It's that time of year again

Every year, the third weekend in September is a time Mr. O and look forward to meeting with parents of Deafblind children.

However, Ty started this past week off with a terrific head cold/cough and has stayed home. We are on Day 9 of his cough. Apparently it's contagious and now Spielberg, Mr. O and I are sick. We tried attending the conference and looked forward to dinner, great speakers, game night and conversation with parents, and a quiet hotel room.

However, by the end of the evening we both felt so cruddy we decided to come home and sleep (or try to sleep) in our own bed rather than risk infecting everyone. Good thing we did - we're both wasted, downing the Sudafed, and considering buying stock in Kleenex with Lotion.

I haven't run since Tuesday night. Wednesday I picked up my sister from the airport, Thursday I helped babysit another sister's kids, on Friday and Saturday I felt like death warmed over, and the prospects for tonight aren't looking much better. I am determined to run again before Tuesday.

Harrumph

Ty has gone back to school and it has been an interesting start to the year. He has an amazing teacher and a great new Communication Intervener, and we count ourselves fortunate for this.

However, we had a nurse who felt a little out of her comfort zone having Ty on her files. She called the district head nurse who, in turn, called me. It was not a pleasant phone call. She pretty much told me that she was recalling his IEP to determine placement options. In other words, she wanted to move him to the self-contained school that has nurses on site everyday to reduce her nurse's liability. The very same place I had fought so hard to have him removed from back in second grade as he pretty much shut down there.

We had just had a meeting this past Spring with a roomful of people to determine that the local high school was the appropriate place for him, so I wasn't too worried. But I'm frustrated that I let her get under my skin - she was completely inappropriate in how she handled the situation - and for that matter, so was I. I ended up raising my voice and using an actual (although mild) cuss word.

I try never to do that with the professionals that work with my son, as it costs me some serious respect points if I do. She said she didn't have to continue to listen to me, instead she was going to call her higher-up (with whom I am very well acquainted, and I knew she'd have my back) and give them her two cents. I told her to go right on ahead.

Even though Ty had been perfectly fine at the local junior high, she felt high school was a whole 'nother matter. Her reasoning made no sense to me. None. And I was furious. I think I actually saw red. Do not, I repeat DO NOT mess with my kid. She should never have called me directly except to update his medical file and she has no actual authority to determine his placement on her own. I had a moment of panic and extreme frustration (to put it mildly) and called for reinforcements.

I wanted to make sure the teacher was still comfortable with having Ty in his class (he was) and that things were going well (and except for a case of butterflies and nausea on Ty's part, it was). In fact, the teacher, his coordinator and intervener were all surprised and unaware that I'd been called. They all reassured me that he was staying. And stay he has.

Seminary is my next battle. It's a complete philosophy change from the junior high to high school. One that I'm hoping to change.

It's Probably Nothing...

but Ty's legs appear to be swelling. I'm not sure if he's just bulking up from the new formula or if it's fluid retention. I'm not used to seeing him so filled out.

My mothersense is tingling, so I'll probably take him in to the doctor this week.

He starts High School this week. I can hardly believe it, I have butterflies in my stomach for him. Since it's a new school, new teacher, and new intervener for him I'll be attending school for the first couple days with him to show everyone the ropes.

We go over how to communicate with him, feed and change him, how to reposition him no detail is overlooked, but still my heart skips a beat when I turn him over to the faculty. And then I go home and try to remember how to breathe.

On decisions

I tend to over analyze everything where Ty is concerned.

Okay, maybe I over analyze everything, it's just how it is. I like to cover all the angles before making any big decisions. What follows here is one of these situations. I apologize that it is long and most likely boring to any who read it, but it is our latest conundrum.

