Eli’s second surgery is scheduled for Jan. 30.
I’m really relieved. Dipping my hands in runny yellow (and at times green) poo 24/7 is fun and all, but it will be great when his guts are back together within.
I took Eli (and Laila) to Children’s yesterday to meet with pediatric surgery and for our first appointment at the cystic fibrosis clinic.
Getting out the door was mildly insane. I need to bring regular baby stuff, ostemy bag supplies, extra outfits in case of blowouts, his enzymes and applesauce and stuff to occupy my 2.5 year old. Somehow, I didn’t forget anything and we were only five minutes late.
I also had to get myself ready for public viewing. As a postpardum mom, everyone tells me to go easy on myself, but I’m never that easy on myself. I’m stuck in one the 9 circles of fashion hell. One of them is certainly ‘poor man’s mafia wife’ – a mix of yoga pant, 5-year old Juicy Couture hoodie and running shoes. This is my “out on the town at the hospital” look. It is definitely a circle better than “I’m an adult wearing plaid pajama pants in public.” I will never go there, at least!
We arrived and I dragged the kiddos to pediatric surgery.
There I met Dr. Tuggle, Jesus mechanic of baby guts, who said he will put Eli back together again on Jan. 30.
Besides that, the best thing I learned is that we can stop pumping Eli’s poo back into his body. At 4 to 6 hours of poo pumping a day, I thought we weren’t doing this enough. Tuggle was all “That’s intense. You don’t need to do all that.”
Yet another reason to like Dr. Tuggle. Like I needed another reason – he saved my kid’s life!
I grin and bear everything about Eli’s care, but let’s be honest, pumping syringes of poo into my little boy has been a pain in the ass that makes baby mad. It involves snaking a tube into his large intestine, sucking poo out of his small intestine’s tummy bag into a syringe, hooking that syringe up to a mechanical pump, programming the the pump, priming a tube of crap, hooking that tube to the tube in his intestine, affixing a bag around his intestine’s tummy hole, caulking that bag with stoma past so it doesn’t leak. And it still leaks every time, at which point, we repeat that entire process. Plus, Eli is physically hooked to a metal pole and we can’t carry him around with us too easily. He doesn’t like people messing with his tummy, so he usually cries. No, I will not miss the poo pump.
Instead of all of that, Tuggle wants us to pump, with a syringe alone, 5 mL of rice milk and water into his large intestine once a day. Uh, yeah, I’ll take it.
The point of all of that was to get his large intestine, ie colon, working and growing. It never developed right because he had a bowel blockage that prevented anything in his small intestine from moving on through his baby bum.
Next we went to the cystic fibrosis clinic, which is on the ninth floor of the hospital.
They do things a little differently for CF patients. The first thing I noticed is that the receptionist gave me a pen and told me to hang onto it to prevent the transfer of germs. CF patients don’t wait in the waiting room, they go right back. The clinic encourages parents to bring toys from home. The people who come into Eli’s clinic room wear a protective barrier over their clothes and rubber gloves. I know this is all done to prevent the transmission of germs – CF patients need to avoid other CF patients so they don’t catch certain lung infections, for example. Still, that was all new. It brought the fact he really has this disease home, and of course, made me sad.
I heard a few of the children coughing. I don’t think they were CF patients because all infants are seen on Wednesdays…but I can’t be sure. Their hollow, rattling little-kid coughs also got me down.
It upsets me that he has to deal with any of this.
At least now I can just get sad without crying, wanting to puke or starting to pass out. An improvement. I’m good most of the time. Feeling upset passes quickly when I look at little man, hold him and and see what a wonderful baby he is. I have a beautiful, sweet daughter and a rad husband. There is so much to do all the time there isn’t much time to sulk.
I’m reminded when confronted with new CF things – something as innocuous as a germ-free ink pen (!) — that I’m still coming to grips emotionally with the fact my child has this disease. I’m a carrier, Mark is a carrier, we unknowingly combined our recessive traits and against the odds, passed cystic fibrosis along to our son. I shouldn’t feel guilty. I do any way, mostly when I’m dragging him to and fro to the hospital or messing with his tummy bags, which makes him upset.
I’ll write more about the clinic later. I hate to end on a such a bummer of a note, because today is not a bummer, despite all those sad sap things I just wrote.
I don’t have much time to write and Laila just demanded I come upstairs and play with her.
“Mommy? Come upstairs.”
She’s a little bossy.
Must be that whole first born thing.
I’m going to go ahead and do what she says while little buddy is still asleep.