"That's what we do for PRS kids..."

I saw that on a message board last night and it got me wondering - just what was your care plan for your PRS child? It became clear to me during the first year that what happens varies a great deal regionally and what is the typical course for one area, is vastly different from the typical course somewhere else. It also became clear that sometimes, a hospital will offer you choices based on their own protocol, and not tell you that there are other options available - so lots of parents are making decisions without knowing all there is to know. Seems like there should be a database, or at the very least, a website where you can see the choices available in different areas of the country, or world.

So I'm curious --- what were the options presented to you??

A picture is worth a thousand words

Kate's 3rd birthday and her 1st anniversary of decannulation are both rapidly approaching. In honor of that, I'm posting these pics of her, for all the "silently reading" parents out there so you will all know that you CAN hope that things will end up well for your baby. Things are ending up fantastically typical for Kate, and they sure didn't start that way!!




Here is Kate still in utero. This was taken the day of her birth and she was born a few hours later. Now that I know what I'm looking at, it's glaringly apparent that she has PRS.



Here she is a few hours later, the night of her birth. She's already in the NICU and NOT HAPPY about it. The nurse took the pic so I could see her. She's been whisked away immediately and I"d not seen or held her yet. I remember looking at this pic and saying, "good I'm glad she's crying that means she's pissed".




And here is Kate now. This was taken at the end of May this year. Clearly, Kate is completely typical looking and I can assure you, completely typical developmentally as well. Just at the bottom of her extended neck, you can see where her stoma scar is. Other than that, there is absolutely nothing to indicate that she ever "had anything wrong with her".

Post op checkup

Yesterday we took Kate for her post op checkup with Dr. Jacobs. Since she's no longer an "airway patient", we no longer have to be see in Airway Clinic at the main hospital. We took Kate to the annex facility in Princeton, which was only 50 minutes from our house as opposed to 2 + hours. Needless to say, we were pleased before we even stepped foot in the place. The appointment was fast: her site looks great, keep it covered with sunscreen and come back in 6 mos. Great doc, see ya then. But he did ask about her hearing and when it was revealed she hasn't had hearing test at CHOP in over a year, he decided to do one right then. Thank God the audiologist was available and it was a relatively quick and painfree 30 min. She did 3 tests: the first one Kate wasn't interested in doing at all, the second one she failed. They put probes in her ears and measured her ears response to sounds. It showed no response. YIKES! But the 3rd test was behavioral (put the block in the bucket when you hear the beep) and she passed. Left ear tested completely normal, right ear showed mild loss. So we'll continue to test her hearing every 6 mos until she's 6, then yearly after that. Remember, Kate has Sticklers Syndrome, and progressive hearing loss is a symptom of Sticklers.

Otherwise, Kate's perfectly fine.

Hey, hey, hey potty!

So, I've potty trained 3 kids already. I consider myself, not an expert by any stretch of the imagination, but all 3 kids were very different and had different things that worked for them, or didn't, so I've seen quite a bit. But as has been apparent since Kate's birth, she's like a first child ALL OVER AGAIN. I let the entire winter go by (even though the signs were there occasionally) without even attempting it with her. But May 1, I took her to pre school orientation and felt like I was hit by a truck when they announced, "all kids must be trained before they can start school". YIKES. Clearly we needed to get down to the business of peeing and pooping on the potty - fast. I got videos and books and talked incessantly about it to her. She had pretty much no interest until she saw Prudence and her potty on tv. Things started clicking and she's forging ahead to parts unknown now -- the public toilet. Tuesday night, she told me she had to pee at her brother's baseball game. What's a mom to do? I had to take her to the toilet and pray it wasn't a bacteria convention. It was suprisingly ok, I held her on the pot and guess what? She peed!!! It's been pretty consistent since then. She's wearing Pull Ups (which I franky don't believe in - just a diaper in the guise of underwear) but the Pull Up is dry and she's yanking it down to sit on her potty when she needs to. Now we just need to progress to wearing underwear, all day.

Movin' on up

This is video of Kate's first time in the pool. She's only ever been in the bathtub and only with inches of water. She had never been submerged in water, never had water over her head, never mind swimming. Because of that, she only lasts seconds in the pool but it's still a milestone nonetheless! Two days after this, we went to my husband's brother's house and she spent 4 HOURS in their hot tub. She was positively prunish but so so happy. I think the combination of warm water and being able to feel the bottom of the tub helped.

Stoma closure - part 3

Post op 2 weeks.

Stoma closure - part 2

So her stoma is finally closed. She no longer has a hole visible in her neck, that shows where that tiny piece of silicone kept her alive all those months. It's a new dawn, a new day, a new life. She can wear a "bathing soup" and actually go in the pool, instead of watching from the side with me frantically making sure no water goes anywhere near her neck. The pic on the left shows her stoma (and Kate) as it looked the morning of the procedure. The pic on the right shows Kate, matter of factly, coloring the morning after the procedure.

Honestly, this was the easiest trip to CHOP for a surgery, that we've even had - even with a few hiccups along the way. We arrived in plenty of time and while they took Kate into the peri op area almost immediately, we stayed there waiting for over 2 hours. It was definitely torturous -- Kate had been n.p.o since 11p the night before and was starving. This was her first procedure without a feeding tube and she talked incessantly, while in the tiny cubicle, about the chicken nuggets, french fries and ice cream she was getting once it was over. Poor girl, just like her mom -- all about the food. Anyway, the finally took her back at 1:40 and by 3 sent out a nurse to tell us they were closing her up for good. Yippeeeee!!! By 3:30 another nurse brought us to a private meeting room to wait for Dr. Jacobs to speak with us. Now, this was Kate's 7th time in the CHOP OR and in those 7 times we've NEVER been brought to a private room. In fact, the day of Kate's trach placement, Dr. Jacobs came out to show me the pics from her bronch and explain that he needed to trach her.....in front of at least 30 people in a tiny crowded little room. The next parent was literally sitting 6 inches from me. So to be brought to a different room certainly upped the ante of our mild anxiety. B. and I sat in that room barely speaking until Dr. Jacobs finally came in, beaming and saying how great Kate had done. Whew! I breathed an audible sigh of relief and said, "you're killing us having us put in this room, we thought something had happened!". No, no she was fine he said. Her stoma was practically invisible inside her and the whole thing ended up being mainly a cosmetic procedure. Whew - again. Ultimately, she was sent to the regular floor, after a miscommunication sent B and I up to the PICU (where we both exchanged looks and decided through mental telepathy that we were keeping her door closed the entire time because the kids up there are SICK). She was pretty grogged out by the time we got to her room, but not groggy enough. She overheard B and I discussing our dinner plans (CHOP has room service for patients and parents) and shouted out, "I want my chicken nuggets!". Ok then. She ate them all, plus the fries, and a huge cup of apple juice -- all that 3 hours after surgery. Overnight, she required NO pain meds and slept from 12 -5. Needless to say, she was sent home early the next morning without incident.

Oh, and just as a point of reference, CHOP has remodeled their parent waiting area and you are no longer in that tiny room, with a parent 6 inches from you. It's quite nice now, with a little kitchen, vending machines, tvs and computers...and lots of space.