We visited with Ty's rehab doctor this week and the subject of his increasing clonus and focal clonic seizures came up. Increasing his oral baclofen is not an option, he is on a maximum dose which leaves him fatigued much of the time and affects his ability to void urine (aka pee). His doctor suggested that we attempt placing a baclofen pump on the other side of his abdomen. The one opposite his tumor, the one that developed the last time he had a pump placed. I KNOW.

Theoretically, the tumor was a one in a million (well actually 2 in a million) occurrence. We know he does not have the syndromes associated with desmoids so it developed from trauma (surgery or pump), but he has had numerous surgeries that have healed normally.

We thought that once he had his spine fused that he would not be a candidate for a second pump (makes it sort of challenging to get tubing into the intrathecal space when a steel rod, bone graft, and associated wires are all in the way). But no, the doctor mentioned that they have the option of threading the tubing from the pump over the top of his fused vertebrae. Meaning that they would insert the tubing at C7, but thread it down through the intrathecal space until it reaches the level of the spine that would specifically address the muscle tone in his lower body.

The advantage of delivering baclofen in this manner is that he can be on a micro-dose which will not have the same side effects (fatigue, bladder issues, etc). Currently the medication has to cross the blood-brain barrier so he takes a very large oral dose.

All of this to say that
a) if they can do the surgery without disturbing the tumor (a very big IF - it's the sort of tumor that will wake from its deep sleep and likely become aggressive again and this time he wouldn't be able to have any more of the chemo that actually worked to shrink the tumor and it could necessitate major surgery to resect it. big breath)

b) it will provide more pain relief to his hip without the nasty side effects of narcotics which may be triggering his seizures

c) but no one knows if it will produce a second tumor or flare up the one asleep

I honestly don't know what to do. We both don't.

I think I am a little bit immobilized by fear. Fear of the unknown. Fear of leaving him in pain. Fear of stirring up the hornet's nest that is a now-asleep, yet formerly aggressive tumor. And lastly, fear of putting my own currently calmed down life ahead of my son's potential pain relief/comfort.

Right now I'd like a lightning bolt or a crystal ball, but most especially a strong whispering in my heart.

Run, do not walk

You must go here and read Lisa's post.

I wish I could print it out and carry it with me to have on hand. I'd wager that most parents of disabled children feel most of these things at some time or other. In case you've ever wondered what do I do, what do I say - read this post.

Dreams and such

I routinely dream about Ty. And they are such vivid dreams, too.

There is the one where Ty is not quite ready when the bus arrives to get him for school. Normally his bus driver just waits for us if the garage door is up, but in my dream there is a substitute bus driver. He only waits the requisite two minutes before pulling away.

I end up giving chase in my pajamas, arms waving wildly hoping to get his attention. Sometimes I am successful and he pulls back around to pick up Ty. Inside the house, it is a mad dash to get him in the chair and out the door before the driver gets impatient and takes off again.

There are also the dreams where he is a regular teenager and does regular teenager stuff. He drives a car, hangs out with friends in the basement family room, drinks milk straight from the carton, has real homework, and talks to me about girls. I love these dreams.

Recently, I've been having one where he is young again - about 10 or 11. He is on the floor and as soon as I dress him and tell him it's time to get in his chair, he rolls on to his side. Then I help him roll to his stomach and kneel up. He leans against me and hugs me tight while I help him slowly rise and then sit in his wheelchair. He looks directly at me and gives me a huge smile filled with appreciation. The hug and the smile are my favorite part.

He is not healed in this dream, but because he interacts with me more than he does in real life, it's one I hold dear. Ty is one of the most patient, loving people I know. I don't care that it sounds strange, but I think these dreams are his gift to me. They are his way of reaching out to me and communicating on a deeper level.

Remember back when I asked for a nice slice of Boring?

It turns out that such a thing does not exist (or if it does, it is not very filling nor is it long- lasting). I have taken Ty to the doctor at least 6 times in the past three weeks. We are trying to solve the mystery of his pain. So far, we have been unsuccessful.

