Wednesday, March 30, 2011

In Doctor News

Last week, we had Collin's long-awaited visit with the endocrinologist. The quest for growth hormone began last summer when Collin's geneticist mentioned somewhat off-handedly that Collin would probably benefit from growth hormone since it can be very helpful in children with low muscle tone/strength. That was all he needed to say. We immediately started our own research, polled our other doctors, and started trying to get in with the person we saw as the best pediatric endocrinologist in the city.

It's hard to believe that I could still have been naive after a year and a half of working with the medical system on Collin's behalf, but I really did think that I would be able to just explain our situation and the doctor would approve growth hormone for us. Instead, we learned that Collin had to actually show evidence of a growth hormone deficiency in order to receive growth hormone therapy (crazy thought). There were two ways he could do this: one was to do a blood test to see whether his body made enough growth hormone. This test turned out to be a fairly traumatic experience for both of us and revealed that his body does make sufficient growth hormone anyway. The second option was to wait until he was two years old and see if he was low enough on the growth chart to indicate that his brain does not dispense sufficient growth hormone even though his body makes it. As the day for that appointment drew near, I practically cheered every time Collin's nutritionist visited and told us that he hadn't grown and I gave Collin lots of pep talks about staying short.

The endocrinologist informed us that Collin had not, in fact, grown well over the past six months. He is quite a lovely man and easy to talk to and he treated us to a thorough discourse on the pros and cons of starting growth hormone at Collin's age (few, if any, cons) and an exhaustive recounting of the studies that have been done on possible side effects of growth hormone (the short version is that there really aren't any for Collin). At several points, I was totally confused as to whether or not he was recommending the treatment, but as soon as I finally had a chance to tell him that we were in favor of starting treatment as soon as possible, he broke into a smile and said that he felt we had made the right decision but that he hadn't wanted to tell us what to do. I suppose I could have told him as much at the outset and saved him some time.

It also turns out that growth hormone is beneficial in more ways than growth curve and muscle strength. It improves the function of virtually all organs (we're especially excited about liver support since Collin has been on some major meds and the ketogenic diet is no picnic for the liver, either), it stimulates the optic nerve to grow and improve in function (see next section), and it increases appetite, which we're hoping will be helpful in what feels like our never ending struggle to get Collin to eat. Between insurance approval, acquiring the growth hormone, and getting trained in giving the shot, we're hoping to be up and running within a month.

Yesterday, Collin had a checkup with his ophthalmologist, whom he hadn't seen in over a year. The doctor had previously expressed concern that Collin's optic nerve might be pale and small and I also wanted to make sure his retina looked healthy since he is on oxygen every night now. The basic message I got, after sorting through some inconsistent comments that I suppose just come from not seeing Collin very often, is that Collin is still extremely farsighted, but that glasses would not help him at this point. Also, though most of his vision issues are cortical (originating in the brain), a small percentage could be from his optic nerve itself. If that's the case, we're keeping our fingers crossed that the growth hormone will be able to give Collin's vision a boost!

All in all, it's been a positive week in the doctor department. Collin did end up picking up a cold this weekend (I write that calmly, but I'm really shaking my fist in the air because he ALMOST made it through cold and flu season unscathed), but we're hoping is super awesome immune system will fight it off quickly and prevent a trip to another doctor.

Monday, March 28, 2011

Kinship and Perspective

I was chatting with a friend at aquatherapy Thursday when an older lady came up and started to make conversation. She made for quite a picture with her thick, black rimmed glasses, black velour sweatsuit, and jet-black hair tied in a floppy knot on top of her head. She was speaking to my friend, whose son also has special needs, and I heard her ask if he was hydrocephalic. Partly because of my judgmental streak and partly because it's just been true in my experience, I thought, Oh great, here we go. Another nosy old lady trying to figure out what's 'wrong' with our kids. I turned my attention to Collin, who was kicking major butt in the pool, and before I knew it, she had sidled up to me.

"Is that your son?"

"Yes, it is."

"Is he hydrocephalic?"

