it would be funny; reminiscent of when the children carried zip lock bags of extra clothes everywhere. But he declines with a huge eyeroll. Apparently, we have come to that age where I am beginning to embarrass him – all the time. I asked him this point blank yesterday, if we were finally at that age. He rolled his eyes while nodding, which is quite hard to do. You should try it. I did. That embarrassed him too.
And thank you for my socks. I LOVE them, pink and blue "Bitches get Stuff Done" socks. Perfect. Henry was a little worried that I would wear them in public. He announced that I could wear them the same way I wear my Nordstrom NBA branded Golden State Warriors Stephen Curry socks, with long pants and tucked well into my over-the-knee-high boots. Then he realized that the lettering was on the toes and no one would see it. I am wearing them today.
Today is a get stuff done day.
And my feet are cold.
I think I have recovered from the whole moving into the hospital thing. It has taken a while. Mostly, because even though you are finally home, and it is nice to be home, there is still tons of medical follow up to do. The ENT who performed the surgery pulled tons of "infected Emler’s glue-like puss" (his words) out of Emlen’s nose. The cultures grew staph* and steno* which totally makes sense as these were the two bugs Emlen has been dealing with for the last year. Now he is on a pretty high dose of two oral antibiotics (Yay! No IV antibiotics!) to try to take out any of the bacteria left in his nose or that happened to be knocked loose during the surgery and is now trying take up residence in his lungs.
(Maybe that is why his stomach is upset all the time? No. He was fine last week while he was home, recovering and not at school.**)
Then of course there were piles of undone laundry, bill paying, grocery shopping, and emails to tackle. Here is my status: the laundry is back on track, the bills are paid, the pantry is stocked (we do not really have a pantry, but it is a nice way to sum up hours of food shopping, organizing, preparing and cooking. One little phrase.)
Oh, and, Henry is complaining that he does not have quite enough football to watch on Sundays. Hulu is not cutting it. He misses NFL RedZone. We will have to explore more non-Comcast options for him. Add that to the list.
I am almost caught up on emails. The big one that caught me off guard was the middle school band teachers inviting Emlen to join the Wind Ensemble. I thought it was odd, because Emlen plays the drums. But after a bit of back and forth I figured out that “Wind Ensemble” is just a fancy name for “Advanced Concert Band”. After some thinking and asking a bunch of questions, (Are there other 6th graders in the band? What is Masquerade Night? Do I need to wear a costume? Do we take a big coach bus to NYC in April?) Emlen decided to do it. I just spent the last hour signing Emlen and Christian up for the NYC trip. It is three days of concert band, orchestral and jazz music, nice restaurants and Broadway theater. Christian is going to tag along to help train the middle school nurse in all things cystic fibrosis (CF). Hopefully this will allow Emlen, in a couple of years, to head off to Washington DC on the eighth-grade class trip without his parents tagging along. Christian will also be in charge of eight other kids. Chaperoning! Fun? (At least it will be for me. I will be at home being silent. Maybe Henry and I can go to Nordstrom and buy more socks. They should be on sale by then, because it will be spring time and NBA season will be over.)
On top of all the household chores (I swear some days I am just a maid) I had to jump right back into getting Henry to all of his medical appointments. I think I mentioned them last time. Braces off. Retainer molded and fitted. Yearly well check and flu shot done. We saw the ENT too. I would love to have wrapped that up with a simple long course of antibiotics, but it seems that there is going to be some more follow up. After some poking and prodding the ENT concluded that Henry’s sinuses are perpetually inflamed as evidenced by a developing polyp. (What is it with this family?) That is going to lead CT scans, more appointments and possibly surgery. Please cross your fingers and hope that it is a mere outpatient procedure. It will probably take forever to coordinate.
In the mean time I have tasks looming, future tasks, not catch up tasks. Swim team starts in a week. It will be good to get Emlen back in the pool. He is always calmer after swimming. Our first meet is in a month and it is time to get the Thoreau Sharks Ribbon Committee back together. Ribbons need to be cut. Hundreds of firsts, seconds and thirds place ribbons are waiting, still wrapped on their spools. And, we need to order a gazillion participation ribbons. I think we only have a few remaining from the summer. Then those will need to be cut. I do not mind. I still love my pinking shears, and it gives me an excuse to watch TV. But you already knew that. I just finished the whole West Wing series, so if you have any suggestions for something new that would great – on Netflix, since we might dump Hulu because of Henry’s whole not enough Sunday football concern.
And art projects have entered my head. Sketches of string wrapped antlers, copper wire, mica, CF med vials, burlap, mushrooms, like the fish from ages ago, are scattered through the house on sticky notes. It has been a long time since the studio has been calling to me. I am not sure why now. I have a lot going on. Perhaps because I all but retired from the interior design career. I have only one California client left. As I said to him last month, while we were finding a garage door for his house on the hill, “for him and only him.” But whatever this art thing is, it is worthy of getting a sketch book and exploring. At least it will be a place to store the sticky notes.
Ack. I just got off the phone with Henry’s ENT. According to the CT results, his sinus cavities are worse than Emlen’s. They are recommending the same surgery that Emlen had. On top of that they want to do some genetic testing to confirm that Henry does not have CF. Great. I am almost one hundred percent positive that he does not. He has none of the symptoms other than a polyp and sinus inflammation. But can you imagine? However, it is likely that he is a carrier of a CF gene. Which one would be the question; my gene, which partially works, or Christian’s gene, which does not work at all? There are theories floating around the CF medical community that if you are a carrier of a CF gene you may be more prone to CF-like symptoms such as exercise and/or viral induced asthma, sinus disease, GI issues, and excessive sweating while not actually having the disease. (I believe them. I think that answers my question: What is it with this family? It is the CF gene.) However, as our pulmonologist says, it will take time for the rest of the medical community to catch on. Maybe they can follow Henry and see how his health progresses? Maybe even for free. He can be a very tall science experiment.
Say hi to Miranda, Iris and Tim,
PS. While editing, I read an article about a man who was diagnosed with CF in his thirties. He and his wife were having trouble conceiving. It turned out he was infertile, as so many male CF’ers are. It was not the infertile part that caught my attention. We already knew about that. It was the late diagnosis part. How could his doctors miss that? A mild case maybe? Did he have any symptoms like sinus issues and polyps? Who knows. The article did not go there. But, given what is going on with the Henry’s nose, the ENT and genetic testing, I think I am going to go back to bed. Please wake me when it is over.
*I shortened “staph” and “steno” because I can never remember the names of the bacteria we are dealing with. You would think I would be able to after seven years of this. Denial? Oh yes…
**We finished the courses of antibiotics two days ago. Emlen still had an upset stomach this morning. It is not the meds. Just nerves.