We have tried shots and a new medication with fewer side effects, all to no avail. Add to the mix his bronchitis, which is finally coming around after 3 doses of antibiotics (one of them he had an allergic reaction to - lovely!) and the fact that he is having difficulty with peeing. I've had to cath him for several days, but his urine samples test negative for any signs of infection (phew!). So, mystery. The good news is that his g-tube has stopped leaking so much now that his cough is subsiding.

During Ty's chemo and major surgery recoveries, we put the other kids' lessons on hold - it just wasn't logistically possible to be so many places at once. We're making up for it now with volleyball 4 nights a week and dance 3 times a week. Throw in some church callings, service, regular errands, doctor appointments and we are hardly ever here. I'm not complaining. I'll take this kind of hectic over watching a child go through chemo any day. Any day.

It's just getting the best of me. I am still feeding the family, staying ahead of the laundry (as much as one can), and even occasionally sweeping a few dust bunnies into the bin. But! I am sick. I've been ill, except for a 3 day reprieve, since early February and I am just tired. Very, very tired of being sick. So I'm telling this mung to take a flying leap. Leave! Be gone with you!

Anyone think that will work?

Update

The roads were sufficiently icy this morning to tack on another 20 minutes to our hospital commute. We met with the surgeon who was actually very impressed with Ty's g-tube site. He has ordered one with a slightly longer stem and we'll see if it slows down the leaking.

The surgeon feels that because Ty is sick right now his stomach is taking longer to empty, and that the leaking will most likely resolve itself once his cough is gone. Or it could be the pain meds slowing things down. We did find out that he won't perform a third Nissen on Ty, so if the current one fails and he is able to vomit via his mouth again we'll have to explore a different option. One of our options is to put him on continuous pump feeds and a second option is to bypass his stomach and have a j/g-tube placed. Which ever it ends up being, I hope it's a very long time before we have to consider either one.

G-tube complications

First, let me say that I love the fact that Ty has a g-tube, it's our back door, so to speak. He used to eat whatever we ate, just blended up with a little milk to thin it. But then chemo changed his mind about eating anything other than Pop Rocks and Cotton Candy. Now we feed him an enteral formula every three hours from 9 AM to midnight.

This latest round of bronchitis has somehow changed how his button (g-tube) functions. He is swallowing a lot of air and it is trying to escape around the opening for the button. Last night, formula and stomach acid began leaking out a little (and by that I mean profusely). We now have an appointment to meet with the surgeon early next week. He's going to measure Ty for a new button size. Meanwhile I need to keep Ilex cream on his stomach around the opening and feed him smaller amounts every 90 minutes. Oh joy!

Hopefully, he'll get rid of his cough in the next couple of days and that will slow down the leaking.

The House of the Rising (Fever?)

Ty has joined the ranks of the sick and afflicted. Everyone but me and Spielberg has had a fever of 103 (or 104) in the past week. Ty's came on suddenly and was accompanied by a horrible cough and boatloads of mucus.

He has, so far (knock on wood and all that jazz), never had pneumonia. I'm keeping a close watch though. The past two nights I've been playing Florence Nightingale and lifting his head to his chest every time he coughs (it's the only way to get any of the crud out). This means I do not keep conventional hours. I think it was somewhere in the neighborhood of 4:27 AM that he finally rested enough for me to feel comfortable with hitting the sack. Mr. O is home sick with it as well and took the morning shift with Ty, and I squeaked in 4 hours of shuteye.

Ty usually only gets sick once per year, so this is it. He's giving it his all.
***
In other news, he recently had both a cortisone shot and a phenol shot to his left hip joint in hopes of lessening the pain he's been experiencing. Something has happened since his surgery, we're not sure what, that is causing his hip to grind bone on bone whenever we move him.

The shots seemed to have helped with decreasing his pain when we move his leg from side to side, but when we move it up and down (like when we are dressing him or putting him in his chair), we still have to scrape him off the ceiling.