In and out at Children’s

Yesterday morning, I was back at Children’s Memorial with Colin. His surgeon wanted to do a quick follow-up procedure to make sure the urethra was healing properly internally. And to do this, Colin needed to be put under — so technically it counted as another surgery. Because it was a surgery, we had to go back to the pediatrician on Monday for the pre-surgery physical. Then we had to wait until mid-day on Wednesday to find out when we were scheduled. Colin couldn’t eat after midnight on Wednesday (not a problem since he finally has given up his middle of the night bottles), and we were off to the hospital bright and early for a 6:30 check in.

This has now become almost routine for us. I have down exactly how quickly the traffic moves that early in the morning on Lincoln Avenue. I know it’s worth the extra dollar to valet park the car instead of trying to find a spot in the garage across the street. I finally know my cell phone number so I don’t have to look it up for the concierge when we check in. (Don’t laugh — I never use my phone so I didn’t know the number until last month.)

I can rattle off Colin’s medical history in my sleep, and have the explanation for the most frequently asked questions about him: 

• Why is he so small? 
• Why does he have chronic lung disease? 
• How long was he on the ventilator
• What medications is he on? When did he last take them? 
• When did he see his pulmonologist last? 
• Did he have any trouble coming off anesthesia in the past?
• Does he ever stop moving?

The last one seems to come up just as often as the others. And the answer is, “No, not really. He’s pretty much always on the move.”

I also feel like I can explain the pre-op routine as well as the anesthesiologist at this point. But I always let them go through their thing. 

So they took Colin away for anesthesia and I headed over to the waiting room to get a cup of coffee. I didn’t bother to bring anything with me this time, because his doctor was only expecting the procedure to take about five minutes. And he was right. I finished my coffee, got about 15 words into a magazine, and the surgeon was there giving me the update. “Everything looks good. Really good.” He looked quite pleased with himself — as well he should be. 

So we’ll go back and see the doctor again in about six months to make sure everything has continued to heal well. And at that point, we will talk about what could be Colin’s last surgery — just a little “landscaping.”

New pictures

I have no energy to write anything today. But I did finally get the pictures downloaded. I’ve put some here and some on the Photos 2 page. 

Enjoy.

The photo I promised of Roni, all dressed up.

Colin reading a catalog — back when only Roni’s shoes would fit over his orthotics.

Twins in a basket

 

Dress up girl

From my blog entries of late, you might think that poor Veronica is getting lost in the shuffle with all of the attention Colin’s surgery and related appointments have required. But fear not, baby girl has not been forgotten (or ignored). First of all, she is way too good at demanding attention to ever be ignored for more than a couple of minutes. And second … well I may be a little biased here, but she’s way to funny and cute to be overlooked. 

In fact, Veronica has really enjoyed having Colin out of the way, especially while Ethan is at school and she gets to be queen for the day. These interludes of being an only child suit her well. The day of Colin’s surgery, when she had the longest solo time, she was dancing and singing everywhere. She has quite enjoyed having Mommy or Daddy or Grandma and Grandpa to herself. 

Veronica very much likes to “dress up” in John’s or Ethan’s or my clothes — mostly our shoes. She has gotten quite good at walking around wearing my big shoes on her feet. And if Ethan forgets to put his in the closet, she is in little girl heaven. (He gets quite angry when the babies play with his shoes, so we’ve been working on remembering to put them out of sight.)

Veronica also likes to accessorize. The other evening, playing after dinner, she was wearing a firetruck jacket I bought for Colin (at a garage sale, before they were born). She had her hat on just so (she does it herself now), her three-sizes-too-big boots that light up when you walk, and my silk scarf and strutting around the living room all proud of herself. She wouldn’t let me take her ensemble off until we were getting ready for bed (and even then I had to distract her with her favorite book — Please Puppy Please). 

Luckily, I had the camera handy and was able to get a shot of her “new look.” Unfortunately, the photos are stuck in the camera for the moment because I can’t find the cord to connect the camera to my computer. So … photos to come at a later date. 

