Thursday, September 2, 2010
D is for Doctors
It was around Christmas time that I realized how much more time Jonah spends in doctors offices than regular kids. I was trying to schedule a playdate with some friends, and it was just about impossible with our schedule.
"What about Tuesday?"
"He has a pediatrician follow up." I said rolling my eyes. "It's the fourth time we've been to see her this month." I was expecting empathy from the other mothers. I was expecting some kind of "Oh I know, aren't doctors offices the worst!" or "Geeze, I know. Everytime we turn around little Suzy is sick- kids are full of germs!" but instead, the other mothers gaped their mouths and I heard a resounding round of
Why does Jonah go to the doctor so much? At the time I could not answer this question. All I knew was that a typical week for us could include at least two visits to the medical complex that housed Dr. M's office and the lab. Don't other kids get croup and ear infections? Don't other kids suffer from allergies? Don't other kids get strange infections?Isn't amoxicillin a staple in every household refrigerator?
No, it turns out; most families I know simply take their child to the doctor for their well visits, and some of them don't even do that. Sure there's a random flu here or chicken pox there, but for the most part their kids hardly see the inside of a doctor's office. Most kids Jonah's age have never had their blood drawn, and other mothers are shocked if they find out how often Jonah has had bloodwork. As a matter of fact, they know him by name in the lab. And he knows the drill. He is a very brave little boy and knows he is to sit in the chair and hold his arm out. He watches them insert the needle and hardly cries. He is better than his mother who passes out at the sight of a needle!
Over time, our doctors have increased. Especially after he received the 22q deletion diagnosis. In addition to our pediatrician, Jonah has a regular cardiologist, gastro-intestinal, three ENT's, two audiologists, orthopedic surgeon, developmental pediatrician, two geneticists, a craniofacial surgeon, two speech pathologists, an immunologist, a dentist, and a partridge in a pear tree. We are lucky enough that there is a clinic being developed in Columbus specifically to treat children with 22q. Right now they are just working on logistics, but all of the specialists are there. This means that in one day, we can have all of Jonah's appointments taken care of. We have been to the "clinic" twice already, with our recent trip being this past Tuesday. Our first trip was relatively short. We visited the geneticists and had more bloodwork done, this time for the whole family. It took half of a day and we were home in Toledo by the late afternoon.
This past visit was almost unbearable. From 9:00 to 4:30, we carted both kids around the hospital to see various specialists. The "we" in that sentence refers to myself and my mother in law. I was grateful for her help, but at the same time I was already irritable from the long waits and the heat and the fact that Jonah had not had a nap. There were times that I had just wished I had brought the kids by myself. Not from anything she was doing, just from the stress of the day.
Most of the visits were pretty routine. We discussed the possibility of a future pharyngeal flap surgery with the craniofacial surgeon. Although Jonah is and has shown many signs of needing this surgery, they cannot really diagnose the problem until the child is old enough to speak on cue. We will be crossing this road again in one or two years when they can more adequately see how his muscles in the mouth are working. I was very pleased that he saw the dentist while we were there. I have been growing concerned ever since I read that children with 22q are at higher risk for tooth decay, and I had a lot of questions for her. Jonah's teeth are perfect. No cavities. Although she did call me out on giving him a pacifier, just from looking at his teeth. Now I am even more anxious to get rid of it, because the effects on his teeth are clearly visible.
The ENT and audiologist were probably the most useful, which is strange because we almost left without seeing them but at the last minute opted to have a visit while we were there. I mostly wanted to see the ENT because I suspected that Jonah had an ear infection and I wanted to know for sure. He does have one (they come with every teething episode!) and so we also decided to do a hearing test, to see how his ears respond to sound when they are infected. I wanted to know if he does have periods of time when it is harder for him to hear things.
The hearing tests were just bad all around. We found out that although his ears looked normal in March, his right eardrum is now sucked in. They are suspecting something might be wrong with his inner ear of the right ear as well. He tested for substantial hearing loss in the right ear and minimal hearing loss in the left.
This means another round of audiology down in Columbus in two months.
I am still searching for just the right answer when the question of "why does Jonah see the doctor so much?" comes up. Before all I could answer was "I don't know, he is just sick all the time." But now we do know why, and I want to be able to answer people truthfully without getting into all of the details. I'm sure that one day I'll be having a conversation, and hopefully the right thing to say will just come to me in the moment. For now, we are just taking each appointment, and each health issue that is discovered during the appointments, in stride.