Friday, August 20, 2010

The Trend Continues

Did I say that this past weekend was crazy? I lied. It paled in comparison to the week that followed it. If anyone would have told me what this week would have held, I would have laughed in disbelief. What a week.

Our friend in hospice died this morning. His "two to six weeks" ended up being not quite five days. We were able to visit him three times earlier this week before his condition deteriorated past being able to take visitors. He was not conscious during our visits, but we were glad to get to spend the time there with him and with the family and our church family. Besides the grief at his passing, there is also our grief for three small kiddos who no longer have a daddy on earth, two of whom are too young even to really remember their daddy.

This actually was my first in-person experience both with dying and with cancer. I have known plenty of people who have died, and plenty who have died of cancer, but they have always been out-of-state relatives, or relatives who died when I was too young to know what was going on, or other not-in-person situations. (Another church friend of ours died 4 years ago - he was also dealing with brain cancer - but he died from post-operative cardiac arrest rather than the cancer itself.) It was a bit shock to experience in person, especially as I had not before seen how cancer ravages its victims. When we first saw our friend, four days after he entered hospice, I would not have recognized him had not his sweet wife escorted us to his room. And that was just one week after they went to the doctor to find out what was making him feel "off." Three days later - hospice, and he only lived one week more. Such a tragedy.

I have been honored with a request to play at the service, which will be on Sunday.

In less tragic news this week: On Tuesday, I took my midwife's advice and took our 11 1/2 month-old in to our pediatrician to go into the issue of his developmental delays. The reaction from him was immediate - Yes, there is something going on, though he couldn't tell me what it is. He is such an awesome doctor - we have the best pediatrician ever. Seriously. He's great. Anyway, he spent something like an hour and a half with us, going over baby and talking about possibilities. At one point, not too far into the exam, he said, "Hmm, this looks interesting. Let's get everyone in here to take a look." So for the rest of the time, in one small exam room we had me, our 4yo, baby, the doctor, a nurse-practitioner, and two interns. It was crazy! However, it was good and I was thankful to be taken seriously.

Our doctor ordered blood work and a host of specialists' appointments - geneticist, neurologist, developmental pediatrician, and physical/occupational therapy. I spent Tuesday night making up a control journal to keep the various doctors' offices straight, plus making forms to record phone conversations and appointments and to corral all the information - test results, contact information, personal information, prescriptions, etc. After that I felt much better! Organizing things always makes me feel on top of situations. The past few days have been spent on the phone with various offices and receiving paperwork to fill out. The form for one office alone is 26 pages! (And would be longer if he was school-age!!)

We did blood work on Wednesday morning. Unfortunately due to the volume of tests ordered, they weren't able to do all of the tests with one draw - so we have to go back next week too. Poor baby. They had me hold him during the draw - and if you know me, you probably know that I am the most squeamish person in the world when it comes to needles and blood. That's odd for someone who's hobby is actually in the medical-ish world, but thankfully homebirths occur WITHOUT needles, so I am able to indulge my passion in a needle-less fashion. Otherwise I would doubtless have a different hobby, LOL! So I held baby and kept my eyes shut tightly so that I wouldn't see anything - and I had a hard enough time not going under the table as it was! Yikes.

So we are on our way - we should know results within the next month or two, so hopefully we'll get a definite diagnosis rather than a vague umbrella term meaning "We have no idea what's wrong with the little guy, so we'll just give it a vague label." Our doc is thinking along the lines of a genetic condition, due to some physical signs that he has along with the developmental delays - things like clinodactyly (crooked pinky finger - can be normal or can be associated with genetic conditions like Downs), a simian crease in his palms (ditto), and some unusual facial morphology (close-set eyes, lowered ears, etc.). We're all taking our guesses, but hopefully the tests will give definite answers.

So this has been a tumultuous week, in every sense of the term. Worry over our baby, grief and shock at our friend's passing - the whole gamut. A week like this can go away and not come back - any time!

Love to all.

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