The notebook where I take notes at every doctor’s visit and phone call regarding Apollo’s care.
We are ten days from surgery. It feels just around the corner and an eternity away at the same time. Apollo hasn’t been sleeping or napping well since his MRI on January 18. It’s been at least four or five nights since he’s slept more than two hours straight. I feel myself slowly slipping toward insanity again. There is a reason they use sleep deprivation as a form of torture.
One of the shirts we bought for Apollo’s hospital stay.
Ten more days to: stock the freezer with meals, finalize arrangements for the other ten children, to keep Apollo healthy (we had a close call with a fever and vomiting Thursday night), to plan the kids’ school work so they have something to do while staying away from home.
I finally received Apollo’s medical records from our doctor’s office (and have since requested them from Seattle Children’s). Very enlightening. Apollo made seventeen visits to our doctor in his first 18 months of life. This doesn’t include his nine trips to Seattle Children’s Hospital or other tests. This is in a family where several of his siblings have never even had a doctor’s visit (with the exception of required physicals for our adoptions).
Shirt number two…can you spot the aortic arch?
Many posts about Apollo have revolved around his weight and more than one person has questioned our obsession with it. And as I’ve said many times, it wasn’t his weight, but his erratic gaining/growing that was the issue. Here’s a list of his weights at his seventeen doctor’s visits:
1/4/11 13.9 Apollo was six months old at this visit!
4/18/11 17.8 *stridor
5/9/11 16.4 *stridor
6/1/11 16.2 *failure to thrive/ stridor
6/24/11 17.9 * failure to thrive
7/11/11 18.2 *failure to thrive/stridor
7/22/11 17.7 *failure to thrive/stridor
9/2/11 18.7 *failure to thrive/stridor
10/24/11 19.4 *shortness of breath/stridor
12/2/11 20 *stridor
It was interesting to see that while my doctor only mentioned failure to thrive once to me (and that was to say “I can’t see calling a baby as active and engaged as Apollo failure to thrive) he actually listed it as a diagnonis at five of these visits…and you can see the number of times stridor (noisy breathing) was mentioned.
And when the ENT did the bronchoscopy and adenoidectomy in December he actually said to us, “Since he’s back on the growth chart, you don’t need to worry about a possible vascular ring“…According to my doctor’s records, Apollo’s weight was in the 1% in December. I suppose that’s technically back on the chart…but that hardly seems to the point where it would be beyond concern.
It is so very frustrating, looking at that list. Seeing how many times he was in to see the doctor. To see how much he has struggled with his weight. To know (from my research) that most patients with a double aortic arch present primarily with respiratory issues. From nine months on his sleep is listed as “abnormal“. It also mentions “decreased subcutaneous tissue” i.e. less fat. From a year old his general health is listed as “abnormal” as is his eating.
I know, I know. Shut up already. He’s been diagnosed. His surgery is scheduled. Get over it. And I’m sure I will someday. Especially after I get some sleep.