I Can Be Mean

This is a place meant for children– sick children. The sickest children. There aren’t colds and sniffles and chicken pox in these rooms, there are diseases and cancer and babies in need of surgery. There is no priority level, because they are ALL top priority, as every parent will tell you.

And, as doctors in a hospital meant only for the sickest of children, their level of care should be second to none. They should be on top of things. They should be seeing around corners the parents haven’t even thought of, obviously, because the doctors are the ones with the medical degrees.

It should not fall to the parents to ask for their child, who has been diagnosed with a large hole in their heart, for the cardiologist to come back, after not seeing them for a week. It should not fall to the parents, who have been mentioning the infection in their child’s eye for the 10 days, to finally call for the on-call doctor to examine it, who orders moisturizing drops and an MRI to look for nerve damage.

It should NOT. FALL. TO. US.

It’s a running joke in my family that I’m the “nice” one, and once, in a conversation about this attribute of mine, I apparently said, very pitifully, “I can be mean!” I’ve smiled sheepishly every time this is brought up, but now, I’m ashamed.

I have to be mean. Niceness gets you nowhere.

Assertive is probably the word I’m looking for, but the sentiment is the same. I can’t lay down and assume that because they went to school a lot longer than I did, that they know everything and they are doing the right things. If I feel my son is being brushed off, I need to tell them.

Kindly, but firmly.

After learning Jack had fallen through the cracks, and the cardiac team didn’t realize he still needed to be looked at for the massive hole in his heart that is still causing him to breathe fast, regardless of how much they up his meds, the on-call cardiologist finally looked at him. They’re giving him until the beginning of next week for the meds to work, and if not, it’s time for surgery.

Yes. YES. I want surgery! That’s wrong to be rooting for open heart surgery on a 3.5 week old baby, but dammit, my kid can’t even eat without puffing away like he’s running a marathon. He’s going to forget HOW to eat without a tube injecting it right into his belly. His poor heart is working too hard; it needs to be patched, and NOW.

After we were forgotten about by the geneticist last week (insert blinding rage), she finally came today. She confirmed the parental diagnosis I made last week: Jackson has something called VACTERL Association.

The letters stand for:

Vertebrae Anomalies
Anal Atresia
Cardiac Defects
Tracheoesophageal Fistula
Esophageal Atresia
Renal Anomalies
Limb Defects

These seven types of defects are commonly seen together, and when 3/7 are seen in patients with no other chromosome or genetic problems, then a diagnosis of VACTERL Association can be made. It is associated with normal development and normal intelligence (TEARS OF JOY AND RELIEF), and it wasn’t preventable– it has to do with blood flow at certain parts of early development of the fetus.

Jackson has three letters: CRL. He has a hole in his heart for the cardio, a cystic left kidney for the renal, and his sweet lucky fin for the limb defect. And, honestly, reading about all the things associated with this, and the other anomalies that he could have been born with… he’s got it pretty good. His right kidney is totally on top of things and doing the load of two, and once we patch his heart, he’ll be good to go. They say it’s a fairly common heart condition for kids.

His hand? Yeah, it sucks. We’re not thrilled, and he won’t be either, when he realizes it. But, after the last three weeks, I CAN’T WAIT to only be concerned about his hand, rather than his heart or his chromosomes. A hand? Small potatoes.

Me? Oh, I go from being Positive Polly, to wanting to jump off a building. Can’t help it. This roller coaster isn’t fun, and the incompetence in his care hasn’t helped. Neither does the fact that I only get to see my daughter in very limited quantities, or only get to see my husband for 20 minutes as we switch off duties from one kid to the other. Makes for a very stressful time, and a very short fuse for me.

I’m trying to take it one day at a time, and know that we will eventually take him home, and be a family again. It’s just hard. Sydney does not remember she even has a brother.

End of ranting. This started out so purposeful, and dissolved into a general outpouring of thoughts.

What can I say? I’m laying on a plastic couch, listening to a number of different and random beeping noises, as well as a poor crack baby cry in the next room (the walls are thin, I hear things).

Again, I’d so rather be laying in my own bed, super pissed at Justin for snoring, and getting up for a midnight feeding with my newborn.

We’ll get there… won’t we?