When I looked up to answer her, I thought I saw something in her face that I vaguely recognized, but I couldn't quite place it. "No, he's not."

"Is there something wrong with his neck?"

"No, his neck is fine."

"Then why can't he hold his head up?"

Deep breath. "He has very low muscle tone, so he doesn't have the strength."


We stood there for a minute, watching him splash.

"Well, I just ask because I had a baby who was hydrocephalic." My eyes shot up to her face, and there it was - that thing I couldn't put my finger on before. That undying longing to find someone who understands. The simultaneous dread and excitement when you think you may have come across someone whose situation matches your own; dread because you hate the very thought of it happening to anyone else, and excitement because there is an instantaneous bond that springs into being when you meet another parent of a child with special medical or developmental needs. I know others have seen the same look on my face in waiting rooms and grocery stores as I try to figure out not what's 'wrong', but whether we share that kinship.

Her baby had died. Thirty years ago. She shared with me how happy she was that 'they' know so much more now and can do so much more for babies with all kinds of issues. And then she was gone.

It's a sobering thought (like I need sobering) that in any other time in history and in many places in the world during our own time, my son would likely not have survived the first weeks of his life. And as I watched him shrieking and laughing and kicking in the water, I felt utterly overwhelmed with joy at his robust health and wild happiness.

Sunday, March 20, 2011

Mommy Vacay

Saturday, I took a vacation day. We had been planning it for weeks and by Friday, I was actually looking forward to it. Usually, I basically dread extended time away from Collin and home, but Friday Collin capped off a week of horrible sleep by refusing to take a nap, leaving me in an extra special state of sleep deprivation. The house was a mess, Collin still wasn't pooping regularly no matter what I did, I was feeling discouraged about his lack of eating progress, and I had been wearing the same pair of sweatpants for at least four days. It was definitely time.

I wish I could say that it was a magical and meaningful day, that I communed with nature and wrote poetry. But after the week I had had, I had not spent a single second planning my time (maybe I'll get to that point later), so I spent most of the day wandering around in various shopping centers. I don't even like to shop. I didn't buy anything awesome and half of what I did buy I'm going to end up taking back. BUT... I didn't think about therapies all day. I didn't think about much of anything and it felt SO. GOOD. I just looked around and tried some things on and watched people. I read a book while I ate lunch and didn't even go see a movie like I had planned because I wasn't particularly interested in anything and I didn't want to be rushed. By late afternoon, though, I found myself walking around Babies R Us brainstorming ideas for helping Collin with his feeding or sitting or reaching and I knew it was time to go home.

As I mentioned, this was not an easy practice for me to institute. I felt selfish and wrong for leaving my family. If I'm honest, I thought for sure that things would go badly astray if I left for long. We had to start very slowly. When Collin was little and I was still pumping, I would just go to the coffee shop on the corner for an hour and read. As he got older (and I got better at being away), I would leave for an afternoon and maybe see a movie or a take a walk. In November, Kyle urged me to take my first ever full day away by myself. I remember him actually closing the door on me when it was time for me to leave. I might have cried a little bit at first (don't judge), but once I got going, I got the hang of things and by the afternoon, I ended up buying a novel and an ice cream cone and stretching out on a blanket at the park. Not too shabby.

I like to end my vacation days with a family date. It feels like a celebration of reuniting. We meet up and go to dinner somewhere and talk about our days. It's like we haven't seen each other in weeks. We're almost giddy to be together again and I could EAT. THEM. UP. Every single time, it's good for me because I see that Collin is perfectly happy and that life goes on just fine when I'm not there, but also because Kyle realizes how hard it is to do what I do every day (the house was still a mess when I got home) and tells me so. Not to mention the fact that I come back filled up and a much better, healthier version of the wife and mother I was that morning.

Here's the preachy part: Listen up, mamas reading this. You can take a break. You must take a break. Even if it doesn't seem possible, it is. Even if you are nursing. Even if you are swamped with chores and work. Even if you have a child with special needs. Even if you have a child with LOTS of special needs. Work up to a day if you have to, but commit to some time away by yourself. You don't realize how much you need it until it's over and you see how much calmer and saner and happier you have become. If you really want to take care of your family, there you go.