Still healing well

This has been another week of nonstop appointments for Colin. Monday was his monthly OT session. (He’s doing great and right where he should be with his fine motor skills at this point. She doesn’t see any back sliding from stopping his weekly sessions.) 

On Tuesday we had to take him to the pediatrician’s office because he developed a mystery rash over the weekend. 

Wednesday we had a break. 

Yesterday, we had PT in the early morning, then Colin went back (again) to see the surgeon for a check on how things are healing. It is good that we live so close to the hospital, because this is how yesterday’s appointment went: 

Dr (at last week’s appointment): I want to see him again on Thursday next week for a quick check. I’m in surgery all day — here is the phone number for the surgery. Start calling at 8:30 and I’ll let you know when I’ve got a few minutes free. (He does know we live close by.)

So we called at 8:30, and at about 9:10 the surgeon called. “How long does it take you to get here?”

Me: “About 15 minutes?” not, of course, taking into account the need to park the car.

Him: “Great. I’ll see you in 15 minutes. Come straight to surgery on the 2nd floor — don’t check in! Just tell them at surgery reception that you’re here to see me.”

And so John and Colin were off — no diaper bag, toys or phone. 

We have to go back again next week on Thursday and he’s going to put Colin under so he can do a closer, internal examination of the urethra to make sure it’s healing properly. It will only be a five minute procedure, but since Colin will need anesthesia it involves the whole “get your pediatrician to fill out the form saying he’s healthy enough for it, don’t let him eat or drink ahead of time, wait in recovery until he’s kicked the last of the anesthesia effects” process — again.

So while I take Colin to the pulmonologist this morning (in the suburbs, because we couldn’t get an appointment in the city until the end of April), John will be calling the pediatrician to find out whether we need to actually bring Colin in for his pre-surgery physical, or if they can fill out the form without seeing him. I also wonder if his rash will pose a problem, because the surgery nurse asked about that last time.

Veronica continues to do well through all of this. I’ll write a better update of her adventures tomorrow.

Bye-bye catheter

Colin got his catheter removed today, and the stitches taken out. And not a minute too soon. I was ready to take the blasted thing out myself. It was always getting in the way, and it kept leaking and making a giant mess.

Last night was the worst (in terms of leakage). Colin was fussing at about 2 a.m. and wasn’t settling down, which is unusual for him of late. So I went in to see what was the matter. (Yes, I’m now sleeping on the couch at the moment because we all seem to sleep better that way. And really, our couch is pretty darn comfortable.) 

Poor little guy was soaked from his armpits to his toes. He was only half awake (and probably freezing) when I picked him up. But, of course, I had to turn on a light to clean him up (just a little one, but it was enough). And by the time I was done stripping off his wet clothes, changing his diaper and messing around with the catheter and bag to try to figure out where it was leaking from … well he was pretty wide awake. 

I knew I was a goner when I snapped the last snap on his jammies and he started saying “Up?” “No Colin, it’s 2 in the morning. We sleep now.” Cute little eyes blink at me, then “Up?” I tried snuggling with him on the bed, but every couple of minutes he would crawl up on me and kiss me several times. Then he’d snuggle back in again, only to repeat it a few minutes later. I love getting kisses from my babies, but not so much in the middle of the night. 

After trying several other approaches, I finally fixed him a bottle and put him back in the crib (I covered the wet spot with a blanket). Of course, his crying woke Ethan up — but Ethan at least was able to get back to sleep pretty quickly. Colin finally fell asleep at 4:00.

John took him to the appointment, and said he did very well. He cried when they took out the catheter tubes and the stitches, but bounced back quickly and was a happy baby again before they left. 

We go back on Thursday to see the surgeon (at the hospital, between his surgeries — we have to keep calling the operating room number and he’ll let us know when he’s between surgeries, at which point we’ll run down to see him). He wants to make sure everything is still healing well — including the hole in Colin’s stomach through which the catheter used to pass. 

We still have a rather large risk that the repair and graft don’t heal properly and everything starts to break down. So we’re hoping and praying that doesn’t happen. Otherwise our surgery in six months will be a repeat of this one, rather than a cleanup like we’re hoping for.