Thursday, March 3, 2011

Geneticist Appointment Highlight

"Clearly, Collin is developing more rapidly than ever before."

The End.

Wednesday, March 2, 2011

On Fixing Things

You may remember Dr. Snarky. I think I can safely say that he is my least favorite doctor - not only because I hate sleep studies more than any other test, but also because I never like what he has to say afterward. Last week was the follow-up for Collin's most recent sleep study and I did my best to psych myself up mentally for what I knew would be a tough appointment. It's not that I expected bad news - Collin has obviously been sleeping significantly better since starting his 1/4 liter of oxygen at night. It's more that no matter what the report says, I always leave feeling like Collin is in trouble of some sort. And, people, I DON'T. LIKE. THAT. FEELING.

None of my self-talk prepared me for what Dr. Snarky pulled out this time, though. His hope had been that keeping Collin on oxygen for a while would somehow resolve his central apnea issue, but it didn't. Dr. Snarky's conclusion? Collin does not breathe well in his sleep, so this indicates that there is something wrong with the 'respiratory box' in his brain. Therefore, we should talk about the possibility of a ventilator. With a trach. I was, needless to say, speechless. I could feel myself grasping at all of the lifelines I use in tough appointments: "Collin is the same boy he was before I came in here;" "Collin is my son and I am his mother, no matter what;" "There is nothing this doctor can say that will separate me from Collin." It worked to get me grounded, but I still felt an almost frantic disbelief at the fact that we were having this conversation. So, I employed another tactic I've developed over the past two years. I like to call it Stone Face.

When using Stone Face, no facial muscles move other than what is necessary to blink or talk. No smiling at jokes. No frowning at bad news. It's a tough one for me, because I typically prefer to please people by reacting appropriately, but it's also very effective because it continually reminds me that I am simply receiving information, which I will later process and use to make a decision. It's so easy in doctors' offices to get blindsided, react emotionally, and end up crying and unsure of what you even talked about during the appointment.

Now, hear me on this: a ventilator would not be the end of the world. I know that. I know fantastic, happy kids who are on ventilators and/or who have trachs and I know we would all be fine. But I think that even the parents of those kids would agree with me that it's not ideal. Just like I would say to any parent facing a g-tube: if you don't have to go there, don't go.

When, at my urging, Dr. Snarky went into some more detail regarding the report, I found that Collin's oxygen saturation levels had actually increased slightly from the previous study, that his respiration rate had improved, and that his CO2 levels had stayed in safe range. Yes, he still had apneas, but being on a tiny, tiny flow of oxygen is enough to take care of the negative effects of those apneas. So, what's the problem? That's exactly what I asked. I couldn't get a satisfactory answer - only vague, scary allusions to a future in which Collin is unable to breathe for himself. So, after over an hour of pushing and questioning and listening, I took my copy of the report, figured out our next step (a tiny dose of caffeine citrate to try to stimulate the 'respiratory box' in his brain), and got the heck out of there. I cried as hard as I could the whole way home, then got home and cried some more to Kyle. And then we ordered pizza and played with Collin and felt much better.

Dr. Snarky himself actually stated quite beautifully and ironically what I took away from this experience: "As a physician, I want to fix Collin. It's easier to fix things than it is to work with them." That's why our conversation was so long and pained: because the whole time, as he was essentially saying, "There's something wrong with Collin, let's fix it," I was asking, "Why can't we work with what Collin has?" What's easiest is certainly not always what's best. And all Kyle and I want for Collin is the best. While that will sometimes include 'fixing' something (but will never include fixing Collin - he doesn't need fixing), I think it will more often take the harder and more complicated route of working with what we have. In the case of sleep, we think that what's best for Collin is to not consider the ventilator option as long as he is safe under the current circumstances. And what's best for us might be to get our next sleep study somewhere else.